Westminster Hall

Tuesday 8th July 2014 Westminster Hall

Tuesday 8 July 2014

[Sandra Osborne in the Chair]

Organ Transplants

Tuesday 8th July 2014 Westminster Hall

Motion made, and Question proposed, That the sitting be now adjourned.—(Harriett Baldwin.)

09:30

[Jim Shannon (Strangford) (DUP)]

I am pleased to have the opportunity to speak on this subject. We debated the organ donation register only a few weeks ago, but it is appropriate to highlight the issue in national transplant week. I believe that everyone present is committed to ensuring that organ donation increases throughout the United Kingdom.

I pay special tribute to the hon. Member for Stretford and Urmston (Kate Green), because although I am introducing the debate, I must confess that she asked me to do so. We asked the Backbench Business Committee for an opportunity for this debate, and that opportunity has come this morning. I thank the hon. Lady for giving us all the opportunity to participate, and I hope that the debate will be useful to all involved. I also thank the Backbench Business Committee for giving us the opportunity to speak on this subject in national transplant week. I am passionate about organ donation not just because of the cold facts, but because I witnessed first hand how urgent and important organ transplantation is when my nephew Peter required a kidney transplant.

I was delighted to hear that the latest figures from the British Medical Association show that the number of people who have registered to be an organ donor in Northern Ireland has reached an all-time high of just over 582,000. I checked that figure last night and again this morning because I wanted to make sure that it was right, and it is correct: 582,000 people are registered. That is fantastic news. That all-time high has no doubt been aided by the marvellous work of our Health Minister in Northern Ireland, Edwin Poots, who since 2012 has been dedicated to increasing awareness of organ donation and achieving the desired figures.

That said, much more needs to be done. The UK has one of the lowest rates of organ donor registration in Europe, with 96% of the population supporting the principle of organ donation yet only 30% actually being registered. More than anything else, those low numbers are because the UK population is unaware of and often misinformed about organ donation, how to register, the process involved and how vital transplants are. Many campaigns are under way. I do not often read The Sun, but it is running a campaign on transplants. It pursues many issues, and today it is trying to encourage more people to sign up to the organ transplant list.

Currently, 7,000 people are waiting for an organ transplant, and three people die each week while waiting for organs. That is three people too many: three families left heartbroken by the loss of a loved one who could have been treated if more people were on the list to donate. Just one person can save up to nine lives, so the Government must encourage as many people as possible to sign the register. I know that the Minister is committed and that her response will be positive. With this debate, we want to encourage our nations, collectively, to get involved and sign up.

A third of families refuse to give consent for their loved one’s organs to be donated because they are unaware of their loved one’s wishes. That is just one reason why the Government must consider legislating on the introduction of a “soft” presumed consent system, wherein the families of the deceased can object to donation if the deceased dies without expressly electing whether or not to donate their organs. I strongly believe that people should be on the list as an organ donor unless they opt out. That is very much the soft option. Such a system would undoubtedly increase the number of organs available for transplantation and reduce the number of people dying while on waiting lists.

In 2013, the Public Health Agency in Northern Ireland carried out a survey in an attempt to gauge public opinion about organ donation and came up with some interesting figures. It found that 56% were in favour of presumed consent, just 18% were against it, 8% wanted more information and 18% did not know. A further 62% said that they would not opt out if a soft system was introduced. I believe that there is movement among the people of the United Kingdom of Great Britain and Northern Ireland towards the soft option, which we should consider.

The NHS “Taking Organ Transplantation to 2020” strategy seeks to increase donor rates by 80%, but it does not include or discuss the option of a soft opt-out system. Perhaps the Minister could share her thoughts on that in her response. The lack of mention of a soft opt-out is unfortunate, as the strategy refers positively to the evidence from countries such as Belgium, Croatia and Norway showing

“an increase in donation rates following a move to an opt-out system together with investment in infrastructure and raising public awareness of organ donation.”

It is clear that other nations have made the move and seen the benefits; it is time that our nation moved in the same direction.

The 2013 survey also found that 84% of respondents in Northern Ireland supported the idea of transplantation, but only 32% were on the register. Worryingly, more than a third of respondents were not aware that the organ donor register existed, with that lack of awareness being lowest among 16 to 29-year-olds and people over the age of 65. Perhaps we need to do more to encourage people in those two age categories.

[Ms Margaret Ritchie (South Down) (SDLP)]

The hon. Gentleman is making a compelling argument about the need for organ transplants and has addressed the opt-out system that has only recently been introduced in Northern Ireland. Does he have any suggestions as to the possible reasons why many people do not offer to give their organs for donation?

[Jim Shannon]

I thank the hon. Lady for that intervention. I will come on to address that issue later in my speech, but we can do a number of things. In Northern Ireland, when people apply for a driving licence they must decide whether they want to be on the organ donation list. There is no dispute: they have to answer yes or no. If they answer yes, they are on it; if they answer no, they are not. It is as simple as that. I think that that is one reason why 582,000 people are on the donation list in Northern Ireland. Perhaps the Government here on the mainland can take that approach as well.

I want to highlight a couple of other important points about the 2013 survey. Many of the respondents were wrongly informed on the subject of organ donation—for example, one in five wrongly thought that it was possible for a brain-dead person to recover from their injuries and that only the organs of young people were good for transplants. That shows the need for better understanding of the system, and we should look at how we can educate people through campaigns in schools, TV adverts and in GP surgeries. Maybe we MPs can post on our Facebook pages or websites—not maybe; yes we can. We must encourage people to sign up to the organ donation list.

In Northern Ireland, 78% of people surveyed said that they would accept an organ if they needed one. Some 96% of families claim that if they knew their loved one’s wishes, they would agree to the donation. That shows how important it is for families and friends to discuss organ donation. It should be a subject for consideration. Perhaps a media campaign could be organised and the issue written into the storylines of some of the soaps. That might make it an essential subject matter for discussion around the dinner table.

Several charities have backed this debate, and I would like to mention a few shocking statistics that they have kindly supplied me with. I want to focus on cystic fibrosis; I know that other Members will focus on other things. The chief executive of the Cystic Fibrosis Trust, Ed Owen, said:

“We are delighted to lend our support for National Transplant Week. For many with the life-shortening condition of cystic fibrosis, a lung transplant is the only way to prolong life. Yet it is a tragedy that one in three on the transplant list will die waiting for new organs.

It is vital that more lungs are made available for transplantation. So we strongly support measures to encourage more people to donate their organs in the event of their death—and we continue to support a change in the law to a system of presumed consent to help ensure more people have that vital discussion with their loved ones about their wishes.

Alongside this, more effective action is taken to ensure that a greater number of donated organs are used for transplant with a new national lung allocation scheme and greater use of extended criteria lungs. Our report, ‘Hope for More’, published earlier this year, set out a series of recommendations”.

I want some of those recommendations to be looked at.

Last Saturday, I was judging horses. I do not know very much about horses, but I was lucky; they said to me, “Pick the one that looks the best to you,” which was dead easy. It may not have been the horse the experts thought was the right one, but it was the one that I thought was the right one. At that event, I met a constituent, a gentleman with cystic fibrosis. I remembered him as a healthy, active person, but when I met him on Saturday, he told me that his condition had worsened. I am ever conscious of him and of many other constituents affected by this issue.

In March 2014, the Cystic Fibrosis Trust published the report “Hope for More”, which contained 12 recommendations for increasing the number of successful transplants. Key among them was a call for a national lung allocation system similar to the UK urgent heart system. We have a system in place that works; why can we not extend it to lungs? Regular audits have been key to the success of the urgent heart system. Surely a similar system could be introduced in relation to lung transplants.

In Germany and America, the introduction of a lung allocation system has led to a significant increase in lung transplants and huge decreases in waiting lists. I presume that we could do the same here; there is no reason why we cannot. The current system certainly seems flawed. If a patient in the south of England needs a lung transplant, they must wait for one to become available in their area rather than receiving a lung from the midlands or the north of England. We need some kind of scoring system so that those who are most desperate for a transplant receive one first, and people are ordered from those most at risk to those least at risk.

The Cystic Fibrosis Trust has come up with more ways in which the number of organ donors and therefore transplants could be increased. Although time does not permit me to go into great detail—I am conscious that other Members want to contribute—I believe that those suggestions warrant a committee to consider and delve into the issue. I hope that the Minister will indicate in her response whether she feels that a committee would be helpful in moving the campaign and this debate further on.

Existing lung donor criteria were originally drawn up over 30 years ago. Although they were reviewed in 2001, they have changed little. The criteria place limits on donors according to age, previous health complications and a number of other clinical measures. Although it is important to ensure that only viable lungs are transplanted, those limiting rules mean that lungs from fewer than 25% of brain-dead donors are used in clinical lung transplantation. There are clinically viable lungs among the remaining 75%, and we need to maximise their use. I suggest that we look into that.

On lung resizing, data on organs exported overseas suggest that many lungs from larger donors are not used due to size mismatch. The technology exists to resize organs, and it must be made more widely available. People with cystic fibrosis have smaller than average bodies due to difficulties absorbing nutrients from food.

Extracorporeal membrane oxygenation techniques, which artificially preserve critically ill lung transplant patients and allow them extended time to receive donor lungs, have been developed to prevent death. ECMO is available at eight designated centres in the UK, but guidance is lacking on its appropriate use in lung transplants, where it has been shown to work as a bridge between respiratory failure and transplantation. It is feared that without clear guidance, ECMO will not be used appropriately in such circumstances, leading to adverse outcomes for patients.

The NHS Blood and Transplant 2020 strategy commits to providing

“guidance on levels of acceptable risk in relation to offered organs, particularly from extended criteria donors”.

It notes:

“Clinicians…will use their judgment, based on the current national and international evidence, to draw up criteria for non-acceptance”

and that

“there is variation in acceptance practices throughout the UK.”

Further, the strategy lays out actions

“to improve certainty about organ function”,

including investment in research to identify better biomarkers associated with good or poor function.

The Cystic Fibrosis Trust believes that it is the responsibility of NHSBT to publish guidance that brings together current national and international evidence to provide an up-to-date framework to support and guide clinicians’ judgment. It is a weakness of the NHSBT 2020 strategy that there is no commitment to providing clinicians with such a resource. Since the introduction of a German surgeon, André Simon, as head of transplant at Harefield, transplants have increased by 50%, while outcomes have remained every bit as good. It is ascribed to the culture difference in Germany. André Simon, having transferred that willingness to use extended criteria lungs at Harefield, has had an impact on the transplant programme there.

The 2020 strategy mentions the need for NHS hospitals and staff to be better supported to meet demands. That is welcome, but no mention is made of lung downsizing, and very little is made of extended criteria organs. Elsewhere in Europe, donor lung resizing is commonplace and outcomes are equitable with those of lungs that are not resized. Only three doctors in the UK can resize lungs, so it is a lottery as to whether they may happen to be around when needed. That is not disrespectful to anybody; it is a fact of life. Methods such as those, which involve controlled and safe innovation, are key to improving the likelihood of a lung transplant and go hand in hand with the NHSBT’s aim to

“ensure that transplant centres have the capacity and surgical expertise and other clinical skills to meet the demands for transplantation”.

Innovation has not been addressed in detail in the strategy, but it has been identified as an area on which commissioners must focus in order to make it a reality. Although the NHSBT strategy expresses a desire for a 5% increase in the number of hearts and lungs transplanted from donors after brain death, it is unclear how that will be achieved. We believe that there must be a renewed focus on understanding which lungs are suitable for transplant. There is strong evidence indicating that a new approach is increasing the rates of successful lung transplant elsewhere in the world.

Recent scientific guidance suggests that extended criteria lungs are key to progress in increasing lung transplant rates. Research published over the past 10 years by a range of international centres such as the university of Toronto, Hannover medical school, University Hospital Zurich and the Royal Brompton and Harefield Trust suggests that the use of selected extended criteria lungs may safely expand the donor pool without adverse consequences for lung transplantation. Many lungs designated as marginal by the International Society for Heart and Lung Transplantation criteria are now perceived by experts to be as clinically effective as standard criteria lungs.

Things are changing. Scientific evidence and research shows that more lungs are suitable, and we should be using them. Although the medical evidence is continually evolving, public perceptions are falling behind. We must address the issue of education and perception in the general public. We as MPs, this Government and the House can collectively ensure that that happens.

The charity Anthony Nolan seeks to help people with blood cancer or rare blood disorders who require blood stem cell or bone marrow transplants. The charity has said that despite the fact that there are more than 553,000 donors on the register, there are still not matches for every patient in need of life-saving transplants. Once again, more donors from black and minority ethnic communities are needed, as the only chances of finding a match are among those of similar ethnicity.

The average number of donors per constituency is 796, which is encouraging, but more are desperately needed. In my constituency of Strangford, we have a lot to do, with just 381 donors. I intend to use my opportunities as an MP through Facebook, my website, this debate and the local press to encourage more people to sign up and show the importance of organ donation and transplantation back home, but we must encourage Government to consider new ways of campaigning and raising awareness and new approaches, such as a soft opt-out system and a national lung allocation system.

I have had other correspondence from other bodies relating to organ transplants and blood safety. There are certain risks to organ donors, but they can be monitored in such a way as to reduce safety concerns. Maybe we need to raise the level of awareness and education, so that donors know they are in safe hands. We need to ensure that blood donors and organ transplant patients receiving blood transfusions are as well educated and informed on blood safety issues as they can be.

I am very aware that other Members want to speak and I will give them that opportunity; I also want to give the shadow Minister, the hon. Member for Liverpool, Wavertree (Luciana Berger), and the Minister the opportunity to conclude the debate. I will just give a few figures to put matters into perspective. Since 1 April, 309 people have donated organs; an additional 563 people have donated corneas; 824 people have received the gift of sight; and 804 people have received transplants. However, there are still 6,966 people waiting for the gift of a long and healthy life. Ultimately, choosing whether or not to donate organs will always remain the individual’s right, which is good and proper, but we in this place have a responsibility to ensure that the individual is well-versed in the matter and that the choice they make is an informed one. In organ transplant week, we need to focus on the legislative change that can and will put more people on the organ donor list, so that we can save even more lives. The first stage of that campaign is today in Westminster Hall, and we ask the Minister to respond appropriately.

09:50

[Caroline Nokes (Romsey and Southampton North) (Con)]

As ever, it is a pleasure to serve under your chairmanship, Mrs Osborne. I congratulate the hon. Member for Strangford (Jim Shannon) on having secured this timely debate. As he said, it is national transplant week, and I wish to emphasise a particular aspect of organ donation.

The hon. Gentleman said he seldom reads The Sun; I assure him that I rarely read the Daily Mail. However, the Daily Mail has joined the campaign to encourage more organ donation and it has picked up on the case of a young boy who lives in my constituency. James Lewis, just four years old, is one of the 32 British children who desperately need a new heart. He was diagnosed last year with restrictive cardiomyopathy, which means that the lower chambers of his heart are rigid and cannot fill up with blood. His parents Kate and David have now spent nearly a year hoping and waiting for a donor, but importantly for them they have thrown their energies into Live Life then Give Life, a charity campaigning to save and improve the lives of all those in need of, or in receipt of, organ and tissue transplants. The charity exists to improve education and awareness of organ donation, and to fund projects that increase the number of successful transplants in the UK.

Little James has become something of a poster boy for the campaign and his parents have taken the brave decision to talk about child organ donors, to remove the stigma surrounding the issue of organ donation by children, as well as the superstition about it that there sometimes is. The hon. Gentleman spoke about the amazing technology that exists, including the ability to resize lungs, but unfortunately hearts cannot be resized. James is a four-year-old boy and because of his condition he is tiny; he can accept a heart only from a donor who is, at most, three times his body weight. Inevitably, therefore, that organ would have to come from another child.

I am sure that many of us here today have registered as organ donors ourselves, but how many of us have also signed up our children? As Kate Lewis says, organ donation needs to be much more visible and that is part of the reason why she has been so open about James’s condition. If she could ask one thing of the Minister today, it would be a Government-backed campaign in hospitals, doctors’ surgeries, Sure Start centres and schools as a way of removing the taboo that surrounds child organ donation.

We all appreciate how hard it must be for any parent to have to make a decision about organ donation at a dreadful time after a tragic event. However, there are significant time pressures because organs have to be retrieved very quickly. That is why it is so important for people to talk about organ donation and to understand what their loved ones’ wishes are, so that at a very difficult time the decision, in many ways, has already been made and people know what everybody’s wishes are.

I am sure that my hon. Friend the Minister will want to tell us what strategies are in place to encourage organ donation and to increase the sign-up to the donor register. It is a sad fact that although 31% of adults are signed up to the donor register, it is thought that about 57% of parents would not give consent for their child’s organs to be donated.

I urge my hon. Friend the Minister to consider pushing for discussion of organ donation to be included as part of citizenship education or personal, social, health and economic education in schools. For many children, the issue can be astonishingly straightforward, and many of them have said that they see it as being just like recycling—making good use of something that would otherwise go to waste. It is Kate’s belief that children are far more open to the idea of organ donation than their parents, and I have no doubt that she is right.

Children such as James desperately need replacement organs; their futures are entirely dependent on receiving them. As I said at the beginning, I wholeheartedly congratulate the hon. Gentleman on securing this debate, which is an opportunity to bring this issue out into the open and for ideas from a range of charities to be debated. I have mentioned Live Life then Give Life. The Cystic Fibrosis Trust has also been in touch with me, and its “Hope for More” report gives some really good pointers as to the way forward. This week is an opportunity to bring this issue to the fore and to discuss the myriad ways in which we can break any remaining taboos surrounding this life-giving issue.

09:55

[Kerry McCarthy (Bristol East) (Lab)]

Mrs Osborne, it is a pleasure to see you in the Chair, as always.

I thank the hon. Member for Strangford (Jim Shannon) for securing this debate and for raising awareness in the House of the desperate need to increase organ donation. I will focus on cystic fibrosis. As the Minister will know from an Adjournment debate I secured a few months ago, I have a nine-year-old niece who has CF. Thankfully, she is in pretty good health at the moment, but as a family we obviously live with the knowledge that her condition is likely to deteriorate, particularly as she gets into her 20s.

In that Adjournment debate, I spoke about the excellent CF centres that we have in Bristol for children and adults with the condition, and one of the key things that I discussed with people when I visited Bristol’s adult CF centre was the desperate need for lung transplants. Thankfully, life expectancy for people with CF is increasing; it used to be very much a childhood disease, as people with CF did not survive into adulthood. However, it is still a life-limiting illness and most of the 10,000 people with CF in the UK will need a lung transplant to extend their lives.

CF is the third most common reason for lung transplantation and CF patients have the best survival rate among those who receive lung transplants, with 60% of them living for at least another five years and some for much longer. Obviously, given medical improvements, the situation is getting better all the time. The Cystic Fibrosis Trust gives the example of 43-year-old Vicky Petterson, who was successfully given a transplant when she was 28, enabling her to watch her son grow up and to celebrate two decades of marriage. A lung transplant is not a cure for CF, but it can give the recipient and their family the priceless gift of more years of life.

Generally, there are about 60 people with CF on the transplant waiting list at any given time. On average, they will be on the list for 412 days, and it is quite shocking to compare the UK’s statistics in this area with those of some other countries. In Austria, the average wait is 107 days; in France, 110 days; in Spain, 180 days; in Belgium, 194 days; and in Germany, 244 days. The Netherlands is much worse than those countries, with an average wait of 594 days, but the UK figure is one of the worst in Europe, with an average wait, as I said, of 412 days, which obviously puts a huge strain on patients waiting for transplants. While they wait, their condition will deteriorate quite significantly; many of them will become dependent on oxygen and will have to spend most of the time they wait in hospital, as they require intensive treatment. Usually, they would not be expected to live for more than two years without a transplant, so a clock is ticking as they wait for the call about a transplant coming through.

A few months ago, the case of Matt Lodge was reported in The Bristol Post. Matt was 23 and had done pretty well throughout his time at university, but then his condition had suddenly deteriorated. While he was waiting for a transplant, he always had to stay within four hours of Birmingham, so that he could be ready to drop everything and go there for a transplant. One night, he received a phone call at 1.30 am to tell him to go to Birmingham. He obviously headed up there, only to be told that there had been a mistake and his blood type was not compatible with the donor organ, so the operation could not go ahead. Several months later, he is still on the transplant waiting list; we can only imagine how traumatic that must be for him. It was very brave of him to have gone public with his experience and to use it to support the opt-out campaign and to try to encourage more people to come forward as donors.

As the hon. Member for Strangford said, the Cystic Fibrosis Trust is campaigning to maximise the use of organs. The trust’s “Hope for More” campaign has already been mentioned, as has the national transplant week’s “Spell it Out” campaign.

Some 32% of the UK population—just over 20 million people—are registered at the moment, but it is important to note that lack of registration is not necessarily a problem, because fewer than a third of donors would have been registered in the first place. The biggest issue is consent. The CF Trust reports that the UK has one of the highest rates of family refusal in the western world. Obviously, it is difficult for families to face such a big decision when they have just lost someone: they might feel that it is a violation of their loved one’s body or they might just not be ready to talk to doctors about such issues, particularly if the death has been sudden. That is why it is so important for people to discuss the issue with their families. It is one thing carrying an organ donor card or being registered online, but the best thing people can do is tell their family in advance that they would want that done, because then the decision is much more straightforward.

The hon. Member for Strangford talked about resizing—downsizing—lungs. The “Hope for More” report details ways, including resizing lungs, to reduce the time that people spend on the waiting list, other than just increasing people’s willingness to be donors.

Just 23% of donated lungs were successfully transplanted last year. Some of those not used may have been clinically viable, if only certain procedures could have been followed. As the hon. Gentleman said, the CF Trust is concerned that the criteria used to assess whether a lung is safe and to designate “extended criteria lungs” may not reflect current scientific knowledge because those criteria were mainly developed 30 years ago and need bringing up to date. The trust’s report accordingly calls for a

“renewed focus on understanding what lungs are suitable for transplant”

and for more transplant surgeons to be trained in downsizing donor lungs. As the hon. Gentleman said, only three people are trained to do that. Downsizing is particularly important for CF patients, as the hon. Gentleman also said, because they tend to be smaller than usual and cannot necessarily cope with average-sized lungs.

Techniques such as ex-vivo lung perfusion could be used to assess and potentially repair sub-optimal lungs. I understand it is still experimental at this stage, but the CF Trust reports that researchers suggest it could improve transplant rates by up to 30%.

The hon. Gentleman has obviously been well briefed by the CF Trust—I was listening to him, thinking, “Okay, cross those bits out”—so I will not go into too much detail about the national lung allocation system. However, as he said, lungs are allocated to the nearest transplant centre, which will assess the patients on its own list for the most suitable match. That would apply even if there were a patient in more urgent need on another transplant centre’s waiting list.

This year, NHS Blood and Transplant has developed a super-urgent group—some people will be considered a national priority and will be able to receive compatible lungs from anywhere in the UK. However, the CF Trust is keen for the measure to be rolled out and used anywhere. Of course, it is quite difficult to assess who is the most urgent case, but the issue needs to be looked at. As the hon. Gentleman said, there is already a similar system for heart transplants.

[Jason McCartney (Colne Valley) (Con)]

I, too, work closely with the Cystic Fibrosis Trust here in Parliament. I have hosted a number of events and have met people who have had lung transplants. The hon. Lady is right to highlight the UK’s average waiting time of 412 days, one of the highest in Europe. I lend my support to the CF Trust’s idea of a national lung allocation system, which could be a big step forward in reducing that waiting time and could make the use of those organs a lot more effective.

[Kerry McCarthy]

I understand that the hon. Gentleman chairs the all-party group on cystic fibrosis. I am grateful for his support.

My final point is about the importance of psychosocial support for patients preparing for and recovering from a lung transplant. It can be a stressful process, yet support is not commissioned as a demand-led service. The fact that lung transplants have been cancelled because patients did not feel psychologically prepared or able to go through with them, despite all the desperate waiting, indicates that more consideration needs to be given to psychological support and a more holistic approach to the whole process.

I hope today’s debate has underlined the need for a more joined-up approach across the board to improve organ donation. The issue is not just about registration and donation rates; it is also about innovation, to improve the availability and allocation of donor lungs. I look forward to the Minister’s response.

10:04

[Glyn Davies (Montgomeryshire) (Con)]

I am sorry that I did not give you prior notice that I wanted to speak, Mrs Osborne. Although this is an important issue to me, I did not realise that it was on the agenda and I am grateful for the opportunity to speak. I congratulate the hon. Member for Strangford (Jim Shannon) on introducing the debate. I agreed with a substantial part of his speech, although not all of it. I will come to that point later.

Organ donation and transplantation is one of the most important developments in modern medical science, enabling treatment of patients with failing and damaged organs. Huge advances in transplant surgery and immunosuppression have enabled great advances to be made. Hearts, kidneys, livers, lungs, pancreases, and other organs, are successfully transplanted, but the demand continues to grow. Medical science is enabling more transplantation and we are living longer, but still about 500 people die every year while waiting. We always have to be looking for ways of increasing the levels of donation and transplantation.

My interest in the subject stems from a friend of mine receiving one of the early heart and lung transplants at Papworth, probably about 25 years ago. It was phenomenal at the time, but since then it has become much more common and is more accepted. I have had an interest since that time and that has developed in terms of promoting support for those suffering from kidney disease in my constituency, for example, with the development of a dialysis unit, and it continues here. I am also a trustee of Kidney Foundation Wales, a wonderful organisation promoting transplantation in Wales, although I disagree with it about presumed consent. I have always been disappointed in that regard and somehow feel isolated, because all the other trustees of Kidney Foundation Wales favour a change to presumed consent, which is now a new Welsh law. However, I am implacably opposed to it, because I just do not believe it will work. I will come to that point later, as one of the two points that I want to make today.

We all want to increase the level of organ donation—that is, all those in favour of presumed consent and all those in favour of continuing with informed consent. Providing new life to a fellow citizen is undoubtedly the greatest gift that any of us can give. I have spoken on this issue several times before, but there are two new issues to consider that I want to mention.

First, I emphasise how much amazing success we have had in promoting organ donation. We all owe a debt to the right hon. Member for Kirkcaldy and Cowdenbeath (Mr Brown), who established the organ donation taskforce—in 2005, I think—under the chairmanship of Elisabeth Buggins, an outstanding leader in this debate. That taskforce produced a report in 2008, with a target of increasing organ donation by 50% over five years. That target was met last year. However, it does not stop there. The latest figures show that, after six years, there has been a 63% increase, and it is still rising. We have seen a phenomenal increase as a result of the organ donation taskforce’s recommendations, which did not include presumed consent; in fact, it said that that was not a recommendation. It recommended an increase in the number of intensive care beds and specialist nurses, copying what had happened in Spain, which had delivered great success there in increasing organ donation. It is important to recognise that we can continue to build on the great success that we have achieved.

Secondly, I am disappointed that the British Medical Association takes a different view from me, supporting the introduction of presumed consent. However, it decided to do that on the basis of a show of hands at a conference meeting, and it was the quality of the speakers in the debate that led to that decision. Its decision was not based on a comprehensive report, like that of the organ donation taskforce; it was just a show of hands.

The point that I really wanted to make in contributing to this debate, because it is important and supports my view that no self-respecting surgeon would remove a patient’s organs without the support of their next of kin, is that the Royal College of Surgeons has in recent weeks withdrawn its support for the BMA’s position. The Royal College of Surgeons said:

“Evidence from these countries demonstrates that investment in public awareness campaigns and infrastructure that supports transplantation services, such as the availability of intensive care beds and number of specialist nurses in organ donation, can substantially increase organ donation.”

That is key. It continued:

“It is therefore of profound importance that investment in these areas is increased to support organ donation.”

It also said that

“we believe that there is insufficient evidence that an opt-in or opt-out system increases rates of organ donation. We consider the issue to be a matter for personal ethical and philosophical deliberation. We believe that to improve organ donation rates it is vital that investment in public awareness campaigns and infrastructure that supports transplantation services is increased.”

That is the key point on which I want to finish. There is no evidence that moving to an opt-out or presumed consent system will deliver any more organs. The Welsh Government incessantly repeat that it will, which is why popular support is seen when people are asked about the system. Clearly, if people are told again and again by the Government that the system will increase the number of organs, they will say that they support it. If I believed that it would increase the number of organs, I would support it, but I do not, because it simply will not do that. An important point to remember is that we need to invest in those things that work.

[Jim Shannon]

In my introduction, I referred to three countries that have shown that the soft opt-out option was successful: Belgium, Croatia and Norway. There is evidence and, with respect, the hon. Gentleman cannot deny that.

[Glyn Davies]

I have not studied the situation in Norway, but for many years the example in this debate was always Spain. Spain was the great success story, and it is indeed the best performer in the world. The Welsh Government have recently claimed Spain to be a presumed consent country. The reality is that the law was passed in 1979 and was effectively not followed. It was abandoned in 1980 and remains on the statute book, but it has never been activated. Ten years later, Spain introduced the changes recommended by the organ donation taskforce and had spectacular success. As a nation—I hope the Minister will say that we will carry on doing this—we need to continue doing what we have done, which has produced success: focusing on intensive care beds, specialist nurses and the example that the hon. Member for Bristol East (Kerry McCarthy) mentioned of people telling their next of kin. If all families knew, we could raise the consent rate, perhaps by 20%, to the levels that Spain sees, and we would deliver all the organs we need. The key is people telling their next of kin, so that their next of kin know what they desire. Far more transplants would be carried out and more people suffering would live.

10:12

[Mrs Madeleine Moon (Bridgend) (Lab)]

I well remember watching the television as a child in 1967, hearing the news of Dr Christiaan Barnard’s first heart transplant and being absolutely amazed. It seemed like something out of a science fiction book, yet we have moved in a relatively short space of time so much further forward. The one area, however, where we have not moved forward is public recognition of the essential part they have to play in donating a life. We have to raise awareness of that and of transplantation’s possibility and viability. Government and surgeons can only do so much; the public are the vital missing component.

We have, as has been said, a large percentage of public buy-in to the concept of transplantation. Some 97% agree with it, but only 30% carry donor cards. I follow the hon. Member for Montgomeryshire (Glyn Davies), and he and I co-chair the all-party kidney group. That statistic is important, since those awaiting a kidney are the largest group of people requiring a transplant. Some 5,640 people are awaiting transplants. Since April this year, 457 people have received kidneys from deceased donors and 158 have received kidneys from living donors. Those who are still waiting and their families and friends are deeply worried that a donor will not be found in time. In the meantime, they face kidney dialysis, which is a lifesaving but traumatic event. For many, it happens three or four times a week, and their life is on hold.

I disagree with the hon. Gentleman on the initiative taking place in Wales. People frequently say things are half the size of Wales or have twice the population of Wales. We are always used as a measure, but I have long felt that we are a nation of 3 million people that has huge potential for trying new ideas and huge opportunities for breaking new ground. In Wales, 56 people were donors in 2012-13, enabling 211 organ transplants to take place. Some 200 people are on the waiting list in Wales. We have to look at anything that makes a difference. We are a small country and we have to be creative.

The Human Transplantation (Wales) Act 2013 comes into effect on 1 December 2015. Will it make a difference? It provides an opportunity to learn a lesson, not just for Wales, but for the whole of the United Kingdom and, hopefully, the whole European Union and the whole world. I held a debate in Archbishop McGrath, which is one of my local Catholic schools, and the students chose the subject. They wanted to debate it. As young people, they felt that the issue affected them. What was interesting was that over and over again, issues came up where we have to be up front politically and enter into the debate. There was a fear about harvesting and people being allowed to die because surgeons wanted their organs. They were shocked to find, when they did their research, that in reality someone has to die to be an organ donor, in the right way, at the right pace and in the right place at the right time. The best place to be an organ donor—or the worst place, depending how one looks at it—is a high dependency unit, because there is an idea of when someone will die and there can be time to find the person who needs to receive the organs, an available surgeon and an operating theatre.

I reiterate the issues raised by my hon. Friend the Member for Bristol East (Kerry McCarthy) on psychological preparedness, which we do not highlight enough. There is huge stress and strain on people waiting for an organ. Sometimes, when the day arrives, they cannot face it. They feel terror at the change in their life. People have minutes in which to respond, and we should not underestimate how traumatic that can be, or how traumatic survivor guilt can be, whether that is for the person who died so they can live or for those still on the waiting list. The person taken off the list has a chance to live, while others were turned down.

I will briefly talk about some constituents. Jean Schofield gave her kidney for her son, Mark, who has now had three transplants. It is not necessarily just one transplant that is needed; some people need a lot more. Her fear and anxiety over her son has made her a driven fundraiser. She is an absolutely amazing example of how people can give their energies to organ donation and to fundraising for research and support for those who suffer.

Katy Lloyd, who is 24 and from Bridgend, has cystic fibrosis, which was identified when she was four months old. I cannot begin to understand what her family must have lived with knowing that she would eventually need a double lung transplant. The tension and fear experienced by her parents every time she had a cold or fell ill must have been horrific. Following her transplant, Katy said, “I didn’t think about it. It was all I’d ever known.” Imagine if all you had ever known was that one day you would need to face such an operation and that your life was on hold. She has made a fantastic recovery and is a great example of the difference that an organ transplant can make.

Judith French, a great friend of mine, has polycystic kidney disease. Polycystic kidneys cannot be removed during transplants and continue to grow. She was unable to leave the house and had a frequent, urgent need to be near a bathroom. The transplant was wonderful, but she still has large and growing polycystic kidneys, which is like carrying around a big bag of potatoes. She has high blood pressure, a swollen stomach and back problems, but she was refused access to benefits because she had had her transplant. We must consider how the benefits system recognises that transplants do not necessarily end the difficulties that some patients face and that they may still need support.

Andy Eddy, whom I recently met at an all-party group meeting, is 48 and married with two children aged 11 and 13. He was a practising solicitor and was advised to have a hepatitis C injection. An unknown genetic defect meant that the inoculation—a positive step to protect his health—actually led to the destruction of his liver. He had liver disease and liver failure and faced a long, horrific wait on the transplant list while his health declined. His life has been turned around following his transplant. He joined the British transplant games as a volunteer, winning one silver and three bronze medals, and is now chair of Transplant Sport. I have written to the Minister about the games, because they should be held at the same time as national transplant week, because they help to show the difference that can be made by a donation. Someone can be taken from death’s door to athlete. That is how big the change can be and that is what we must ensure that people understand.

Finally, it is vital that we get the message out about the need for conversations about one’s wish to be a donor. Talk to your family today about what you want. My husband has a motor neurone condition called Pick’s disease and I have power of attorney over his health. We went to see a consultant, who asked me, “On death, would you be willing for your husband’s brain to be donated for medical research?” I can still feel the shock at being asked that question. I said, “My husband still has the capability to make that decision. I want him to make it.” He said, “I want to do it.” I cannot imagine having that conversation at the point of his death. Such conversations must happen now while people are fit and healthy and they must be stark and serious. That is what I want to come out of today’s debate. I want families around Britain to be having those conversations, so we do not get refusals when people are carrying donor cards.

10:24

[Kate Green (Stretford and Urmston) (Lab)]

It is a pleasure to see you in the Chair this morning, Mrs Osborne. I thank the Backbench Business Committee for finding time for this debate during national transplant week. I also thank my hon. Friend—if I may call him that—the Member for Strangford (Jim Shannon) who went to the trouble of taking the proposal to the Committee. It has been really good to hear so many powerful speeches this morning, in particular that of my hon. Friend the Member for Bridgend (Mrs Moon), who moves me every time she talks about what is happening to her and her husband. It is incredibly brave to talk about such things publicly. For people paying attention to this debate, what she said will have brought home why they must talk to their families tonight about being an organ donor not only so that they will know their wishes, but also to inspire other family members and friends to join the register. We must remember that being on the register does not mean that just one life could be saved; up to nine lives could be saved or improved. Being an organ donor is an incredibly good, generous, human thing. If we can achieve one thing from today, I hope that more people will confidently register as donors and that families will give their consent to organs being donated at what are difficult and traumatic times.

The progress that we have made in increasing the number of registered donors is great. I was grateful for the tribute paid by the hon. Member for Montgomeryshire (Glyn Davies) to my right hon. Friend the Member for Kirkcaldy and Cowdenbeath (Mr Brown), who has a family interest in the matter. It is particularly powerful when hon. Members’ personal circumstances inform our debates and policy decisions. However, one under-represented group on the donor register is families from certain ethnic minority communities, which is a big issue in my ethnically diverse constituency. What steps are the Minister and NHS Blood and Transplant taking to increase donation rates among minority communities, because their need for donations is as great as any other?

I want to talk specifically today about lung transplantation, which I have discussed before not least because I was introduced to the issue by a constituent of mine, Natalie McCusker, who received a double lung transplant at Wythenshawe hospital last year. As did other hon. Members, I want to thank the Cystic Fibrosis Trust for the helpful briefing and support given for today’s debate and more generally. I also welcome the progress made since my Adjournment debate on the subject almost exactly a year ago when I talked specifically about the problems with the allocation system and how certain parts of the country, including my region of the north-west, were losing out. It is not just that in comparison with other European countries the UK performs less well; within the UK some zones do much better than others. The north-west is one zone where people have a particularly long wait for lung transplants. I welcome the allocation of super-urgent cases on a national basis and the annual review of the size of zones, which are both good steps forward.

There is, however, scope to do more. We could look at extending national allocation to all super-urgent cases and then perhaps to urgent cases. In due course, we could run the whole country on a national allocation basis. I realise that NHSBT and the Minister will want to examine carefully the possible consequences for patient outcomes, but can she assure us that the proposal remains under live and active consideration? International evidence suggests that a national allocation system could produce as good if not better outcomes. When we are so far down the European league table, it is right to consider what we might learn from other countries.

I am also pleased that NHSBT has reissued some of the guidance relating to transplantation, in particular guidance on the difficult transition from child patient to adult patient, which was exactly the situation that my constituent Natalie found herself in. She was initially being treated at Great Ormond Street hospital, but when it became likely that she would need a transplant, she was coming up to her 16th birthday and so had to transfer to the adult list and effectively lost about a year in terms of her being deemed ready to receive a transplant. I understand that improvements have been made in the guidance on handling that transition. I will be grateful for any update that the Minister can give us.

Supply of organs has been discussed by other hon. Members this morning. There have been important and welcome developments on resizing, which is especially important for children, women and CF patients, who are likely to be of smaller stature. Colleagues also pointed out, however, that only a tiny handful of doctors are able to carry out the resizing operation. What steps are being taken to extend that capacity?

Similarly, what about extending the criteria for usable lungs, which is clearly a sensitive issue? Patients’ own wishes and—I do not say the word in a pejorative sense—prejudices have to be taken into account. As the hon. Member for Strangford said, however, international research suggests considerable potential for more marginal lungs to be reusable, while differentiation between different transplant centres even within the UK is apparent. Harefield is doing particularly well, perhaps showing the way.

Will the Minister update us on what is being done to assess the evidence further on extending criteria and revising guidance? Will she also tell us what is being done about looking at the very different rejection rates in the different centres around the country? That is of particular importance when we are stuck with the zoning system, which means that people may be forced to go to a centre where rejection rates are much higher than if they were in treatment elsewhere.

Like the hon. Member for Strangford, I shall comment on some of the other techniques being developed. For example, the ECMO technique is highly specialist, as he said, and it is clearly appropriate, not in all, but in some circumstances. It will be useful to hear what work is being done to provide detailed guidance.

In particular, I wanted to raise an issue that has not yet come up this morning, which is funding for transplantation. There is no use doing what we are doing so successfully to increase the number of donors and to improve the usability of lungs and the techniques that mean more transplants can be carried out because the surgery and the science are there to enable them, if we have not in parallel put in place the funding to ensure that we can pay for an increased number of transplants. The national commissioning team understood well that the funding models had to be designed and progressed alongside and in parallel with the science, the improving clinical strategies and the successful public registration and awareness campaign.

Other interventions, however, are now competing with transplants for funding, while the specialist services budget, which funds transplants, is under pressure and might even face cuts. At the same time, commissioning is moving to local area teams, which will not have the same understanding of some of the decisions that need to be made on transplantation priorities, which risks us moving to an unco-ordinated approach and widening inequality of outcome between centres.

Transplantation risks becoming underfunded even as the numbers that can be treated are on the rise. We have already seen a significant increase in the number of transplants carried out in recent years, and that will increase further as allocation methods improve, donation rates increase and technology allows more lungs to be used. It would be an absolute crying shame if the strides forward in good practice were stymied by a lack of resource or by a commissioning model that cannot optimise the clinical progress and the public engagement being made.

I am, like others, pleased that we have had the opportunity to explore the subject this morning. I look forward to hearing the Minister’s response.

10:34

[Luciana Berger (Liverpool, Wavertree) (Lab/Co-op)]

It is always a pleasure to serve under your chairmanship, Mrs Osborne.

I thank the hon. Member for Strangford (Jim Shannon) for a debate on such an important issue. In his opening remarks, he alluded to others who have encouraged him, so I thank them, too, and the Backbench Business Committee for granting the debate. I thank all hon. Members who have contributed; they have shared their personal connection and the case studies of their affected constituents. Our discussion today is most timely, given that we are in the midst of national transplant week.

Sixty years ago this year, the world’s first successful kidney transplant was performed by Dr Joseph Murray in Boston, Massachusetts. Dr Murray broke new ground when he and his team transplanted a kidney from Ronald Herrick to his dying twin brother, Richard, which saved his life. Today, kidneys are the organ most commonly transplanted, with about 2,000 transplants each year in the UK.

Organ donation is without doubt one of the great success stories of the latter half of the 20th century. This debate and national transplant week provide the opportunity to celebrate such fantastic achievements, to debate the challenges facing organ transplantation and to increase awareness of organ donation. It is welcome to see so many hon. Members showing their support for the campaign.

Over the past century, organ transplantation has overcome some major technical limitations to become the success that it is today. Breakthroughs include developing surgical techniques to manage the immune response and devising preservation solutions to enable prolonged periods of ex vivo storage. The results of organ transplantation continue to improve as a consequence of such innovations and of improvements in peri-operative and post-operative management.

Major progress has been made with the infrastructure and organisation of organ donation, which has led to a significant increase in donation rates. I am extremely proud of the fact that, in 2001, the previous Government said that we would double the number of donors from 8 million to 16 million by 2010; we achieved that a year early, in 2009. The 19.7 million of us on the NHS organ donor register are testament to the changes made at every level—from hospitals to the critical care and emergency department staff committed to donation. Most of all, there is the generosity of donors and their families.

Despite all those astounding achievements, many challenges persist, most notably the shortage of suitable donor organs. We know that the number of potential donors is declining because people are living longer and fewer are dying in hospitals in circumstances where they could donate. Every year in the UK, about 1,200 people die after death has been diagnosed on neurological criteria, with a further 3,000 people dying after the withdrawal of treatment in circumstances where donation is possible.

The hon. Member for Romsey and Southampton North (Caroline Nokes) highlighted the particular challenge of finding suitable child and infant donors. That makes it more critical than ever to increase the pool of willing donors and to encourage more people to join the NHS organ donor register, which includes engaging with parents to consider the gift of life at a time of child death tragedy.

As many Members have said, market research carried out by NHS Blood and Transplant highlights that, although 51% of the population definitely want to donate their organs and 31% said that they would consider it, only 31% have actually signed the register. Twenty years on from the launch of the NHS organ donor register, people may sign up in many ways, such as through an online form, a 24-hour donor line, a text message, the GP or even a driving licence application. I did so when I signed up for my Boots advantage card. Surely even more mechanisms could be used to sign people up—the hon. Member for Strangford mentioned a debate we had on the issue only a few weeks ago, when I suggested supermarket cards. What more could we be doing to encourage people, particularly young people?

A current campaign, led by the Anthony Nolan trust, goes into schools to encourage 16 to 18-year-olds to consider signing up to the bone marrow register. What more could we be doing across all schools?

[Jason McCartney]

The hon. Lady has just raised the campaign by the Anthony Nolan bone marrow trust—it is called Register and Be a Lifesaver. As the hon. Member for Stretford and Urmston (Kate Green) pointed out, there is still an issue when it comes to different ethnic backgrounds. As the bone marrow register has been mentioned, I want to point out that northern Europeans have a 90% chance of finding a bone marrow donor, but that figure falls to just 40% for people from black, Asian and minority ethnic backgrounds.

[Luciana Berger]

I was just about to come to the specific challenges of regional differences and of people from different communities having access to organs. To finish my point about the important campaign by the Anthony Nolan trust, as part of that campaign the organisation wrote to all MPs to encourage us to write to schools in our constituencies to inform them about the opportunity to have the Anthony Nolan trust come in and inform 16 to 18-year-olds about the chance to be a life saver. I want to put on the record that I strongly encourage other Members to write that letter if they have not already done so—I sent mine off only last week—because it is something that we can do as MPs to encourage people locally to get involved.

In response to the hon. Gentleman’s point about specific communities, the challenge, as we have heard from a number of Members, is not simply getting more sign-ups to the register but targeting specific communities and areas that we know are losing out from the stark inequalities in our system. In the north-west, for example, where my constituency is situated, patients are waiting longest for a transplant and we have the highest death rate among those who are waiting: 62.2% of patients in the north-west wait more than six months for a transplant, compared with an average for England of 47.3%. Some 23.2% of patients in the north-west have waited more than 18 months for a lung transplant, compared with an average for England of 15.8%. We need to take regional differences into account.

Many Members have referred to lung donation. My hon. Friend the Member for Bristol East (Kerry McCarthy) referred to the zonal lung allocation system, an important issue that I will focus on in more detail. The Cystic Fibrosis Trust has raised legitimate concerns about that system and is concerned about equity in lung allocation.

Currently the allocation of lungs to transplant centres operates on a rota system. When a donor becomes available, the organs are offered to the closest transplant centre if a matching recipient has been identified. If no suitable candidate is found, the organs are then offered to the next centre, as per the pre-agreed rota. The likelihood of getting a lung transplant and the time frame for the procedure will therefore vary according to where an individual is listed. A donated organ will not currently always reach the candidate most in need anywhere in the country. Will the Minister give her view on the zonal lung allocation system? Does she have any plans to develop a more needs-based system?

It is not just where someone lives that can affect their chance of having a transplant operation if they need one. People from BAME communities are up to three times more likely to need a transplant than others, yet, because organ matching is likely to be closer when the ethnicity of the donor and the recipient are the same, they have to wait much longer. For example, on average a person from a BAME community will wait a whole year longer for a kidney transplant than other patients.

The #Spit4Mum campaign to find suitable stem cell donors for a woman called Sharon Berger—I am not related to her—highlighted the specific challenge of finding suitable donors for members of the Ashkenazi Jewish community. I am a member of that community and I have done my bit to contribute to that specific campaign. But we know that there are many different ethnic minority communities that struggle to find donors of organs and stem cells.

Such inequalities are not acceptable. We cannot accept that some of our citizens will be far more likely to die than others because of where they live or their ethnic background. Will the Minister address that point specifically and outline what concerted action the Government will be taking to tackle it?

Many Members on both sides have raised their concerns about what more we can do to support families in honouring the wishes of their loved ones. It is very difficult when someone passes away, but we know that in 2011-12, 125 families overruled an individual’s intention as recorded on the NHS organ donor register to become an organ donor. Many people do not realise that if they have not made their donation decision clear, their family could be asked to agree to a donation taking place. Nobody wants to leave their family with such a burden, so it is vital that we encourage and support families in having those conversations earlier. The theme of the current national transplant week is “Spell it out”. Will the Minister outline what she is doing to promote that message further? There is a great disparity between those people who sign up and share their intentions with their families and those who do not, and there can then be issues with vetoing.

I will touch briefly on the issue of the opt-out or presumed consent system, which was raised both by my hon. Friend the Member for Bridgend (Mrs Moon) and by the hon. Member for Montgomeryshire (Glyn Davies). There are many obvious advantages to the system. I return to the point I made earlier: there is a gap between the 51% of the population who definitely want to donate their organs, the 31% who would encourage it and the 31% who have actually signed the register. The system will be introduced in Wales in 2015. Any change in legislation will need to take into account the impact of the system in Wales and must have the backing of the public. What consideration is the Minister giving to learning from the introduction of the system in Wales and to introducing a similar system in England?

[Sandra Osborne (in the Chair)]

Order. I am sorry to interrupt the hon. Lady, but I ask her to be mindful of the fact that the Minister has many points to answer in the debate.

[Luciana Berger]

My hon. Friend the Member for Bristol East referred to the international comparison that suggests that there is room for improvement in ensuring that we are making the most of donor organs. The Cystic Fibrosis Trust has pointed out that a large number of donor lungs are never used, despite consent from the next of kin. Lungs from fewer than 25% of brain-dead donors are utilised in clinical transplantation. The need for suitable organs must be balanced against possible risks to the recipient, such as transplanting an organ that does not work properly or transmitting a serious disease from donor to recipient. However, I echo the concerns raised by my hon. Friend the Member for Stretford and Urmston (Kate Green) on donor lungs: there are clinically viable lungs within the 75% that are not used and more can be done to address the issue.

Anxiety over the likely function of an organ largely explains why it is only in a minority of cases that all possible solid organs are used. The Government strategy for organ donation and transplantation, published last year, highlighted that sometimes actions that could be taken to improve the function of a retrievable organ are not taken and the organ is declined. On other occasions, organs declined on the grounds of poor function should have been accepted and implanted. What steps are the Government taking to ensure that we are using as many donor organs as possible? I also echo and reinforce the points made and questions raised about supporting patients who are waiting for organs to ensure that, when the time comes, they are psychologically prepared.

This issue is important to all Members, across the political divide. Anyone in this room could one day need an organ donation or have a loved one who does. We are making progress but we must maintain our momentum. I welcome the Government strategy for organ donation and transplantation set out last year. I am happy to work with the Minister and do all I can to promote efforts to improve organ donation and transplantation, to ensure that anyone who needs an organ transplant has one. I look forward to the Minister’s response.

10:48

[The Parliamentary Under-Secretary of State for Health (Jane Ellison)]

This has been an excellent debate, and I am only sorry that I have less than 12 minutes—slightly less time than the shadow Minister took—to respond. As always, I hope colleagues realise that if I cannot respond to substantive points during the debate I will write to them afterwards.

I will try not to reiterate some of the excellent points made about the backdrop to the debate, but I congratulate the hon. Member for Strangford (Jim Shannon) on securing the debate and on being such a stalwart supporter of health debates generally—we are in this Chamber together very often and it was excellent to see him leading today’s debate. There have been many thoughtful contributions today. I would also like to note that as a former member of the Backbench Business Committee I particularly welcome the fact that it has given Parliament the ability to have timely debates. It is excellent that we are having this debate in national transplant week. The Committee is a real innovation that has worked out well.

I join those who have paid tribute to donors and their families and all those who work in the NHS to make organ donation and life-saving transplants such a success story for our nation. Rightly, however, colleagues have focused on where we can do even better, and I will try to respond to some of their points. I will certainly draw the attention of NHSBT to the many good points that have been made.

It has been well established how many people are on the register of those waiting for a transplant. It is also well established what a success the taskforce set up under the previous Government has been. In the six years between April 2008 and April 2014, we saw a real strengthening of the donation programme, with donation rates going up by 63%, and transplant rates by 47%. However, we know that there is more to do, and programmes in other countries are producing even better results.

We have heard of people—in some cases, we have heard moving personal examples of constituents—who are waiting far too long for suitable organs to be donated, and I will touch later on what NHSBT is doing to work with surgeons in that regard. Sadly, many of those people have lost their lives waiting for a transplant, so it is heartening that the number of people registering for organ donation has increased by more than 3 million since 2010 and is now more than 20 million. I pay particular tribute to people in Northern Ireland for the impressive rates there, which the hon. Member for Strangford highlighted.

The critical issue, and one of the things NHSBT wants us all to focus on in national transplant week—indeed, many speeches did focus on this—is the need for people to discuss organ donation with their family. People need to add their names to the register, but they also need to talk with their families about the fact that they have done so. The shadow Minister and others alluded to the fact that a relatively small number of people die in circumstances where they could be donors, and there is some reason to think that that pool of people might actually diminish. The need for people to have a conversation about registering was movingly explained by the hon. Member for Bridgend (Mrs Moon), who used a personal example that highlighted the issue so much better than any number of statistics could.

The UK’s consent rate is the area of particular concern and focus, because it is one of the lowest in Europe. Last year, four in 10 families said no to allowing their loved one’s organs to be donated. In 2012-13 105 families, and in 2013-14 119 families said no, even though they knew their family member was on the organ donation register. Obviously, it is a real concern that they knew that person’s wishes and still said no.

On the point my hon. Friend the Member for Romsey and Southampton North (Caroline Nokes) made about children, it is worth noting that young people can give consent and go on the register if it is obvious they can make that consent real. If they are judged to be old enough to give consent, they can do so; if they are too young, consent will still be down to the parents. That comes back to the point that it is important to have a family discussion, for all the reasons that have been highlighted, and I will talk a little more about that later.

One group of people who play a really important part, and who have made a contribution to the success of our programme, with its higher rates of donation and transplant, are the specialist nurses for organ donation—the SN-ODs. They do amazing work at an absolutely tragic time in a family’s life, and their specialist training has been one of the critical factors in moving us forward. When we last debated this issue, I said that the reality is a long way from cool, calm debating chambers such as this, where we exchange statistics and thoughts on how to improve things. Many decisions about transplant are made at a moment of great trauma; it might be 3 in the morning, and somebody might not even want to be parted from the body of a loved one who has just died. At that moment, the clinicians have a real duty of care towards the family, who will be very distressed, and the reality is that, operationally, clinicians will not overrule a distressed family who are absolutely determined they do not want to donate. This is about having a conversation beforehand, which, as the hon. Member for Bridgend underlined, is so important.

NHSBT and clinicians are very aware of the possible consequences of getting adverse publicity for overriding a family’s wishes. There is a delicate balance to be struck. I should remind Members that lung transplants need to take place within 12 to 16 hours of retrieval of the organ—for hearts, it is up to six hours. That is not a big window of opportunity, and it comes at a terrible moment. That is where specialist trained nurses such as the SN-ODs are so fantastic. However, we need discussions to happen much earlier.

As these debates always do, this debate has touched on diverse opinions about introducing opt-out. I will not go into that in any detail, because we have rehearsed these issues before. However, I would just say that my hon. Friend the Member for Montgomeryshire (Glyn Davies) is right to say that the jury is out on the international evidence regarding whether it is opt-out or opt-in that makes the difference, rather than a concerted programme of many other things—the sort of things, in fact, that our organ donation taskforce has addressed. The strengthening of donation programmes and other steps have made a significant difference, but we will watch with interest the impact on donor numbers of the proposals in Wales. However, we are yet to be entirely convinced that they alone will make the big difference. Again, if a family are strongly against donation when their loved one has died, their strong wishes will not be ignored and overridden, even in the situation in Wales. This still comes down to understanding what families want.

The “Taking Organ Transplantation to 2020” strategy is very much evolutionary, and it builds on the infrastructure we have in place, particularly as regards response rates. Members have mentioned other aspects of it. One aim is to have 5% more donated organs transplanted. Some of the work going on to support that is on improving organ function before retrieval, improving the function of retrieved organs, reducing the rate of declined organs and supporting surgeons in understanding risk. Work is therefore being done under the strategy on those important issues.

During the debate, Members highlighted lots of the good ideas we are using in promoting organ donation and encouraging people to sign up to the register. The Cabinet Office is working on further initiatives, but it always welcomes suggestions. Everyone involved in policy development on this issue is extremely open to good ideas, and I will certainly ensure that the debate is brought to the attention of colleagues in the Cabinet Office.

I also urge Members to do what they can this week. Tomorrow afternoon, NHSBT is hosting a good event of its own, and I hope Members will attend. There have been lots of suggestions of what Members can do. The hon. Member for Strangford said he is using his Facebook page. We can also use links on our websites and social media—MPs are increasingly good users of social media. This week, people are using #spellitout to try to get a conversation going. I urge Members to support the NHSBT event and to use that hashtag. If they are planning an end-of-term bulletin to their constituents, I urge them to pick this issue out to help spread the word.

As was rightly said, it is disappointing to see both the length of time members of ethnic minority communities are waiting for a transplant and the refusal rate in such communities, which is nearly 80%, compared with about 40% nationally. There is a real challenge, which is why my Department is supporting the National Black, Asian and Minority Ethnic Transplant Alliance in looking at some of these issues and addressing the inequality people from such backgrounds face in waiting for a donor.

In June, I supported the launch of a new project to train peer educators from the Pakistani Muslim community in Birmingham to work in communities to increase rates. Sadly, because of parliamentary business, I was unable to join them on the day, but I have suggested that we ask them to join us later this year in Westminster to talk about the project. I will make sure Members are told of the event at the time so that Members—particularly those of us with diverse constituencies—can come and hear about the experience of those involved. In our previous debate, Members mentioned the challenge of trying to recruit more SN-ODs from within ethnic minority communities, because we face a similar challenge with recruitment as we do with the consent rate.

Earlier this year, following our previous Adjournment debate on this issue, the hon. Member for Bristol East (Kerry McCarthy) and I debated cystic fibrosis, and progress has been made. The point about the zones has also been made. The cardiothoracic organs advisory group has recommended that NHSBT review the consequences of introducing the two levels of priority for listing—urgent and routine—along the lines that have been described. Obviously, it is important to make sure the arrangements do not lead to inequity, and I can assure Members that NHSBT will keep the issue under regular review.

I will be talking to NHSBT imminently, at tomorrow’s meeting. Indeed, I have regular meetings with it. In the half a minute remaining, I want to reassure Members that the organisation is extremely proactive and open-minded, and I find it very receptive to new ideas. Many good, constructive and thoughtful ideas have been put across in the debate. I will have a discussion with NHSBT and ask it to review the debate and to respond to hon. Members through me where I have not been able to respond today. I reassure Members that all good ideas are considered and that we are all working in the same direction: we want to increase donation and transplantation rates and to give many more people a chance of life.

Ministry of Justice Shared Services

Tuesday 8th July 2014 Westminster Hall

11:00

[Paul Flynn (Newport West) (Lab)]

It is a great pleasure to serve under your chairmanship for the first time, Mrs Osborne.

I have an extraordinary story to tell, of Government ineptitude, which will give us a key to their legacy to the nation. It is a story about punishing success and rewarding failure. The shared services in Newport were set up in 2006. It was a happy occasion. There was a lovely building, and thanks to the enterprising action of the council, shared services were welcomed. It was a marvellous idea to take little inefficient units that operated in prisons throughout the country and concentrate them in one centre, to provide a more efficient service and to save money—which it did. It saved £32 million in the first two years. The staff have by now, through their efficiency, dedication and skills, created savings of £120 million.

What do we do now? Shall we alter a winning team and wreck something that works so well? In this case the answer is yes. The Government, with fanatical devotion to the concept that all that is private is good, wonderful and efficient, and all that is public is bad and inefficient—the heresy behind so many of their failures, which we have witnessed in the past few years—decided to set up an alternative, as an improvement. They ran a scheme, which was operated by a group including the firm Steria. They sought a more efficient way of running the system, rather than leaving it alone and letting it continue to make money and savings for the country.

I shall not go too far into the detail of who is to blame, because, as we know, failure is an orphan and it is only success that has parents. However, Steria had a leading role in the operation from 2011. What has it achieved? It has achieved a loss of £56 million. What has it produced? Nothing of any practical value: that is the simple truth. When people make a loss of that kind, what should we do? Should we dismiss them, or forget about them? No. The Government are setting up a new consortium. They will let Fujitsu run the IT this time, but the project is still run by the French company Steria. It has a contract from the Government. We shall be looking for some of the facts from the Minister this morning, but that contract could lead to the loss of jobs or of 49% of the work—we cannot translate that into jobs. It could mean the offshoring of jobs, probably to India.

[Jessica Morden (Newport East) (Lab)]

As my hon. Friend will be aware, the Minister said during questions last week that he is against offshoring jobs in his Department. Does my hon. Friend share my concern about the fact that the Cabinet Office seems to have no such qualms, and does not Steria’s record of cutting and offshoring jobs and closing offices speak for itself?

[Paul Flynn]

My hon. Friend is right. There is general puzzlement about the conflicting statements that come from the Government. Perhaps they can be cleared up this morning. There is a scheme: the jobs will be privatised, and I do not know how the Government can exercise control if that happens. We are told that they are against offshoring jobs. The Prime Minister said so a short while ago; he said he wanted us to “reshore” jobs and bring them into this country. It seems an act of madness to take successful jobs from an initiative developed in Newport and send them overseas, and to spread the profits to a foreign company—a French company.

I am rather surprised when I see the Minister who is replying to the debate, whom I have greatly admired in his political career. We have been in the House a long time, and in his sensible period, when he was a Liberal Democrat, before his metamorphosis, he would have agreed with every word of my argument, as he has on many occasions. The red boxes have a strange effect, and change people’s personalities, but I am sure that it is possible to revert. I was the right hon. Gentleman’s constituent for many years. He used regularly to send me letters and would ask me what the Lib Dems should do for the country. I always made interesting answers and suggestions, not all of which he followed up.

[The Minister of State, Ministry of Justice (Simon Hughes)]

Some I did.

[Paul Flynn]

Some he did, yes. He did not give us eternal life or a Labour Government, which were the main things I thought would be of benefit.

[Bill Esterson (Sefton Central) (Lab)]

I congratulate my hon. Friend on securing the debate. The issue affects my constituents as well, because some of them work at the Bootle site for the Ministry of Justice. They have been commended for their work over many years. They are loyal civil servants and are deeply worried at the prospect of privatisation, losing their civil service status, and ultimately losing their jobs to outsourcing. Does my hon. Friend agree that it is surely the role of Government, and not just constituency MPs, to look after our constituents’ interests and keep jobs in this country for them instead of letting them be outsourced?

[Paul Flynn]

It was touching when my hon. Friend and I talked to our constituents, who went on strike a fortnight ago. For most of them it was the first time they had done that in their lives. They would not have expected to go on strike. One had been displaced from the Passport Office, following another Government scheme to reduce it to such an emaciated state that when there is an unusual call on it, it cannot cope—the system is at the point of collapse. Those people have done nothing wrong. As my hon. Friend said, they have won accolades for their efficiency and service; but now their jobs hang in the balance. There is no certainty. They cannot look forward to a future beyond 12 months.

There is no sign that anything can be working efficiently. I wish the Government would learn the lesson. They seem to be blind on the issue, given what they did in relation to Atos. Atos broke a pledge that helped it to win the £184 million disability assessment contract. That was a story of chaos and loss, and the great suffering of hundreds of thousands of people—because of the inefficiency of Atos. Every MP has heard heartbreaking stories of people who have been misjudged and badly treated by Atos. In four out of 10 cases where the original decision was questioned, the challenge was upheld. That episode was a terrible error.

In addition, G4S had a £284 million contract to provide 10,400 staff for the Olympics; but it fell spectacularly short and we needed 5,000 members of the armed services to come and fill the gap. Where was the brilliance and perfection of the privatised services then? Serco charged taxpayers far too much for monitoring criminals, under a contract dating back to 2005. What happened was a rip-off, and Serco had to repay £68 million. Why give those people, who are little short of criminals in their behaviour, those contracts? Why favour them as we do? Capita, which in the House of Lords was referred to as “Crapita”—we would not use such language here—won a £50 million contract to run individual learning accounts programmes, which collapsed. There were mounting allegations of fraud among the programme providers and concern about the costs, which went £93 million over budget.

The Ministry of Justice had a £42 million contract for interpretation in the courts, which stalled at the outset after being given to a small company that Capita acquired to run the contract. Some 6,417 complaints were recorded by Capita, and 680 trials in magistrates courts and 34 Crown court trials were ineffective as a result of interpreters not being present.

There is a long catalogue of a Government favouring private firms over the well-established civil service ethic and systems that have served us well, and they are about to do the same again. Will the Minister tell us, and make it clear to my constituents and those of my hon. Friends the Members for Sefton Central (Bill Esterson) and for Newport East (Jessica Morden) and others, what the position is? Are their jobs in danger of being sent offshore? Will he give an absolute guarantee that that will not happen?

[Bill Esterson]

I am interested in what my hon. Friend says about security because the issue has also been raised with me. My constituents are very worried that in an answer I received from the Secretary of State last week he ruled out being able to protect any of the jobs. Not only will they lose their civil service status, which is much valued, they will lose their jobs. When they stop being civil servants, they will not be able to apply for vacancies elsewhere in the civil service because they will no longer be civil servants. That is a real concern for them, as is the suggestion about outsourcing and jobs going overseas that my hon. Friend mentioned.

[Paul Flynn]

My hon. Friend makes a powerful point that we are very much aware of. Civil service status is prized. We have forgotten to appreciate the value of civil servants, which has been neglected. In the last 24 hours, a Minister was highly critical of the civil service ethic and attacked the core of the civil service, which has benefited us so richly for the past 150 years. There is a move towards politicising civil servants. Many of my constituents work for the civil service, often not for very great salaries. The Government’s failure to appreciate their value and worth is a terrible blow and an act of ingratitude.

My constituency and many other places in Gwent have benefited from the influx of civil service jobs. We suffered greatly from the loss of manufacturing industry and the fact that the Patent Office, the Office for National Statistics and the shared services centre came to my constituency saved the economy in a way that is greatly valued. The city and the country—Wales—have a huge amount to lose if the Government behave in this cavalier way with civil service jobs. They should have the security of a continuing contract, and richly deserve loyalty from the Government. I look forward to the Minister’s assurance on that. People should not have been driven to strike, but who cannot appreciate their anger against an ingrate Government?

At the World Economic Forum in Davos on 24 January, the Prime Minister referred to reshoring jobs and said he wanted Britain to become the “reshore nation”. He announced the creation of a new Government body to encourage companies to locate in the UK jobs that would once have gone to the far east. We seem to be seeing the reverse. A Minister said in the House last week that he was against exporting jobs and siphoning them off to other countries. That is now becoming unpopular because people do not like dealing with confusing accents and it is no longer as commercially attractive as it once was. It does not seem to be the future. The Government’s duty is to remain loyal to their staff and to return the loyalty and skills of the workers by believing in them and fighting for their jobs, not to desert them and leave them with considerable anxiety and worry, and perhaps worse ahead with loss of employment and destitution.

11:15

[The Minister of State, Ministry of Justice (Simon Hughes)]

It is a great pleasure to serve under your chairmanship, Mrs Osborne, I think for the first time. I warmly congratulate my colleague, the hon. Member for Newport West (Paul Flynn), who is a former constituent. I did not drive him out. It was his choice, and I was happy to have him living near Elephant and Castle. I understand absolutely his continuing and proper interest in the matter. As he knows, I know Newport fairly well. It is a great city, which became a city relatively recently, which was hugely welcome. He was correct in saying that following the industrial decline of that part of south Wales, where I lived when I was growing up, the ability to have new initiatives such as the Office for National Statistics and other departments, such as the Patent Office, and the shared services centre has been healthy. That is self-evident in the beneficial effect on the economy.

I also welcome the hon. Member for Newport East (Jessica Morden) and her interest, and acknowledge the presence and interest of the hon. Member for Sefton Central (Bill Esterson) who, understandably and rightly, wants to speak up for his constituents who are employed by the Ministry of Justice. I will return to the numbers in a moment.

I want to make a couple of general propositions. First, in case the hon. Member for Newport West has any doubts, I have never changed my view about the politics and assessment of the public and private sectors. I do not have a simplistic view that all private is good and all public is bad. That has never been my view. I have always believed that there may be good public services and good private activity. I also observe that while I have been in this place and he and I were in different positions because I was on the Opposition Benches and he was loyally—sometimes loyally, but often constructively and critically—supporting his Government who were going down the same road in outsourcing and introducing contracts with the private sector for previously public sector jobs. Since I have been in this place, there has been a debate about what jobs should remain civil service and local government jobs, and what should be in the private sector. That is nothing new. It is not a creation of this coalition Government.

I will deal with the key facts and then, I hope, most of the concerns. I am here to listen and it is good that the hon. Gentleman has secured this debate so soon after the latest stage in the process of deciding what will happen to the shared services, and the consultation starting with the unions last month. As he knows, the whole ministerial team is fully apprised of the concerns of those who represent people in this work. There was evidence of that at Justice Question Time last week when a series of questions about that was rightly asked.

[Bill Esterson]

The Minister made a point about outsourcing jobs being nothing new, and there has always been a balance between public and private involvement in public services. The difference this time is that Steria’s track record is open to question, and the £56 million write-off on the IT project is a great example. The question put to me by my constituents was why was there no involvement by staff and the trade union in the in-house bid? Why was it carried out in what they believe were questionable circumstances and why were they not able to win, given the efficiency and high quality, and commendation of their work over many years?

[Simon Hughes]

I am going to try to make these points, because I hope I can address such concerns. If there are any remaining issues and some time available, I will be happy to take further questions.

I ought to add that I saw a bit of the “Newsnight” programme last night; it was actually a former Minister, rather than a current one, who was talking about the civil service. I hope that we would all join together in saying that we think our civil service is an ace organisation. It is one of the best public services in the world and we respect everybody in it. Certainly, as a new Minister in my Department, I want to thank the civil servants who work for us—not just in the Ministry of Justice, but in other public Departments—for the public service that they give.

I entirely understand that a change of the kind being proposed is hugely worrying for staff affected. That is obvious. I know that many valued, hard-working staff in Newport, Bootle and elsewhere will be concerned about the potential impact of the changes on their lives, and I will do what I can to give reassurance, as well as sharing the facts as accurately as I can.

We are talking about just over 1,000 people working for MOJ shared services. The figures I have been given, going up to today, are that the full-time equivalent number in Phoenix house in Newport is 725 and that at Redgrave court in Bootle, it is 103. Here, in Petty France, there are 67 full-time equivalents in the shared services department. There are 31 in the Prison Service college, although they may not in the end be affected, and there are 154 in nationwide teams, so we are talking about just over 1,000 in total.

As part of the shared services reforms, which are part of a wider civil service reform programme, the majority of those staff will transfer to one of the two independent shared service centres, which have been created to work across a wider range of Government Departments and services. Subject to contract, which has not been awarded yet, the independent shared service centre, to which the majority of Ministry of Justice shared services staff will transfer, is, as colleagues know, to be managed by Shared Services Connected Ltd, or SSCL. That is a joint venture between the Cabinet Office and, yes, Steria Ltd, which already manages services on behalf of the Department for Work and Pensions, the Department for Environment, Food and Rural Affairs and the Environment Agency. The Department for Business, Innovation and Skills is also moving its shared services across. The other company deals with much smaller parts of the civil service organisation.

The decision to move to this company was taken following a full evaluation of both the independent shared service centres and the option to remain in-house in the Ministry of Justice. The reason why SSCL was chosen as the preferred framework provider was that it provided the most competitive solution, which—this is very important for all constituents, including mine, those in Newport and those in the north-west—provided the potential to deliver significant savings to the taxpayer. The evaluation criteria included people impact, service delivery, cost and IT.

[Nick Smith (Blaenau Gwent) (Lab)]

Will the Minister give way?

[Simon Hughes]

I will in a second. The SSCL proposal was the strongest, in part due to the investment that it is already making in a new IT platform and the fact that the costs could be shared across multiple Government Departments—I will carry on, because I am conscious of time, but I will try and give way later.

I want to reassure colleagues that, as I hope they know, anybody transferred, if the contract is entered into, will be protected by the TUPE arrangements, so their employment will transfer across to any new employer. There will be no overall detriment to their terms and conditions or their pensions. The current arrangement is that the Ministry of Justice has secured at least 12 months’ job protection, starting from October 2014, when the transfer to SSCL is due to take place. If the transfer does go ahead this autumn, the jobs will be secure as well as all the transferred rights for 12 months after that. As part of the agreed protections, we expect all MOJ sites to remain open for at least the first year after transfer to SSCL.

I appreciate that staff have concerns about job security beyond that. I fully understand that, but obviously I cannot make specific commitments beyond the agreement that has been negotiated.

[Nick Smith]

On that point, will the Minister give way?

[Simon Hughes]

In a second, if the hon. Gentleman will allow me to continue. It is worth bearing in mind that the addition of the MOJ and the Home Office to the independent shared service centre will almost double its number of users. That gives it a strength, a credibility and a potential that, I would have thought, strengthens its future. Staff will still be required to provide services for those users and I can tell people in south Wales, the north-west and elsewhere that absolutely no decisions have been made to close any MOJ site.

[Nick Smith]

I thank the Minister for giving way. I am glad that earlier he acknowledged the importance of these sorts of jobs to the south Wales economy—particularly the Patent Office and the statistical service. Newport is wary about what is happening, as are the south Wales valleys just north of it. What steps is the Minister actively taking to stop these jobs being offshored? It is really important that he addresses that point.

[Simon Hughes]

I was going to make that point next, so I shall make it next as planned. I understand the hon. Gentleman’s interest, as an MP not far away from Newport.

There is obvious and understandable concern about any offshoring, following a transfer. First, there has been no decision to offshore any Ministry of Justice shared services work. Secondly, I tell all hon. Members—the hon. Member for Newport West and his colleagues—that should there be any such proposal, it would need the specific agreement of the Ministry of Justice. I therefore repeat the fact that the Secretary of State has made it absolutely clear that he would not support such a proposal. Given that this is the first opportunity I have had to speak on the issue, I make it clear that I would not support such a proposal either. It seems to me that we have an obligation, particularly in those services that do key jobs for the public, to have the jobs done in this country, and the Ministry of Justice has been very clear that it will retain the right to make a decision in relation to any such proposal.

[Jessica Morden]

Will the Minister give way?

[Simon Hughes]

No, I am going to finish what I have to say, otherwise I might not be able to complete my remarks in the time. The Secretary of State made a commitment and we have had reference to the commitments from the Prime Minister. I repeat the commitment to British jobs here in the UK, and I hope that that is very clear to everybody.

[Paul Flynn]

Will the Minister give way? There is an important point here.

[Simon Hughes]

Yes, all right.

[Paul Flynn]

Who will take this decision? There seems to be a different view in the Cabinet Office on this. Can he give a guarantee that the Ministry of Justice will have an absolute ban on these jobs going abroad?

[Simon Hughes]

I have not been in post since the beginning of this whole debate, but according to my understanding, the deal is that any such proposal to offshore would require the consent of the Ministry of Justice, and the current Secretary of State has made it clear that while he is in office, he would not give that consent. I repeat that on my own behalf and on behalf of the Ministers in the Department.

[Bill Esterson]

Will the Minister give way?

[Simon Hughes]

No, I cannot give way—if I can in a second, I will.

Although I have been as categorical as I can, I completely understand that there will be concerns. Change is of course destabilising and upsetting, and no one wants an uncertain future, but the reason why this is being done and why Government have made this sort of decision over the years is that, if we have to make our financial ends meet and to balance our budget, we have to ensure that we deliver public services in the most efficient way possible. Money spent on paying debt is not useful, and paying more than we need to run our public services means that money cannot be spent on other things that we all think are justified, such as the NHS and education.

It is, of course, right that we look to reform how the Government deliver savings and at more efficient ways in which to deliver back-office functions such as HR, finance, procurement and payroll. The civil service is therefore, by definition, moving towards being a leaner and more efficient machine.

May I deal with one matter raised? Steria was selected for the joint venture following competitive and rigorous testing. It is true that Steria was one of a number of suppliers involved in the previous programme. Several other parties were involved, however, and it is not right to conclude that Steria was the cause of the issues with the initial programme, which clearly went wrong. As it happens, Steria was involved with the IT on the previous programme, whereas the IT for the current programme was contracted to Fujitsu, as has been said. It is not possible to make an exact comparison.

The Department would not be pressing ahead with the reforms if it did not have confidence that SSCL was the right option for the future of MOJ shared services. We will listen to the workers in the work force and to their representatives. In the end, I hope that the result will be good for Newport and Bootle, and for the people who work there.

11:30

Sitting suspended.

Global Health (Research and Development)

Tuesday 8th July 2014 Westminster Hall

[Mr Gary Streeter in the Chair]

09:00

[Mr Gary Streeter (in the Chair)]

Before I call Mr George to introduce this important debate, I should point out that seven colleagues have expressed a wish to catch my eye, and that will be during a period of 50 minutes. If Back Benchers, not including Mr George, can restrict themselves to seven minutes each, that will give the shadow Minister and the Minister enough time to wind up the debate.

[Andrew George (St Ives) (LD)]

It is a pleasure to serve under your chairmanship, Mr Streeter. I am delighted to have secured this debate on research and development for global health, particularly in the week when the all-party group on global tuberculosis, which I co-chair with the right hon. Member for Arundel and South Downs (Nick Herbert), publishes its report “Dying for a Cure: Research and Development for Global Health”. The role of all-party groups on health generally, particularly health in developing countries, is an important dimension of the work of parliamentarians. We often have opportunities to expand and probe these issues, which are important to many of our constituents; it is also important, of course, that we as a country play a leading role in the world in this respect.

This afternoon, I hope to provide a canvas on which hon. Members more expert than I on this subject can add their own, more expert comments. I want simply to go through a number of themes that I think are important for the Department for International Development as it develops its leading role in addressing the urgent need for advances in research and development for global health. I particularly want to emphasise the issue of tuberculosis.

The incidence of tuberculosis is falling marginally year on year. Currently, there are 8.7 million new cases each year. Tragically, 1.3 million people die of the disease, and there are about 650,000 cases of drug-resistant tuberculosis. That is largely a man-made disease, because of inadequate treatment with front-line drugs. Only about 10% of those cases are getting adequate access to diagnosis and treatment.

We in the United Kingdom cannot isolate ourselves from the issue because there are about 9,000 new cases of tuberculosis in this country each year, and the London area is the capital of Europe as far as tuberculosis is concerned. There were more than 400 new cases of drug-resistant tuberculosis in this country in one year, and that number is going up. This disease should concern us domestically as well as internationally.

We need to bear in mind not only the tragedy for those who contract the disease and their families, and the further tragedy for those who die from the disease; there is also, of course, a significant burden on the public purse. It costs £5,000 to treat a patient with first-line tuberculosis drugs and £50,000 to £70,000 per annum—sometimes, a great deal more—to treat drug-resistant forms of tuberculosis.

An estimated 13.7 million people die every year from, or in connection with, a group of diseases known as poverty-related and neglected diseases. Those include TB, HIV, malaria, dengue, yellow fever and others.

Research and development is, of course, expensive. There are some estimates that developing a new drug through commercial routes costs at least $l billion. Pharmaceutical companies invest in developing products with the potential for a significant financial return, to pay for the original development costs and ultimately to make a surplus—a profit. They are not charities, and that is what their shareholders would expect them to do.

In addition, as the diseases I have mentioned primarily affect poor people, there is often no financial market to incentivise commercial sector pharmaceutical development. Accordingly, very few new products, whether they be new drugs, new diagnostics or new treatments, are developed. There is therefore a market failure in the development of drugs, diagnostics and vaccines for diseases that predominantly have an impact on low and middle-income countries. Although pharmaceutical companies will be developing the Viagras of this world for the west, it seems that crucial drugs that would save millions of lives in the developing world are very difficult to advance at all. That market failure is similar to the failure of the commercial sector to develop new antibiotics. Again, that is because there is insufficient financial return on offer for such products.

In the absence of the commercial sector, public and philanthropic organisations attempt to fill the gap, but progress is slow. There are significant improvements to be made in co-ordination, the level of financing and the policies of public sector donors. There is a wider concern. The World Health Organisation, in its report in April, identified—rightly, I think—the serious risk of antimicrobial resistance as a very significant challenge for the world in the coming years.

Of course, it was very welcome that last week the Prime Minister announced a commission to undertake a wide-ranging, independent review led by the internationally renowned economist Jim O’Neill. It will look into the whole issue of antibiotic resistance, about which many Members of the House have been most concerned.

A lot of us are concerned about the improper prophylactic use of antibiotics generally, in many sectors. Of course, when we look at tuberculosis, we also see a significant problem in some countries. Often it is in the private sector, where drugs are doled out as first-line responses but the health systems are not in place to ensure that the patients will complete the course of treatment. That significantly increases the risk of drug-resistant tuberculosis.

Tuberculosis has been traced back 70,000 years, and the period for malaria is similar, but for the majority of that time the best cure for patients was rest, fresh air and lots of hope. In the 19th century, as many as one in four deaths in the United Kingdom were attributable to tuberculosis. Obviously, we have concerns now about the advancement of drug-resistant tuberculosis. If we are to avoid that fate and to accelerate the progress made against HIV, TB and malaria during the past decade, we must find new interventions that are more effective against these diseases and that can help to drive them towards elimination.

Of course, there is, as we fully understand, a commercial development process. Those of us who have been following the advancement of candidate vaccines for tuberculosis, for example, have been encouraged by the work of many companies, but we are talking about something that fundamentally requires public sector intervention and support. The pharmaceutical companies backing the initiatives are not putting all their money and resources up front; a partnership with Government is required.

Although many early scientific advances in disease control were discovered with public or philanthropic money, most pharmaceutical development is now carried out in the commercial sector. The costs of researching and developing a new treatment, vaccine or diagnostic can be extremely high, and estimates for the cost of drug development run to billions of dollars. Because of the high cost of research and development, pharmaceutical companies inevitably target their resources towards diseases and conditions likely to yield a financial return. That means that most companies focus their efforts on diseases and conditions that affect the west or developed countries, because those markets can pay the most for new drugs.

Another significant impediment is that when companies develop their products, they maximise their profits and protect their interests and investment by securing patents. That gives those companies monopoly rights, which may make the prices for the drugs so high that patients in poorer countries cannot afford them. That is a problem of access. Problems related to research and development for global health will not be fixed unless treatments are developed and made accessible to everyone who needs them. In the face of such market failure, alternative models must be created to ensure that those medical products are being developed, even if not through a commercial route.

[Mr Stephen O'Brien (Eddisbury) (Con)]

Will my hon. Friend give way?

[Andrew George]

I will just make my next point; my right hon. Friend may be pleased when I have. Thankfully, such models exist. Product development partnerships are an important group of organisations that work with academic, public and private partners to try to develop important new products where the market has failed. The Department for International Development, as my right hon. Friend knows from his work as an excellent Minister in that Department, is the world’s leading public funder of PDPs.

[Mr O'Brien]

I congratulate my hon. Friend on securing this timely and important debate. I draw the attention of the House to my registered interests in the field—albeit that they are all pro bono, I hasten to add—and I apologise for the fact that I cannot stay for the whole debate.

My hon. Friend is driving towards an optimistic point. There has been a model that has helped the normal incentivisation of product development through a potential return from a purchasing power market, so it seems to me that we have great grounds for optimism on diseases of poverty—malaria, HIV/AIDS and tuberculosis, but also the neglected tropical diseases where the motivation is often not to avert death but simply to improve well-being. DFID, as a partner, has been tremendous in its commitment not only to commissioned but to operational research, which is fundamental. I urge my hon. Friend to look at the growth and sustainability of public-private product development partnerships, because I think they are one of the most significant ways forward.

[Andrew George]

My right hon. Friend is much respected in his field, and I am sure that the Minister heard what he had to say. The leading role that DFID plays in funding and encouraging PDP is commendable and should be extended.

I want to ask my right hon. Friend the Minister some questions about DFID’s role regarding PDPs and the funding of research and development. It is important that DFID continues to be respected in the world as a leading player, so I would be grateful if my right hon. Friend agreed to look at lifting the apparent cap on the funding of research and development from, as I understand it, about 3% to perhaps 5% of DFID’s total budget. I know that funds need to be found from elsewhere, but I believe that that is an important issue.

I would be interested to know what my right hon. Friend has to say about the Department’s plans to take PDPs forward. Notwithstanding the Prime Minister’s welcome announcement last week of a commission on antibiotic resistance, will DFID press ahead with finding solutions in areas where we already know about problems of antimicrobial resistance, and not simply use the commission as an excuse to delay action in areas where problems have already been identified and research and development are urgently required? Will the Minister ensure that research and development include not only the development of pharmaceutical responses, but diagnostics research into biomarkers and bio-signatures, and the development of point-of-care and non-sputum-based tests for adult and paediatric tuberculosis?

I do not want to detain the Chamber for longer than necessary, particularly when so many others wish to speak. I want to highlight the importance of the work of the all-party group on global tuberculosis—particularly the report, which I encourage hon. Members to look at and which is on the group’s website. The Government must make sure that we sustain our leading role in research and development. We must recognise that there is a limit to what commerce can do, in terms of funding and creating sufficient market incentives, to put in the enormous amount of work required to fill the gap in research and development. That work must be sustained, and we must not simply wait for the commission on antibiotic resistance to provide the stimulus to take it forward.

14:46

[Frank Dobson (Holborn and St Pancras) (Lab)]

I congratulate the hon. Member for St Ives (Andrew George) on securing the debate. I have the privilege of representing probably the biggest concentration of biomedical research institutions in this country and in Europe, if not in the whole world. I must declare an interest as a member of the court of the London School of Hygiene and Tropical Medicine, and as a governor of the Royal Veterinary College—I believe I was originally the Privy Council governor.

The role of the London School of Hygiene and Tropical Medicine in this matter is obvious, because of its remarkable record of more than a century. It has tended to draw on home-grown talent, but it increasingly attracts people of worldwide distinction to do their research there. A splendid example of that is the present director, Peter Piot, who in the 1970s played a major role in identifying Ebola, and in the 1980s in helping to combat HIV/AIDS in Africa.

The reason for the inclusion of the Royal Veterinary College may not be quite so obvious, but the institution has done a great deal of work on the health of animals, particularly farm animals, in developing countries. That work has focused on improving those animals’ resistance to disease and thus helping to counter poverty, malnutrition and poor health. In more recent years, the college has put a huge amount of effort into zoonotics, which concerns the possible transfer of diseases from one species to another, and particularly from various other species to ourselves. The Royal Veterinary College has developed an expertise in avian flu that is unrivalled anywhere in the world.

Recently, Professor Dirk Pfeiffer and Dr Guillaume Fournié, in collaboration with the London School of Hygiene and Tropical Medicine and the university of Queensland, have started on a project on the zoonotics of poultry in Bangladesh. Professors Javier Guitian and Jonathan Rushton have started to do some immensely important work on brucellosis, also in collaboration with the London School of Hygiene and Tropical Medicine, in west and central Africa. Together with Professor Eric Fèvre of the university of Liverpool and in collaboration with the universities of Edinburgh, Nottingham and Nairobi, Professor Rushton has been doing a lot of work on zoonoses in livestock in Kenya. All that is soundly based research, in the field, with practical application.

If there were outbreaks of diseases caused by zoonotics, the poorest and least healthy people in the world would suffer most, but we too would suffer. Having looked at Professor Pfeiffer’s work, I have come to the conclusion that although we hear a lot of talk about weapons of mass destruction, both nuclear and chemical, in terms of worldwide death the most likely weapon of mass destruction is going to be an infected chicken. We must take the matter extremely seriously.

Along with Birkbeck college, the Institute of Neurology and the School of Pharmacy at University college London are doing important work in this sphere, and they are soon to be joined by the Crick Institute. He takes a lot of stick, but I must say that the institute will be there because of the drive of the previous Prime Minister, my right hon. Friend the Member for Kirkcaldy and Cowdenbeath (Mr Brown), who battled through all the bureaucracy that was obstructing it and used his authority as Prime Minister to secure the site and the funding. It is to the credit of the current Government that they took up that baton. We must keep up and extend our research in this sphere, particularly university and public funding.

The question then arises—it has already been mentioned and I am sure it will be mentioned by others—as to whether such work will be worth while for drug companies. It will not. It is no good pretending: in certain circumstances it will not be worth their while, so we must find a worldwide mechanism to find the funds and create the practical application worldwide. The G7 and the G20 need to turn their attention to this issue. They are very good at globalising capital flows, but they need to be concentrating on globalising medical flows. Perhaps we could link the two together with a worldwide Robin Hood tax on financial transactions, but not just for the money.

We need well-organised, practical projects, the best example of which was the World Health Organisation’s commitment to eliminate smallpox. Edward Jenner did his work in 1798; the last person to be treated for smallpox that was caught in the wild was treated by my late good friend, Professor Richard Madeley, who was subsequently at Nottingham university and treated a child in Bangladesh 200 years after Jenner first did his work. We clearly have to ensure that technology transfer speeds up. We do not want it to take 200 years—we do not want it to take 200 weeks. When things are discovered that work and will improve people’s health worldwide, we need the world institutions to put in place a mechanism that will ensure that everyone gets the treatment, not just us privileged folk in the developed countries.

14:53

[Nick Herbert (Arundel and South Downs) (Con)]

I am grateful to be able to take part in this debate and I will speak briefly. First, I congratulate my hon. Friend the Member for St Ives (Andrew George) on securing the debate. I am very proud to co-chair the all-party group on global tuberculosis, which he and I co-founded with our Labour co-chair, the hon. Member for Ealing, Southall (Mr Sharma). I am also very proud of the report that we have just produced, to which my hon. Friend referred, “Dying for a Cure: Research and Development for Global Health”, which covers precisely the issues he has raised in this debate.

May I say in parenthesis that there is much debate about the support provided to all-party groups. Our report simply would not have been possible without our all-party group’s first-class secretariat, which is funded by Results UK and other organisations and has enabled our excellent researcher, Matt Oliver, to help with the drafting of the report. That goes to show that not all external support for all-party groups is bad—far from it. Without that support we simply would not have been able to produce the report. It is important that Members speak up for legitimate all-party groups that have important work to do.

I want to focus particularly on tuberculosis, which still kills 1.3 million people a year—quite unnecessarily, given that it is a treatable and curable disease. There is a particular new threat because of drug resistance, which is a serious problem and a concern not just globally but in this country. I commend the Prime Minister’s stance on the significance of drug resistance as an issue that this country has to address in future. Our all-party group was reminded of that recently when we travelled to Bucharest in Romania and visited prisons and clinics around the country where TB is prevalent—not just TB but drug-resistant TB. In Romania, as well as in other developing and underdeveloped countries throughout the world where TB is a serious problem, the issue is not just access to drugs, which can of course be corrected by the west making significant interventions through the global health fund and other means to provide drugs where they are available; it is also a problem of availability.

Our report seeks to address the simple fact that there is insufficient availability of diagnostics and treatments for tuberculosis. I have mentioned this in a previous debate on the same issues in this Chamber, but I want to repeat myself because it is important: it is sobering that if TB had resurged in the west, pharmaceutical companies would by now have found the investment required to produce significant new tools for its diagnosis and treatment, as has happened for HIV. Amazing new cures and treatments are available for HIV. Why? Because HIV has been a disease of the west as well as cruelly affecting the developing world.

Although it has made something of a comeback in the west, TB has not been perceived in the same way. It has continued to claim the lives of millions, but only in developing countries, so it has not received the attention. Nor are there the straightforward financial incentives for pharmaceutical companies to develop the necessary tools. There is still no vaccine for TB. People believe that there is, but there is not: the BCG vaccine is partial and relatively ineffective for adults.

The first-line drugs that are used to treat TB were developed decades ago, must be taken over an extended period and are part of the reason why drug-resistant TB is a problem. The diagnostics for TB are old-fashioned and inadequate. All this is not the fault of drugs companies; in a free market they simply do not have the commercial incentive to develop new tools because there would be no market for them to sell to.

[Mr O'Brien]

I am grateful to my right hon. Friend for giving way to me, particularly on my second intervention in this debate. I have just returned from Papua New Guinea, where, given my interest in malaria, it was impressive to see Oil Search—to refer to his point about delivery—delivering across extremely difficult and hostile territory, in the complete absence of any other form of provision. Multi-drug-resistant tuberculosis was its main challenge. Often, pharmaceutical, distribution and oil and petrochemical companies are becoming part of the solution as they extend their provision, whether that includes GSK considering the pricing of its malaria vaccine or Novartis distributing malaria drugs. Equally, on TB, Oil Search is becoming part of the solution as part of its extended corporate social responsibility, as well as ensuring research and development for non-purchasing-power markets. I thoroughly endorse where my right hon. Friend is taking this debate.

[Nick Herbert]

I am grateful for my hon. Friend’s intervention. I think that corporate social responsibility can be part of the solution, but it will not be a sufficient solution. What we have here is significant market failure. Where there is market failure, there is an imperative for Government intervention. One can still believe in markets—the power of markets, and pharmaceutical companies’ freedom to do all the wonderful things that they do—yet understand that where there is market failure, there must be intervention. That is what we need. Given that it can cost about £1 billion to bring such drugs to the market, intervention is necessary, whether in the form of product development partnerships or an adjustment to tax credits for research and development. We make that particular proposal in our report, and I commend it to the Minister. That sort of intervention and Government support for research and development will be essential if we are to beat those diseases.

14:59

[Michael Connarty (Linlithgow and East Falkirk) (Lab)]

I declare an interest: I went numerous times with Results UK to see its work on the GAVI fund and other matters. I thank the hon. Member for St Ives (Andrew George) and his co-chair for outlining the problem that we face in R and D for global health. An estimated 13.7 million people die every year from or in connection with a group of diseases known as poverty-related and neglected diseases, including TB, HIV, malaria, dengue fever, yellow fever and many others.

As has been said, there has been a market failure in developing drugs, diagnostics and vaccines for diseases that predominantly impact low and middle-income countries. Significant improvements could therefore be made, as the co-chair of the all-party group said, in co-ordination, financing and the policies of public sector donors. The World Health Organisation has been the focus of efforts to develop a globally binding convention on R and D for nearly a decade, but has not made much progress. Progress has been dishearteningly slow, and given the figures that I just quoted, every year that passes without globally co-ordinated efforts to remedy the R and D market failure results in the unnecessary loss of millions of lives. However, despite that massive figure, we do not seem to get any progress.

One of the core proposals is for countries to contribute a fixed percentage of GDP to R and D for global health, as we have done with international development generally, in recognition that such diseases represent a threat to global human, social and economic development, just as the matters on which the Department for International Development focuses its contributions do. The percentage called for is 0.1% of GDP, which could be spent bilaterally or contributed to a central fund that would apportion money for key projects and programmes to develop the new drugs, diagnostics and vaccines that are missing.

What are the challenges of reaching such a consensus? Among donors, there is a general reluctance to support a global R and D convention; the push for it is coming from developing countries. The countries that conduct the majority of research and host the biggest pharmaceutical companies want to maintain their sovereignty over their research programmes. Countries have competed over scientific research for centuries, and it is important to developed economies. Many Governments even direct money from their aid agencies directly to domestic research only. The UK can be proud that it does not do this, meaning that DFID’s contributions and aid are spent on the best research, wherever it is carried out. Nonetheless, co-ordination of funding and priorities is extremely important to ensure that there is no unnecessary duplication between research in different countries. I see the sense in that, but of course it is not how the capitalist market works.

Why should the UK back such reforms? First, they are ultimately in our own self-interest and that of other developed countries; I always like to appeal to self-interest when a Conservative Government are in power. We will not eliminate TB or HIV unless we find quick, safe and effective cures for those diseases. They have a small but significant presence in the UK: HIV treatments alone, for example, cost the NHS more than £630 million every single year.

[Frank Dobson]

Is it not also the case that in order to protect blood products and blood transfusions, this country has been spending the best part of £1 billion for the same reason?

[Michael Connarty]

I know that when my right hon. Friend, a former Health Secretary, speaks, he tells only the truth, so I accept that £1 billion figure. It is a frightening sum, and it could be used in other ways. If we return to a situation in which TB and HIV are essentially untreatable, the cost of handling those diseases in the UK could become more costly than investing in finding further cures.

The second reason is that UK academic institutions are some of the best in the world, as my right hon. Friend the former Health Secretary outlined. It would therefore lead to more money, not less, being devoted to UK research establishments. Thirdly, the reform process could lay the foundation for new mechanisms and new systems of developing drugs, diagnostics and vaccines that would otherwise never be brought to market under the competitive capitalist system. The co-chair of the all-party group mentioned antibiotics, which have recently been brought to our attention. A global convention could implement new approaches and prevent microbial resistance, which has been discussed by the Government and the Chief Medical Officer.

Fourth, as a major funder of global health programmes and with their stated 0.7% commitment, the UK Government must acknowledge the enormous benefits of accelerating progress against HIV, TB and other diseases. From treating diseases, we could turn to preventing them. In Cambodia, Kenya and Rwanda, I have seen the cost of treating diseases once they have caught hold in a country. Driving those diseases back will result in savings for country health programmes, improved health and educational outcomes for children, increased work productivity for adults and overall reduced dependency on preventive foreign aid, which is the model that we want. We want to raise people out of complete dependency so they can generate their own futures.

A WHO convention, bringing new money and new resolve to global health R and D, is the best way to develop a new intervention that will accelerate our progress against global diseases. I have a question for the Minister, although I must apologise for the fact that I cannot remain in the Chamber for his reply, as I will be trying to speak in the debate on the Modern Slavery Bill, with which I have been engaged for the last couple of years. Will DFID and the UK Government commit to supporting a WHO convention on R and D in 2016 and lead the world towards the eradication of some of mankind’s deadliest diseases?

15:08

[Heather Wheeler (South Derbyshire) (Con)]

I congratulate my hon. Friend the Member for St Ives (Andrew George) on securing this important debate on the future of global health, and specifically on the current position of research and development. I call Members’ attention to my trip to Ethiopia in the Register of Members’ Financial Interests. It is a pleasure to speak under your chairmanship, Mr Streeter.

I will focus my comments on the diagnostics aspects of research and development, which I was fortunate to witness and learn about at first hand during my time in Ethiopia. As part of our trip, we were taken around a hospital and shown an incredible set-up for diagnosing tuberculosis. The incidence of TB in Ethiopia is 274 cases in every 100,000 people, which ranks the country at approximately 20th in the world. That ranking is extremely good for a low-income country, thanks to its excellent diagnostic skills.

Diagnostics are often the forgotten third in the trilogy of drugs, vaccines and diagnostics. We need to change that thinking radically, as failure to diagnose diseases quickly is one of the key factors in the continuation of major epidemics. As Ethiopia has shown, excellent diagnostics can have a dramatic impact on reducing the incidence of infectious diseases. Shockingly, as many as half of those with HIV worldwide are undiagnosed, and one third of those with TB are not officially diagnosed or treated. We desperately need to rectify that, because the lack of diagnostics and of swift care and treatment can exacerbate endemics and heighten immunity to vaccination.

Specific diagnoses are extremely stilted, so it is imperative that doctors take the time to ascertain which strain of the disease the patient has. For example, TB can be drug resistant, but it can take months for tests to determine which drugs a strain of TB is resistant to. In the meantime, doctors often put patients on a standard regime of drugs, which can be disastrous, because some TB drugs unfortunately have severe and often permanent side effects, with several patients being left permanently deaf as a result.

DFID money has helped to develop GeneXpert, a machine that can diagnose TB in two hours and that can also diagnose certain strains of drug resistance. It is because of GeneXpert that patients are being diagnosed and starting treatment within hours, instead of weeks or months. GeneXpert machines have helped to oversee a transformation in some local health services. Owing to services’ increased capacity, health workers can collect samples, take them back to a central area for diagnosis, return to the patient and treat them at home. I actually saw that in the bush in Ethiopia. Such an approach reduces stress on the patient and on the health system, and it is much more efficient. Furthermore, battling TB worldwide has knock-on effects on TB in the UK. For example, the DFID-funded development of GeneXpert is now paying off, as the machine can now be used in UK hospitals.

Maximising the effectiveness of diagnostics requires intensive research in the field after a product has been developed, to ensure that the systems are in place to diagnose as many people as possible. In closing, I would like to ask the Minister whether DFID will commit, in future budgets, to supporting operational research programmes such as TB REACH to maximise the impact of new interventions.

[Several hon. Members]

rose—

[Mr Gary Streeter (in the Chair)]

Order. Colleagues have been very disciplined, so the last two Members to speak before we get to the winding-up speeches can be a little more relaxed. [Hon. Members: “No!”] I’m sorry.

15:11

[Mr Peter Hain (Neath) (Lab)]

Thank you, Mr Streeter—it is a delight to see you in the Chair. Like others, I congratulate the hon. Member for St Ives (Andrew George) on securing the debate and on the work that he, along with others in the room, has done with the all-party group on global tuberculosis, of which I am a member.

As I declared in the Register of Members’ Financial Interests, I visited South Africa in February 2012 with the charity Results UK, which does such important work on one of the most important questions in global health today: how do we move from struggling to control the world’s deadliest diseases to eliminating them? We can control diseases such as TB and HIV, but they continue to represent a terrible burden on individuals, families and communities across the world. In the 90 minutes of this debate, nearly 500 people will lose their lives from just those two diseases.

I am the chair of trustees of a remarkable charitable organisation called the Donald Woods Foundation, in Nelson Mandela’s impoverished homeland of the Transkei, in the Eastern Cape, in South Africa, where it is battling to control the twin epidemics of TB and HIV and to strengthen health services in remote, rural communities. It works closely with the South African Department of Health, and it has screened 150,000 people for TB. It also has nearly 10,000 people on HIV treatment, and it supports outreach to those who would otherwise not be reached. In addition, it has pioneered clinic design for infection control and TB testing.

Despite the huge and highly commendable efforts of the South African Government and of civil society organisations such as the DWF, South Africa continues to battle enormous health challenges, one of the most significant of which is drug-resistant TB. In one small sub-district last year, the DWF reported 49 cases of extensively drug-resistant tuberculosis. XDR-TB has evolved to be resistant to our best drugs, and the few treatments that remain are old, toxic and associated with terrible side effects. Treatment success with XDR-TB and multidrug-resistant TB—MDR-TB—is rare. The drugs involved, taken over years with daily injections, steadily destroy quality of life, often leaving patients with permanent disabilities. The burden of treatment is so heavy that many patients choose to default—to give up—and they discharge themselves from hospital rather than continue with what are, essentially, useless drugs that are causing them pain.

I have met people with XDR and MDR in South Africa, and their examples are tragic. I remember the story of a girl who had been confined in a hospital ward for more than two years. The drugs made her physically sick practically every day, she was losing her hearing because of them and her liver was being destroyed by the disease—TB ruined her life. Before the disease, she was doing well in school, and she had a bright career ahead of her, as well as close friends and a good family, but then the disease struck. Eventually, I am sorry to say, she discharged herself from hospital, knowing that, in doing so, she was most likely surrendering her chances of surviving. She returned to her family home, but it was empty—both her parents had died from the same disease. Soon, she also passed away—pale, sick, deaf and alone.

Sadly, that is not an isolated story. South Africa has the highest rate of TB in the world, and behind the statistics are thousands of tragic, grim stories. The worst cases are in gold mining. The deep gold mines are a source of a tremendously lethal form of TB, with all the consequences that brings.

Progress is being made against TB and HIV, but it is far too slow. The diseases continue to ravage health systems across southern Africa. Only 2% of South Africa’s TB burden is drug resistant, although that number is increasing, but that 2% accounts for fully 32% of the national budget for tackling TB.

Our weapons against these diseases are becoming less effective with every passing day, and I am struck by the similarities between drug-resistant TB and antimicrobial resistance, which was such a topic for conversation last week, with the Prime Minister launching his own special commission. We need new drugs that the TB bacteria have not already encountered, and we need a vaccine that kills or prevents infection so that resistance never gets the chance to develop. We need to remember that we have TB here in the UK and that a small but growing percentage of cases in the UK are drug resistant.

When drugs are developed, they must be affordable. Of course, commercial sector organisations must generate a profit, and developing a new drug can cost hundreds of millions of pounds and take years of sustained effort and research. None the less, while we want to find a way to unlock a new generation of drugs for diseases such as TB, we must not find ourselves in a situation where the poorest people cannot afford treatment or where the cost of buying drugs cripples local health services in poor countries.

What is required, then, is an alternative model—one that separates the requirement to generate a profit from the direction of research and that separates the cost of research from the price of the final product. Such a model, which is often described as de-linked, is the only way we will be able to encourage research and development for diseases for which there are no significant financial markets and to ensure that the products that are developed are accessibly priced. Will the Minister therefore commission a report examining the costs and implications of commercially driven development, as against de-linked development models, and use the findings to make the case to other Governments? Perhaps he could respond to that request in his reply.

We know that the system is not working; we know that the imperative to act and to find solutions to these problems is as strong as ever, and we know that the challenge of correcting market failure will dictate the future of efforts to control humankind’s deadliest infectious killers, yet we are no closer to breaking the deadlock. For the sake of the world’s poorest, our own national health service and, ultimately, our health in this country—these diseases are very infectious—I ask that DFID champion alternative, non-commercial models of development and thus help to develop the new drugs, vaccines and diagnostics that will help us to see the end of TB, HIV and malaria in our lifetimes.

15:20

[Jeremy Lefroy (Stafford) (Con)]

It is a privilege to serve under your chairmanship, Mr Streeter. I thank my hon. Friend the Member for St Ives (Andrew George) for securing this important debate.

It is extremely important for the UK, and indeed the whole world, to take seriously the question of research and development for global health. I want to outline why it is also important for it to play, as it does, a major role in the work of the Department for International Development. I believe that to be so for five reasons, the first of which is that the aims in question are global public goods. The right hon. Member for Holborn and St Pancras (Frank Dobson) talked about institutions that grew out of a desire to give treatment, including the London School of Hygiene and Tropical Medicine, which I believe was for seamen. The Seamen’s hospital was at the royal docks, and seamen from all over the world who had contracted diseases went there. The hospital that eventually became the London School of Hygiene and Tropical Medicine was set up to help them. The Liverpool School of Tropical Medicine was founded by a ship owner who saw that if he and his colleagues in Liverpool were to engage in trade around the world, there was a need for treatment for diseases that might prevent their trade from continuing. If half of a crew who had been sent overseas succumbed to deadly diseases, it would not be possible to continue to trade. Thus the school came from a compassionate interest in people’s lives, and a commercial interest linked to compassion.

Secondly, the work in question is a matter of global public goods; the diseases are not diseases of far away people in far away lands. My right hon. Friends the Member for Arundel and South Downs (Nick Herbert) and for Eddisbury (Mr O'Brien) have already said that they are the diseases of the poorest people on earth. I declare an interest as chairman of the all-party group on malaria and neglected tropical diseases. Those diseases—some 17 of them—affect well over 1 billion people a year who are among the poorest on earth. Malaria is similar, although like TB it can affect anyone. Those of us who travel to countries where it is endemic catch it, as I have on several occasions. When we invest in global research and development for global health we invest in tackling poverty and helping economic growth and prosperity. When people are sick they cannot engage in economic activity.

Thirdly, there is a need for long-term funding. That is why the role of DFID, development organisations and private foundations is so important. We are not talking about a budget for one, two, three or four years, but about long-term commitment. That is why I applaud schemes set up with the influence of, or sometimes by, the previous Government, such as the International Finance Facility for Immunisation, which I believe committed UK funds for up to 20 years, to develop vaccines. It is not possible to develop them over the short term. The Government have committed up to £500 million a year to tackling malaria. That is not just for research. As my hon. Friend the Member for South Derbyshire (Heather Wheeler) mentioned, diagnostics are key. The money will go on diagnostics research and delivery, as well as bed nets and drugs, but a substantial part of that £500 million a year will go towards research. So will part of the £40 million a year that the Government have rightly committed to tackling neglected tropical diseases.

Fourthly, there is a question of partnership and leverage. We must work with others. As so many right hon. and hon. Members have said, the task is not one that can be carried out by the commercial sector alone, although it has an important role to play; by Government alone, because Governments do not really do research; or by the foundations and NGOs alone. I have found from my work on malaria and neglected tropical diseases, as I am sure colleagues have, that it produces some of the finest examples of people working together—the commercial and private sectors, NGOs and Government —to tackle a common global problem.

The final reason I want to outline is one that was eloquently pointed out by the right hon. Member for Neath (Mr Hain), and my right hon. Friend the Member for Arundel and South Downs: resistance. We sometimes think that the problems are solved. They are not. I know far less about TB than the right hon. Gentleman and my right hon. Friend, but they pointed out the problems of increasing resistance to TB drugs. The same is being experienced with malaria, although the problem is perhaps not so advanced. Already the artemisinin combination therapies that have been a life saver for malaria around the world are facing resistance in places such as Myanmar. That is of course where resistance to chloroquine started, before it spread across Africa, resulting in the drug’s becoming almost useless. We must take the situation seriously, and I welcome DFID’s work in Myanmar to help to counter the spread of artemisinin resistance there.

Resistance develops not only against drugs, but against the insecticides with which bed nets are treated. Increasingly the mosquito is becoming resistant to some of them. That is why we must begin to use combinations of insecticides, or develop new ones. There is no doubt that insecticide-treated bed nets in the past 10 to 15 years have dramatically reduced malaria incidence and the death rate.

The debate is incredibly important because investment in research and development for global health is not an option but a necessity. I am proud that the UK takes a lead in research and in development. As the right hon. Member for Holborn and St Pancras has said, there is much of that concentrated in the UK. Also, NGOs and foundations in this country take a lead, and a huge amount of work is done by DFID. I welcome what has been done, but the problem is a long-term one and we need long-term commitment. So far we have had that from DFID, and I urge the Minister to say that the issue remains at the heart of DFID’s work and will do for years to come.

15:26

[Gavin Shuker (Luton South) (Lab/Co-op)]

I am grateful, Mr Streeter, for your chairmanship and for your maths, which has allowed a good period of time in which to express the Opposition’s support for the work of the all-party group, and for the Minister’s response.

The debate has been well informed and well attended, and there were welcome speeches by people who are hugely knowledgeable about the field. I want to refer to the disease that is predominant among those we have been discussing, and some of the recommendations in the report. I also want to consider structural and systemic issues about the delivery of effective care.

It is crucial in such debates to avoid becoming too fixated on high-level statistics and market processes, or too absorbed in the clinical mechanics of disease prevention and control. As my right hon. Friend the Member for Neath (Mr Hain) pointed out, in his hugely passionate speech, that absorption can cause us to forget the lived reality for the many people who have those terrible diseases. Death from tuberculosis, and life with it, is horrible. Cavities form in the lungs, causing bleeding, or resulting in pus-filled infection, blocking vital airways and causing difficulty in breathing. Each breath becomes a battle, because tuberculosis weakens the body and causes weight loss so extreme that, to the outsider, it can appear as if the body is literally consuming itself. When it affects children, it can mean that a child of six weighs 8 kg, which is barely the weight of a newborn baby. Long-term pulmonary damage, collapsed vertebrae, brain damage, lesions so severe that they change the structure of the body: that is the reality. Those are just some of the complications that survivors of the disease face, in addition to the stigma that besieges this disease of poverty and proximity.

As many right hon. and hon. Members have said, tuberculosis continues to ravage the lives of millions of people worldwide. There were 8.6 million new infections in 2012 alone. There are regions of the world

“teetering on the brink of a tuberculosis epidemic”.

If it is left unchecked over the next 20 years almost 1 billion people will be newly infected with TB; 200 million will develop the disease; and 35 million people will die of it. Given that it is curable, that is an unforgivable tragedy. That situation—alongside malaria, HIV, dengue, yellow fever, rabies, sleeping sickness, river blindness, leprosy and many others on the World Health Organisation’s list of neglected diseases—is a spur for our timely, if not overdue, debate.

As Members have pointed out, fundamental market failures have meant that the development of affordable and accessible treatments has simply not been prioritised in the way it should have been. In the past 40 years, just one Food and Drug Administration-approved TB drug has been introduced to market, compared with 15 FDA-approved products introduced for hay fever. Yes, hay fever is debilitating and it is certainly an uncomfortable irritation for many people, but it is not a global killer.

The inquiry and report that sparked today’s debate offer a number of pragmatic solutions that could underpin the currently failing commercial model or support the development of alternative structures and models for product development. It is crucial that these recommendations receive the attention they deserve.

The Department for International Development is already a world leader in research and development for global health, which this Government have prioritised in their parliamentary term, just as the previous Labour Government did in their last parliamentary term. It is vital that DFID’s reputation is maintained and further enhanced if the threats of pandemic proportions posed by these neglected diseases are to be abated.

The Prime Minister’s welcome recent announcement on antibiotic resistance and the £1 billion UK commitment to the Global Health Fund must also be celebrated, but such leadership must be shown across the board. A focus on research and development must not crowd out other important health care considerations. For example, the World Health Organisation’s recommended approach to tuberculosis—commonly known as directly observed treatment, short-course, or DOTS—requires daily supervision by a qualified health professional. That is an impossibility for the 2 million Somalians who have no access to health care services, or even for the 8 million Somalians who have access to such services but for whom it takes an average of four hours’ travel to reach them.

Moreover, research and development alone will not address the issue of those people who might never be diagnosed. They are prevented from accessing basic medical assistance because of poverty, stigma or discrimination. They are also isolated from the respite that decent health care can offer and, in the case of communicable diseases, they are unknowingly or helplessly infecting those around them. For these people, the urgent need for universal health care coverage is clear.

The UK death rate for TB is admittedly high in some areas. As many Members have highlighted in today’s debate, TB is a disease that shows no respect for national boundaries. Nevertheless, the reason the UK death rate for TB is low in comparison to other nations is down to the progress made by our NHS, which is undoubtedly my party’s greatest legacy. The NHS is a world-leading health care system built on the principles of fairness, providing high-quality and accessible health care that is free at the point of use.

In addition to responding to the specific recommendations of the report, I invite the Minister to set out how the UK will ensure that the laudable goal of universal health care coverage, which this Government have signed up to, will remain on the post-2015 development agenda, because it is only when we achieve universal health care coverage that the links between disease, poverty and inequality can begin to be broken.

If the main earner in a family becomes ill, the family can be driven even deeper into poverty; disease destroys their ability to earn money, or even their ability to subsist through work. That problem is compounded by the direct medical costs that patients face—such as consultation fees, drugs, diagnosis or hospitalisation—or by the indirect costs associated with ill health, such as travel to the nearest health centre, or increased nutritional or heating needs. Children miss out on school because of illness, or have to earn money to compensate family incomes that have fallen when parents or siblings become sick. So, in considering what support to give, it is essential that we not only look at the specific diseases that have been mentioned but at the mechanisms for delivering treatment.

The gendered impacts of ill health must not be ignored either. Women and girls are not only less likely to seek help, but are often saddled with caring responsibilities on top of their existing work loads. Frequently, they are even expected to give up their own work or education, undermining their chance to reach their potential, which traps the most vulnerable in cycles of poverty, disease and poverty again.

The ability to enjoy free access to health care services as envisaged by universal health care coverage would not only ensure access to treatment but would increase medical visits, which would raise the rates of diagnosis that the report makes clear are crucial in the fight against communicable diseases.

A holistic approach to health requires going beyond even universal health care coverage to include consideration of water and sanitation, inequality, housing and education, so it is clear that the challenges faced by the world in responding to the needs identified in the report are massive. However, it is only in adopting such an approach that we can be clear about the true impact of the neglected diseases that we have been discussing today, and about how we can address them.

We face some of the gravest global health care challenges of our time. Addressing them will require a co-ordinated international effort, and I am sure that the efforts of the hon. Member for St Ives (Andrew George), who I congratulate on securing this debate, will go a long way towards holding our feet to the fire and ensuring that we do address them.

15:35

[The Minister of State, Department for International Development (Mr Alan Duncan)]

I thank the hon. Member for St Ives (Andrew George) for securing this important debate—indeed, I thank all those who have contributed this afternoon. Thanks to the right hon. Member for Holborn and St Pancras (Frank Dobson), it looks as if the Chilcot inquiry will have to make a study of infected chickens.

I also thank and commend the hon. Member for St Ives, and the rest of the all-party group on global tuberculosis, for the publication of a thorough report. We all appreciate the group’s tireless work in keeping our collective focus on global health—particularly research and development, which we are discussing today. As I am sure the group will appreciate, as the report was made available to us only last night, I have not had a chance to read it in detail. However, an initial scan shows that there is much in it that we welcome.

The report seeks to answer two fundamental questions: why are diseases of the global poor so badly neglected in research efforts, and what potential solutions are available to unlock the puzzle? Following a cursory reading, I am delighted to say that the Department for International Development is widely praised for our commitment to research and development in global health, and I am also pleased to learn that our willingness to provide flexible and untied support is particularly valued. The Department will consider the report and its recommendations during the next few weeks. However, let me now say just a few words about how DFID’s approach to research and development will proceed more broadly.

In the last two decades, tremendous progress has been made in improving the health, and preventing the deaths, of those living in poverty around the world, particularly women and children. For instance, between 1990 and 2011 the mortality rate among children under five fell from 84 deaths to 53 deaths per 1,000 live births, which is a very positive and encouraging statistic. In fact, as was recently reported in The Economist, it is an astonishing result.

Africa is currently seeing some of the fastest falls in child mortality ever seen anywhere, and one of the ways in which the UK has contributed is through its outstanding research. UK Government funding and UK scientists have contributed to the development of long-lasting, insecticide-treated bed nets, which were mentioned a moment ago, and new diagnostic tests and drugs for malaria. However, the progress has not been evenly spread; more than 7 million women and children still die every year, many of them during pregnancy and birth, and the great majority from easily treatable or preventable conditions.

We need to do three things in our research for health: to develop new technologies, such as drugs, vaccines and diagnostic tests; to test them through trials; and to keep abreast of growing medical challenges such as drug resistance, which has been mentioned this afternoon. I assure the House, including all Members here today, that DFID is funding research in all those areas.

Let me highlight a few examples of what we have been doing recently. The first area of our work is about developing new technology. We know what the problem is, but we lack the technology sometimes required to fix it, so research is required to create innovative solutions. For instance, DFID support has helped the Foundation for Innovative New Diagnostics to develop GeneXpert, which my hon. Friend the Member for South Derbyshire (Heather Wheeler) mentioned earlier. GeneXpert is a new diagnostic test for tuberculosis that gives fast and accurate results. She said the results come within two hours; I might say within four hours—if we split the difference, the test is quick and that is what matters. Importantly, it also identifies drug resistance. The test is revolutionising the care and treatment of those suffering from this appalling disease.

Another example is that DFID supported the drugs for neglected diseases initiative to develop a new safer drug for sleeping sickness—one of the world’s worst diseases. The old drug, implicitly referred to by the right hon. Member for Neath (Mr Hain), was highly toxic, killing around 5% of those treated. The new drug, which is now available in 90% of the places where sleeping sickness exists, is a better drug that reaches more people.

Both those examples also demonstrate the importance of securing private sector support through product development partnerships, which hon. Members mentioned. These partnerships act like virtual pharmaceutical companies, where a small, central group of staff co- ordinates the development of new drugs and technologies, drawing on the strengths of academia and industry. The UK is a leading investor in PDPs—with the Gates Foundation, for instance—and we continue to champion their role in global health research and development.

Let me turn to some questions that I spotted being put to me in a co-ordinated way. I have to say, in all honesty, that lifting our research expenditure up to 5% of our budget is unlikely within the competing claims of a tight resource allocation round for the next three years. If one added up the many requests made to us to meet certain percentages for various causes, one would soon find that they are close to, or perhaps even beyond, 100% of our total budget. We have to be honest and should not pretend that we can meet the 10% here and the 5% there, or the nought point this or that everywhere else. We will, within the 0.7% to which we do adhere, try to apportion our budgets rationally and openly.

I hear what was said about tax credits, but hon. Members will appreciate that those are primarily a matter for the Department for Business, Innovation and Skills and the Treasury. On collective action, we agree that better co-ordination should almost invariably be welcomed and pursued.

The second area of our work concerns using research to test new ways of doing things, including through the use of clinical trials. Much of what is done in international development has not yet been properly tested by rigorous methods. The fact that many experts agree that an intervention should work does not necessarily mean that it will. Proper trials allow us to do new things, but they also allow us to call a halt to old, costly and sometimes dangerous things.

DFID helped fund research in Kenya recently on the treatment of children with severe infections, including malaria. While accepted medical wisdom suggested that one should rapidly increase fluids in children affected by these diseases, research showed that that course of treatment was actually detrimental to the health of the children and, in some cases, resulted in death.

Similarly, in Uganda, research has shown that the accepted practice of using expensive tests to monitor the progression of HIV in patients simply did not work. By stopping the tests, a third of the normal cost of treating someone with HIV can be saved, with no impact on mortality. That means that for the same amount of money, the Ugandan Government can effectively treat a third more people with HIV. That is all down to effective research. DFID is currently supporting more than 40 clinical trials under the joint global health trials initiative, in partnership with the Medical Research Council and the Wellcome Trust. We are funding new trials in TB, HIV and malaria, as well as other poverty-related neglected diseases.

There is a slight misconception that we do not fund UK research directly. We will fund the best research wherever it is located, through global, fair and open competition. However, as it happens, the largest proportion of DFID research contracts are won by UK institutions.

The Department is also breaking new ground in testing public health interventions in humanitarian crises—for example, through its partnership with the Wellcome Trust and Save the Children in the research for health in humanitarian crises project. This innovative partnership enables high quality health research to be carried out rapidly as acute emergencies unfold.

[Andrew George]

The Minister originally discounted the possibility of looking at the notional cap on research and development within DFID’s budget, but at the same time he has announced the doubling of economic development assistance to £1.8 billion. Given that we are talking about market failure, will he consider that budget as a route by which his Department can engage with the private sector, to enable further research and development that will achieve both the research and development gains and the economic development goals that his Department is seeking?

[Mr Duncan]

There is a lot that is constructive in what the hon. Gentleman has suggested. Whereas the money might not go into long-term research, there can certainly be work with private companies along the partnership lines that we already have, perhaps to extend activity in areas such as these. We are open-minded about the nature of the economic development activity that will emerge from this new approach—this refreshed emphasis—in private sector development, and I am pretty confident it does not rule out proposals such as the hon. Gentleman’s.

[Mr Hain]

Unless the Minister is to respond later to my specific request for a report, might I press him on DFID’s specifically considering the de-linking question and resourcing for it, conceivably within its budget? That is essential for delivering what we all want.

[Mr Duncan]

I do not lead on this topic, but my understanding of the Department’s approach at the moment is that we are not wholly convinced about the solution that simple de-linking would offer for the problems that the right hon. Gentleman has identified. Pharmaceutical markets are much too complicated for us to be able simply to segregate a research budget and the price at which a product is sold. The competitive structure has to be considered. Is a new drug competing with something, directly replacing something or marketing itself into a completely new field? There are many more aspects to the pricing and distribution of drugs than the simple de-linkage proposed by the right hon. Gentleman.

We do not have a closed mind on anything of this sort. The least we can say to the right hon. Gentleman is that we will get our very clever people working on it, although I do not think we will commission a great report at this stage. However, we are happy to engage with him in further detail, if he thinks that we are missing something.

[Mr Hain]

rose—

[Mr Duncan]

I sense that the right hon. Gentleman wants to chip in again. Of course I shall give way, because we have time—thanks to Mr Streeter’s mathematics.

[Mr Hain]

Will the Minister or his colleague make an assessment of and write to me with a view on how this issue, particularly the resourcing, can be approached?

[Mr Duncan]

We will, of course, write to the right hon. Gentleman, as requested, with our thoughts and views on his proposal. I have no doubt that officials will be happy to discuss with him, in person, what he thinks should be done, should he so wish it.

DFID is also utilising research and development techniques to understand better the environment in which we operate and it is working out how we can anticipate future trends. One example is in antimicrobial resistance, which has been mentioned today—a future threat on which the UK Government are taking a leadership role globally. DFID is supporting an initiative to track drug resistance to malaria in south-east Asia as it potentially spreads through the region and, critically, towards Africa. That will help target new antimalarial drugs, the development of which is also being supported by DFID.

Research alone will not alleviate poverty, which is why DFID also invests heavily into putting research into practice. Our programme, Research into Results, which is designed to convert theory into practice, is a perfect example of that. In my recent visit to Edinburgh university, I saw the good work being done in setting up small-scale businesses able to take the best research ideas coming out of universities and get them into widespread use. So many of the development challenges we face today rely on solutions from research, and solving many of the challenges we will face tomorrow will rely on the research and development investments that we make today.

[Nick Herbert]

Will my right hon. Friend give way?

[Mr Duncan]

I have only three lines of my speech left, but since it is my right hon. Friend, I will.

[Nick Herbert]

I am grateful. I welcome everything that my right hon. Friend has said, the commitment that DFID has shown to this area and his undertaking that the Department will look carefully at the report. Does he think, in the overall scheme of things, that the global response to these diseases, many of which are pandemics, is equal to the task? It has taken an enormous global effort in other respects to tackle these diseases, such as with the establishment of the global fund. Only one TB drug has been approved by the Food and Drug Administration in the past 50 years. It was developed by Janssen Pharmaceuticals, by doctors who were not authorised to take it forward because they knew it would not be commercial. Finally, the company allowed the drug. Unless there is a step change in the response in the developing world to this problem, I wonder whether we will deal with it.

[Mr Duncan]

I agree with my right hon. Friend. We had a passionate debate on TB just a few months ago, in which he spoke on a subject on which he commands the House. The scale of the activity is not yet equal to the task, and it needs to be. That is why I urge all developed countries to match the 0.7% commitment that we have made. We, having taken the lead, should be followed by others. We can be proud that we are in the lead, and if others did what we did, we might well be up to the scale of the task that he illustrated. On that purposeful note, I say that we are committed to maintaining our record of funding high quality, high impact research and to putting that knowledge into use, so that we all, in the work we do, can save many thousands, if not millions, of lives.

15:52

Sitting suspended.

UK Media (Welsh Rugby)

Tuesday 8th July 2014 Westminster Hall

16:00

[Glyn Davies (Montgomeryshire) (Con)]

I am looking forward to a debate on an intensely personal topic that I hope will inspire a great response from the Minister. On reflection, I could have asked for a short debate on the status of Wales in the world or defending the Union of the United Kingdom or “Wales, a proud nation, like England” or some similar title. Instead, I chose the UK media and Welsh rugby. I chose to take one specific example of how Wales is sometimes sidelined because she lies alongside the much larger and dominating presence of England. That is not a negative comment about England, which, like Wales, is also a great nation. In fact, my speech is more observation than criticism, even if it was born of deep frustration.

My favourite newspaper has for many years been the Telegraph, especially at the weekend. I derive great pleasure from reading Charles Moore, Boris Johnson, Geoffrey Lean and Fraser Nelson’s occasional columns.

[The Parliamentary Under-Secretary of State for Culture, Media and Sport (Mr Edward Vaizey)]

My hon. Friend describes the Telegraph as his favourite newspaper, but surely he means that it is favourite after his local newspaper, which he may want to take the opportunity to name.

[Glyn Davies]

I am always so grateful to the Minister. My local Montgomeryshire County Times & Express, the Cambrian News and various other local newspapers would probably qualify as my favourite papers, but the Telegraph is my favourite national newspaper.

Over the past month, I must also say that I have enjoyed the new columns from Isabel Hardman and others. On Sundays, I particularly enjoy the outstanding writing of Matthew d’Ancona, Janet Daley, Christopher Booker and others. Two weeks ago, however, my Sunday reading was completely ruined when I turned to the sports section to read about the two big rugby games that had been played on the previous Saturday. New Zealand had totally smashed England while Wales had come within a whisker of beating South Africa—many people’s favourite for next year’s rugby world cup—and winning in South Africa for the first time ever. In a truly magnificent performance, Wales dominated most of the match. I was able to read extensively in my newspaper about the England game with two full pages plus a good chunk of the front page. The Wales game got a few lines on page 14. I felt so let down, so disappointed, so frustrated. I know many other Welsh rugby supporters who felt just the same.

Over the last two weeks I have cooled off, and my reaction has been downgraded from seething anger to realistic observation. I accept that newspapers should be free to publish what they want—within the law of course.

[Mr Mark Williams (Ceredigion) (LD)]

I congratulate my hon. Friend on securing this important debate. What assessment has he made of how the national Welsh media dealt with our near achievements in the rugby? Mindful that the Minister is here, what about S4C, the Cambrian News, which serves my constituency as well, Wales on Sunday and the Western Mail?

[Glyn Davies]

I entirely accept that the Welsh national newspapers gave full coverage to the Welsh rugby, but I want to make a point about the promotion of Wales across the world, and I do not think that the reach of Welsh papers is anything like those that are London based.

No MP is more committed to freedom of the press than I am, and I know well that newspapers have to respond to their market. They are in the business of selling newspapers after all. At the same time, however, I also believe in the freedom of MPs to express their unhappiness about things, which is what I have just done, and I must say that I feel much better for it.

I want to approach the subject of Wales’s status in the world from three distinct angles. The biggest issue facing us is the retention of the unity of the United Kingdom. While I believe and fervently hope the Scottish people will vote to remain part of the United Kingdom when they vote in the independence referendum in September, it is worth asking what has driven so many Scottish people not to value the Union. My sense is that at the root of Scottish disenchantment with the Union is resentment towards a larger, richer, altogether more powerful neighbour in England. That is the basis of my antipathy to a federal Britain as a response to the West Lothian question. No federation can work when one member is as dominant as England would be in a federal UK. I repeat that this is not in any way a criticism of England. It is not her fault that she is big. It is not England’s fault that the majority of UK media coverage relates to England.

Over recent months, it has been great to watch our Prime Minister, other Ministers and Opposition politicians going to great lengths to tell the Scottish people that we love them and that we do not want them to leave. If the Scottish people vote not to leave, we should continue to tell them afterwards that we love them. The same resentment exists in Wales, nothing like to the same extent, but it exists. It matters that England—great nation that it is—loves Wales and makes that clear. I would hope that every part of English society, including our London-based media, would want to play a part in that.

Another crucial angle to the issue of Wales’s status in the world is how we promote Wales overseas as a place to visit and to do business. I remember when 20% of foreign inward investment into the UK came into Wales; when Wales had a close, symbiotic relationship with the great motor regions of Europe, and when the Welsh Development Agency was the best business promotion vehicle in the world. It was a time when the Welsh can-do spirit made anything seem possible. At present, the Welsh Affairs Committee is taking evidence from various bodies in order to produce a report on promoting Wales abroad, and it is already clear to me that there is a problem. The Wales division of the Institute of Directors says that UK Trade & Investment has “failed dismally” to promote Wales abroad. It is also clear that the relationship between VisitBritain and Visit Wales is poor. I was astonished to learn that VisitBritain has never met the Welsh Minister responsible for tourism. Those organisations are funded by the UK and Welsh Governments to persuade overseas visitors to come to Wales and perhaps establish businesses in Wales.

The third angle concerns the Welsh language and what I consider to be inadequate recognition of its importance here at Westminster.

[Mr Gary Streeter (in the Chair)]

Order. It may help if the hon. Gentleman refers back to the topic of UK media and Welsh rugby from time to time in his now quite wide-ranging speech.

[Glyn Davies]

Thank you, Mr Streeter, for bringing me back to Welsh rugby. There is an important link between Welsh rugby and the Welsh language. The great things about Wales that make it distinctive are, probably above all else, the language and the national game. More people play football, but rugby is linked to the Welsh language and to our culture. I hope that that satisfies your requirements, Mr Streeter.

About 20% of the population of Wales speak Welsh, but the language underpins Welsh identity and cultural distinctiveness. It seems wrong that the Welsh Affairs Committee does not encourage witnesses to speak in Welsh, and I can see no reason why the Welsh Grand Committee should not allow speeches in Welsh. Most people in the world are bilingual or even trilingual, and most Parliaments can accommodate bilingualism. Huge efforts have been made to maintain and restore yr iaith Cymraeg in Wales. Nowhere do we hear the language spoken more than at the great rugby matches that take place in Wales. Major investment in preserving and promoting Welsh continues to be made in Wales, and many Welsh people have a great love for the language and for singing the national anthem at the Millennium stadium. We should, however, create opportunities for Welsh to be used at Westminster, strengthening the link between Wales and the United Kingdom, of which Wales is a key member.

I continue to enjoy reading The Sunday Telegraph; its great writers still make it an absolute must for me to read at the weekend, despite its failure to cover Welsh rugby as I would like it to.

[Guto Bebb (Aberconwy) (Con)]

I congratulate my hon. Friend on securing the debate. I share his concern about the lack of coverage of some of the rugby matches this summer, but is that a symptom of the London media in general ignoring Wales? Is that not reflected, for example, in the fact that 52% of the people of Wales still believe that the health service is run from Westminster?

[Glyn Davies]

I moved away from the central point of the debate for a small part of my speech, but the issue is a wide-ranging one. My hon. Friend makes that point, and I chose to refer to one specific aspect of the whole issue today—how Welsh rugby was covered two weeks ago—because it makes that point as well. We can reach out across the world only if the national media—the media read outside Britain—cover Wales. That is how the name of Wales will go out into the world, and there is no better vehicle than Welsh rugby.

I look forward to reading reports of the great games that will take place at the Millennium stadium in the rugby world cup in 2015. It will be a great occasion, but I look forward in particular to the great victory of Wales over South Africa in the final.

16:11

[The Parliamentary Under-Secretary of State for Culture, Media and Sport (Mr Edward Vaizey)]

It is a great honour to appear under your chairmanship, Mr Streeter. This important debate has focused almost exclusively on the UK media’s coverage of Welsh rugby and an important subset of that—The Sunday Telegraph’s coverage of a particular match between Wales and South Africa that took place in South Africa a couple of weeks ago. I now have some 20 minutes to speak on the subject, at length.

It is important to focus on the issue. Had my hon. Friend the Member for Montgomeryshire (Glyn Davies), who gave an excellent speech, used a title such as “Wales’s place in the world”, a different Minister would be responding on Welsh issues, whether they included the record of the Labour Welsh Government—other Members present in the Chamber may wish to comment—or Westminster’s record of support for Wales in exports and inward investment. Quite rightly, however, my hon. Friend has chosen me to respond to the debate, because he knows that I have a passionate interest in specific Welsh issues, none more so than the The Sunday Telegraph match report.

May I make a brief observation before returning to the main subject of the debate? It is good to see my hon. Friends the Members for Ceredigion (Mr Williams), for Aberconwy (Guto Bebb) and for Carmarthen West and South Pembrokeshire (Simon Hart) in the Chamber. It will not have escaped their notice that not a single Labour MP is present. We have Prime Minister’s questions tomorrow and Tuesday is a busy day in the House; their absence cannot be explained. They may say that I am talking about them behind their backs, but I would be talking to them had a single one of them bothered to turn up to show their interest in Welsh issues. Far be it from me to say that some Labour MPs might take their support in Wales for granted, but in my experience over the past four years, in particular dealing with S4C, colleagues in the Conservative party have been active campaigners on aspects of Welsh media.

[Guto Bebb]

The Minister rightly alludes to the battles fought over the S4C budget. That is directly related to the fact that, for 30 years, S4C has been very innovative in its coverage of Welsh rugby, including in how it has extended the hand of friendship over the border into England by allowing people to choose their preferred language via the red button.

[Mr Vaizey]

That is true. One of the aspects that emerged during our many debates about S4C was indeed its coverage of Welsh rugby. S4C is very much part of the UK media, as I will go on to explain. It may be, should time allow, that other Members might want to comment further on S4C’s excellent coverage of Welsh rugby.

Some might ask what the problem is. Do we need better coverage of Welsh rugby? Welsh rugby stands as a legend for all people who follow international rugby. Here am I, an Englishman from the south-east, but the names of Edwards, John, Bennett, Quinnell and a man who can be recognised by just three letters, JPR, are part of my childhood and growing up, and they still define our understanding of the modern game.

In more recent years, the Millennium stadium—on the site of another legend, the Arms Park—has been one of the most iconic rugby stadiums in the world, it is so well known. It is absolutely right and proper that it will host eight world cup fixtures next year, including two of Wales’s home games. That is a great illustration of the sport and its Welsh tradition throughout the globe.

The influence of Wales in rugby extends to the women’s rugby world cup in France. My hon. Friend is no doubt aware that the Prime Minister himself last week sent a message of good luck—interestingly, my own Secretary of State said last week that politicians wishing good luck could have the opposite effect, but he has also wished the Welsh women’s rugby world cup team good luck. Jokes aside, that shows the esteem in which the powerful Welsh women’s team is held. They have a chance to grab the headlines and do their great rugby- loving nation proud. I hope that the Telegraph gives their games the coverage that they deserve.

Frankly, it is not only in rugby that Wales has great achievements to its credit, and I hope that those other sporting achievements will also be recorded by the UK media. Who can forget that a Welsh football player commanded the highest transfer price on record? Gareth Bale is worth more than a Neymar or a Robben.

The importance of sport in our national identity and in keeping our nations together should not be underestimated. I happen to think that it is a great thing that Cardiff and Swansea have played in the premier league—Swansea is still in—because, were I to be indiscreet, it occurs to me that perhaps the majority of the population is more interested in and passionate about sport than politics. One of the things that will keep our country united is a shared passion for sport and the opportunity for all our nations to participate together in great sporting occasions.

I have mentioned rugby and football, but the great Commonwealth games are starting imminently in Glasgow. Again, I hesitate to place a jinx on them, but I wish good luck to Dai Greene in the 400-metre hurdles, Jazz Carlin in the swimming, Geraint Thomas in the cycling and the rugby sevens team. We look to the Telegraph to give suitable coverage to what will no doubt be great achievements in the games.

[Simon Hart (Carmarthen West and South Pembrokeshire) (Con)]

Will my hon. Friend give way?

[Mr Vaizey]

I would be more than delighted to give way to my hon. Friend.

[Simon Hart]

I rather thought you might be.

The Minister has been mentioning a lot of the major sports, but will he spare a thought for those taking part in the Ironman competition in Tenby in the coming months—1,800 of them, I think? It is a global event, which is staged in only two places in the UK, one of which is Bolton and the other Tenby. It is a fantastic sporting event, which gets minimal TV coverage, but if anyone wants an indication of athleticism at its best, Ironman Tenby in September is the place to be.

[Mr Vaizey]

My hon. Friend makes a good point. Ironman Tenby is a legendary sporting event. History does not relate whether my hon. Friend is intending to take part—in terms of engagement with his voters, it would be a sensible thing for him to do. Perhaps in this Chamber today we could start the campaign for him to take part in that event, because he has three months left for training. I take his point and call on the Telegraph to give Ironman Tenby suitable coverage. It is an important event for the nation as well as for Wales.

We are discussing the UK media’s coverage of Welsh rugby; it is important to talk about the UK media as a whole, not just about the Telegraph. Our television and radio broadcasting are underpinned by frameworks designed to ensure that both regional and national content reach a wide audience, be that in coverage of sporting events, news coverage or in the production of drama and entertainment programmes.

We should note that the BBC should also provide suitable coverage for Welsh international matches. I have not done any research on that, and my hon. Friend the Member for Montgomeryshire did not mention it in his speech, so I am not aware of whether it is a particular problem, but I hope that those listening to the debate take note that there should be suitable coverage.

The licensing regime for the public sector broadcasters supports investment in the UK regions and nations, something from which everybody benefits. The levers that both we and Ofcom have are kept under constant review. For example, in terms of UK media coverage of Welsh rugby, Channel 4 has a quota for production of content outside England. That is going to increase from 2020 from 3% to 9%, which should be good news for Welsh content. The BBC has made an ongoing commitment since 2008 to grow its regional production, with 17% of network spend coming from the nations by 2016, which again should be good news for Wales and Welsh rugby.

The separation of the new ITV Wales from the current ITV Wales and West regional franchise will also give artistic freedom for that Welsh broadcaster to invest in high quality Welsh public service programming—I hope that includes suitable coverage of Welsh rugby matters. I know that Members from both sides of the House have strongly welcomed that important development.

Welsh broadcasting has had a lot to celebrate in recent years. Only last year we saw the 30th anniversary of S4C, an organisation that the current Government continue to fund, with the BBC, to the total tune of more than £80 million a year. We have already referred to S4C’s excellent coverage of Welsh rugby.

[Guto Bebb]

I would not like to be accused of correcting the Minister, but it is important to state that the cash funding for S4C is to the tune of £80 million, although the BBC also provides £19.6 million in funding in kind. The total funding for S4C is in the region of £100 million.

[Mr Vaizey]

I would like to say that I stand corrected, but I rather feel that I stand elaborated. Clearly, I was referring to the £82.6 million cash funding. My hon. Friend has elaborated on the funding in kind through provision in content from the BBC.

Although our subject is Welsh rugby, I hope you will indulge me, Mr Streeter, if I mention S4C’s fantastic coverage of the Eisteddfod and Royal Welsh Show, as well as its famous soap opera, “Pobol y Cwm”. I have taken part in many debates on S4C and have been challenged by hon. Members about my interaction with content from the channel, so I am genuinely delighted that the superb drama “Hinterland” has made a real impact on English audiences as well as Welsh ones. It has shown that the Welsh can play the Scandi game and produce great drama that can be sold around the world, regardless of its language of broadcast.

[Mr Mark Williams]

I am sure my hon. Friend would like to acknowledge that “Hinterland” was filmed in my constituency of Ceredigion, and so serves a double purpose as it promotes Ceredigion as a tourist centre for our friends across the world.

[Mr Vaizey]

Anyone who has seen “Hinterland” will have been incredibly impressed by the quality not just of the drama but of the filming of those incredible landscapes, which must now serve as a wonderful calling card for Welsh tourism and tourism in Ceredigion in particular.

As is the case for many cultural institutions, S4C’s successes have been delivered alongside significant challenges. I was therefore delighted that we protected S4C’s funding in the last autumn statement. Our commitments on regional and national programming are also enhanced by the new local TV services, which so far have been licensed in Cardiff and Swansea, with services for Mold and Cardiff due to come on air shortly.

In talking about the UK media’s coverage of Welsh rugby, it is also important to point out that the Government’s broadband programme will provide another potential avenue of access to content. We have provided about £100 million, I think—that figure is off the top of my head—to the Welsh Government to carry out a broadband programme. Something like half a million homes will be connected under that rural broadband programme, getting figures for Wales up to 90% and beyond. It is going extremely well and we have covered more than 160,000 premises so far. People can get television content on broadband and now that new competitors are in play—not just Sky, but BT Sport—one may well see enhanced coverage not just of Welsh international rugby but Welsh domestic rugby. Much of that will be down to the fact that infrastructure coverage is going so well in Wales.

We are going through a golden age of investment in sports coverage. In 2012, more than £2 billion was invested by all broadcasters in sports programming and sport became the most watched genre on TV. That is why my hon. Friend the Member for Montgomeryshire was so right to bring up the UK media’s coverage of Welsh rugby as a way of bringing to the attention of the House the broadcasting opportunities that now exist for Welsh sport and Welsh rugby in particular. [Interruption.] Given the leaning position that my hon. Friend has taken, I cannot tell whether he is fascinated by my remarks or about to make an intervention, but I will keep a weather eye on him in case he wishes to intervene at any point.

[Glyn Davies]

Will the Minister give way?

[Mr Vaizey]

Of course.

[Glyn Davies]

I had not intended to intervene, but I feel tempted to do so. Does the Minister agree that sport is probably the most effective way to take the name of Wales to the wider world, through the stars whom he has mentioned? One issue we have is promoting Wales across the world as an identifiable country that is not a part of England. Does he agree that sport is the best and most effective way to do that?

[Mr Vaizey]

I absolutely do. Let me elaborate. I was lucky enough to watch the end of the Tour de France yesterday—it was only up the road—and somebody turned to me and said, “That is soft power at work. That is the French making a bigger impact on the UK psyche. What is our equivalent?” I said that to a certain extent it was probably the premier league. We should think about the reach of the premier league and the opportunities that Swansea and Cardiff have to promote Wales when they are in the premier league.

The Welsh rugby team, of course, has an impact in South Africa, Australia and all around the world. We should also think of the stars of Welsh rugby and football, as I mentioned earlier. Gareth Bale will do a huge amount to promote Wales, as a passionate Welshman himself. Ryan Giggs was part of a squad that was probably one of the most successful football teams in the world. Their utter loyalty to Wales is impressive—they could perhaps have played around with their genealogy to get to play for other teams but they were loyal to Wales, a great international football team.

Sport is incredibly significant, which is why it is so important that my hon. Friend has brought to the Chamber’s attention the coverage that our own domestic media give to Welsh rugby and other great Welsh sporting achievements. Another point to raise—although it might perhaps be a bit late in the day to mention it—is that almost more important than the players themselves are the fans. The passion of the Welsh rugby fan is known all across the world, and it is Welsh rugby fans who are devouring more and more sports media content through the internet, including sites such as “The Bleacher Report”. I have mentioned BT Sport and Sky. Wales’s recent rugby tour to South Africa was covered on Sky Sports and the BBC’s online rugby service “Scrum V” enables viewers living outside Wales to watch live games on satellite and cable and via the internet.

I have more to say on this subject, but I see that time is running out so I must bring my remarks to a conclusion. I am grateful to my hon. Friend for bringing this matter to our attention. I note that Conservative and Liberal Democrat MPs have turned up in force to debate an issue that is important to Wales, to emphasise the importance of Wales’s place in our United Kingdom and to remind us all that, whether in rugby, at the Commonwealth games, in football or in cycling, Welsh sporting achievements deserve the full attention of the whole of this United Kingdom.

Learning Disabilities (Care in the Community)

Tuesday 8th July 2014 Westminster Hall

16:30

[Mr Tom Clarke (Coatbridge, Chryston and Bellshill) (Lab)]

It is a pleasure, Mr Streeter, to serve under your chairmanship, and I am grateful to have been granted this debate. There are 1.4 million people with a learning disability in the UK and many require care and support to live full lives in their communities. Many do so, supported by families, friends, charities and funded social care. However, a small but significant number—just over 3,000—are far from their homes and communities, stuck in assessment and treatment units. They are some of the most vulnerable people in our society. Many display challenging behaviour and require skilled support from a range of professionals, but that is no reason why they should not be cared for and supported in their community.

In 2011, the BBC’s “Panorama” programme exposed truly horrific abuse and neglect of patients with learning disabilities at the Winterbourne View assessment and treatment unit. Many hon. Members will remember the deeply distressing images of people being hit, verbally abused, viciously restrained and thrown into seclusion. Some of the perpetrators were rightly sent to prison, but Winterbourne shone a light on the wider scandal of how the NHS and local authorities throughout the country have failed to give people the right support to enable them to live in the community. They had hidden that failure by sending people with learning disabilities to in-patient settings, in many cases for years and often hundreds of miles from their families and communities, isolated and alone. That was against Government policy and was a scandalous misuse of what assessment and treatment beds should be used for. It was estimated that the cost was around £500 million.

[Kate Green (Stretford and Urmston) (Lab)]

I am glad that my right hon. Friend is raising this important matter this afternoon. Does he agree that the situation, far from improving, may be worsened as a result of the closure of the independent living fund if it means that more learning-disabled people who are currently able to live independently are forced into residential care?

[Mr Clarke]

My hon. Friend makes a valid point and was right to do so.

Some £500 million of public money was spent to pay for people to be over-medicated with anti-psychotic drugs and kept in seclusion at risk of assault and self-harm. In December 2012, the Government put in place an action plan with the objective of giving people with learning disabilities support to enable them to move out of places like Winterbourne View and to return to their communities. A joint improvement programme was also put in place, and the NHS and local authorities were given a deadline of 1 June this year to make that happen.

The result is nothing short of a scandal. Not only has the deadline been missed, figures from the NHS show that more people are going into those units than coming out. Not only that, there seems little appetite to move people. Recent NHS data showed 90% had no discharge date. Meanwhile the human suffering continues. The learning disability census showed that 57% had experienced self-harm, an accident, physical assault, hands-on restraint or had been kept in seclusion.

[Mr Andrew Smith (Oxford East) (Lab)]

I, too, congratulate my right hon. Friend on this enormously important debate. Last Friday saw the first anniversary of the preventable death of Connor Sparrowhawk in the Slade unit in my constituency. One year later, we have not had the inquest or the serious case review, and his family are scrambling around to raise money so that they will be legally represented at the inquest where the public authorities will be represented at taxpayer’s expense. Does my right hon. Friend agree that more needs to be done to prevent such tragedies and, when they occur, to help the families and victims to see justice?

[Mr Clarke]

I agree entirely with my right hon. Friend. It was important that he put that case on the record.

The picture we are seeing is clearly unacceptable. Mencap, the Challenging Behaviour Foundation and Enable in Scotland have campaigned vigorously with the families of those affected, and I thank them for their advice for this debate. Many of the families have experienced the sheer pain of knowing their son, daughter, brother or sister has suffered horrific abuse and in some cases died. They have battled in many cases for years to get their loved ones out of these dreadful places, but have been blocked by an uncaring system that is often more focused on money than high-quality care and the rights and dignity of people with learning disabilities.

To mark the passing of the 1 June deadline, the families came together to write an open letter to the Prime Minister asking him to take urgent action and to meet them. I understand from them that to date there has been no reply. That is unacceptable and I hope the Prime Minister will look again at their letter and take the opportunity to meet them.

I had the privilege of meeting many of the families some time ago prior to my Adjournment debate back in autumn 2012, and more recently at last week’s all-party group on learning disability which I chair with Lord Rix, who has of course campaigned vigorously in this area. In common with all my colleagues, I cannot praise Brian more highly. I pay tribute to the families’ determination in fighting to change things for the better, not only for their loved ones, but on behalf of the thousands of others trapped far away in these places.

I turn to the case of Josh. The Wills family have campaigned for their son, and #BringJoshHome has caught the public interest, which we welcome. Phil Wills, his dad, spoke at the all-party group meeting last week and I know how moved everyone in the room was. Phil and Sarah’s son, Josh, lived in his family home in Cornwall with his siblings until July 2012 when his self-injurious behaviour increased. As a result, he was sent to a unit 260 miles away. Phil and Sarah reluctantly agreed to that because they were told there were no local services and it would be for a six-month assessment period to give everyone an understanding of the support and services Josh needed.

Almost two years later, Josh is still in Birmingham, a five-hour trip for his family. The Kernow clinical commissioning group continues to procrastinate and refuses to commission the services needed locally. Meanwhile, away from his family, Josh grows more anxious and his parents fear for his life because of the severity of his behaviour. He spent both his 12th and 13th birthdays there and has never met his newly born little sister.

I am very grateful to the Minister for his address to the all-party group meeting last week. I understand that he has met Phil and Sarah on more than one occasion and, to his great credit, many of the other families. I know he shares my deep concern over what has happened, and indeed, what has not happened. At the meeting, he shared his feelings about the lack of progress and the work he has been doing with NHS England, which has powers to intervene and address local failings. I say to him today that his views were very much appreciated.

I also welcome to the debate the shadow Minister, my hon. Friend the Member for Leicester West (Liz Kendall), and I welcome the contributions of my hon. Friend the Member for Stretford and Urmston (Kate Green) and my right hon. Friend the Member for Oxford East (Mr Smith). I look forward to what the Minister has to say, and in particular, I would like him to answer the fundamental questions that every family affected wants an answer to. Given that the June deadline has passed, what are he and other Ministers now doing, and what will the new deadline be? Where will the leadership come from across health and local government to ensure that we make progress?

It would be beneficial if the Minister could clarify the status of the joint improvement programme originally tasked with getting people back within their communities. Patently, that has failed and it has been dealt a further blow with the resignation of its director only yesterday. Are we to see a second joint improvement programme? Who will it consist of? How will it be successful? Critical to the solution, in my view, is also how we refocus money away from these high-risk units and into good-quality, locally based provision. If he could comment on that as well, I would be extremely grateful.

With regard to Scotland, it should be said that despite the Barnett formula, which means that 10% of the money spent in England is allocated to the Scottish Government, the widespread concern that is here in England also applies in Scotland. It is not helpful that Scottish data on these matters are poor, and that the £34 million allocated on the basis of the Barnett formula—arising from the committee that I chaired on disabled children and their families—was not spent on that purpose, but was used to keep council tax static. Scottish decisions on such placements can mean that placements out of area can also lead to placements out of Scotland. In one case, a man was sent to Carstairs, an NHS hospital for the criminally insane. He was later dispatched to Newcastle, where his elderly father finds the greatest difficulty in visiting him.

According to John White, the positive behaviour support adviser of Enable Scotland:

“The issue with assessment and treatment units can be that such environments can become the ‘setting conditions’ for people developing the challenging behaviours they are meant to be assessing and treating in the first place. We know from experience that people who had to live in NHS institutions for many years developed challenging behavioural repertoires in response to the experience of living in such environments and so it is logical that similar environments with similar institutional features are likely to encourage the development and maintenance of similar challenging repertoires.”

I would add that, important as it is, positive behaviour support is not a panacea and should be available as a part of a multi-agency health and social care collaborative approach. We need services to be designed around people, who along with their families, should have as much choice and control as possible. We need strong local crisis supports, staffed collaboratively by the NHS and local providers working in partnership, preventing hospital admission in the first place for all but those few people with a significant mental health problem that requires treatment.

For many years, we have been talking about care in the community, and there have been great strides. But the 3,250 people we are talking about today have been failed, let down by poor-quality or non-existent local services and then placed in high risk in-patient settings, where we have seen abuse, and tragically, loss of life. This is a national disgrace, and one that I hope right hon. and hon. Members from both sides will agree must be addressed decisively now.

I look forward to the Minister’s reply. I thank him for his presence, and I know he will share my view that these issues are crucial to the services that we provide, particularly in social services, remembering the rights of every individual citizen of this country.

16:45

[The Minister of State, Department of Health (Norman Lamb)]

I congratulate the right hon. Member for Coatbridge, Chryston and Bellshill (Mr Clarke) on securing the debate and thank him for doing so. I do not think I disagree with a single word he said in his speech today. The right hon. Member for Oxford East (Mr Smith) also talked about the scandalous case of Connor Sparrowhawk. I have met his mother and what happened there should shock us all. There was acknowledged negligence in the care and these things simply cannot go by without a proper and effective response to stop repeats of this sort of thing ever happening again.

One thing that the right hon. Member for Coatbridge, Chryston and Bellshill focused on was the families, to whom I pay enormous tribute for their campaigning. What is most shocking when one talks to them is the sense that they are not listened to—that they raise their concerns with public bodies and get no effective response. They are ignored and that should shock us all.

The right hon. Gentleman also said that it is an ongoing scandal and a scandalous misuse of public money, and I completely agree with him. This has now gone on for very many years. It is an unacceptable remnant of the previous system of institutional care that has to come to an end. The thing that has depressed me in this job, more than any other aspect of it, is the extent to which it is so difficult to change the culture that allows this sort of thing to carry on. There is the sense that those commissioning care seem, it appears, to be willing to carry on with business as usual, when we know that the outcomes for those individuals are not acceptable, and that very many of these individuals are able to live a better life in supported living in their communities. The imperative to achieve change is as strong as ever, and for as long as I am in this job, I will do everything I can to try to change things.

Because of my total frustration about the way in which commissioning has happened, I chose to go out to visit one 17-year-old girl a couple of weeks ago in an assessment and treatment centre to see it for myself, and to see the barriers that that family are up against and the problems that they have had engaging with the commissioners of care, which, in that case, is NHS England. Indeed, with regard to the case of Josh that the right hon. Gentleman mentioned, I have invited the clinical commissioning group to come into my office on, I think, 22 July, together with NHS England and with the family, so that we can get to the bottom of what has gone wrong and try to achieve a solution. I am prepared to intervene in this way if necessary, to force change to a situation that I regard as completely unacceptable.

I am very pleased to have the opportunity to focus on the needs of people who, as the right hon. Gentleman said, are among the most vulnerable in our society. Many of us share the concern that people with learning disabilities and their families are still getting an unacceptable raw deal from the health and care system, from other public services, and from society in general. People with learning disabilities have exactly the same rights as anyone else, yet they continue to experience discrimination, abuse and a basic lack of respect for their fundamental rights. That should shock us all.

[Margot James (Stourbridge) (Con)]

I am most encouraged by my hon. Friend’s remarks, and I congratulate the right hon. Member for Coatbridge, Chryston and Bellshill (Mr Clarke) on securing this important debate. Has my hon. Friend come across the organisation based just outside my constituency, Changing Our Lives? It was founded by Jayne Leeson, who was awarded the MBE for her services in this area. It is doing such innovative work that demonstrates clearly the potential of people currently in residential care with learning disabilities, who can live a most fulfilling life outside, in the community, through supported living.

[Norman Lamb]

I am very grateful to my hon. Friend for that intervention. I would be interested to hear further information about the organisation to which she refers. It is clear that sometimes a leap of faith is required to give a person the chance of a better life outside, and the system is horribly risk averse. We know that the main cause of decisions to keep people in assessment and treatment centres is the clinical judgment that the person needs to stay there, so that needs to be challenged. I want to give people the right to a second opinion and I am in discussions with Simon Stevens, the chief executive of NHS England, to give people that right, because we have to find ways of giving a voice to people who hitherto have felt that they are ignored and not listened to and that nothing ever changes.

I pay tribute to the two organisations mentioned by the right hon. Member for Coatbridge, Chryston and Bellshill: Mencap and the Challenging Behaviour Foundation, which have continued to make the case on behalf of people with learning disabilities.

Winterbourne View and the appalling abuse of people there reminded us that there is still a massively long way to go to ensure that people are safe and get the right support—the support that they need. The Government’s review following the Winterbourne View case looked at the systemic issues facing people with learning disabilities and their families. At the end of the review, we published the concordat—the right hon. Gentleman referred to that—bringing together all the national organisations to commit to change. In a way, the most distressing thing is that I felt that organisations committing to the concordat and the change set out in it were doing that with a seriousness of intent that they would deliver on. The lack of change that there has been since then is really shocking, given that they committed to achieving that change. Eighteen months on, we all need to remind ourselves that progress so far has not been nearly good enough and that we all need to continue to work in partnership to deliver on the commitments solemnly made at the start of all this.

I have said recently, and the information that we have shows, that far too many people with learning disabilities are still stuck in hospitals, often hundreds of miles from home and in many cases for years, with serious questions about whether they are getting the right care and support.

I have also met Mike Richards, the chief inspector of hospitals, and Paul Lelliott, the deputy chief inspector for mental health, to ensure that the Care Quality Commission challenges organisations. If someone is living in an assessment and treatment centre, which is there for assessment and treatment, not for long-term living, surely it is not delivering the right model of care. That needs to be challenged by the Care Quality Commission and not simply accepted and tolerated.

Collectively, we need to be honest and say that the system has so far completely failed to deliver on the commitment made in the concordat significantly to reduce the number of people with learning disabilities who are in effect living in hospitals—for whom hospital is their home.

[Jim Shannon (Strangford) (DUP)]

Will the Minister give way?

[Norman Lamb]

I will very quickly; I am conscious of the time.

[Jim Shannon]

I want to say just one thing. Is the Minister saying that this Government are committed to partnership relationships with housing groups and those who are committed to facilitating supported living for people outside these homes? I think that, if he is, he will find that many outside bodies are prepared to take him up on that.

[Norman Lamb]

I very much agree and I am grateful to the hon. Gentleman for that intervention. Providers of supported living care need to be much more central to the task of changing this culture. Indeed, I have asked for a meeting to be arranged that will bring in some of those providers, with Simon Stevens and the chief nursing officer, Jane Cummings, who I am pleased is now in charge of this programme, to demonstrate how they can play a part in effecting change.

I also want to acknowledge the work that has been done from the concordat and what has been achieved by NHS England and other delivery partners.

It is appropriate for us to start by looking at the people who were in Winterbourne View before it closed. I am pleased to report that NHS England’s Improving Lives team, who include senior clinicians, social care staff, third sector partners and family members of people with learning disabilities, have now reviewed the care of all but one of the 47 people who were in Winterbourne View, and the care of the one remaining individual will be reviewed by the end of this week. Those reviews have resulted in some people moving out of hospital into circumstances that are more appropriate for them as individuals.

The Government have provided funding so that the people who were in Winterbourne View can have additional trauma assessments where the need has been identified and they have consented to those assessments. We are providing additional funding to support families through a telephone helpline, regular telephone counselling and family support days. The funding will also support other people with learning disabilities—including the 17-year-old girl whom I visited a fortnight ago—who have experienced institutional abuse, and help their families.

Involving people with learning disabilities and their families is key to ensuring that the work that we are doing means that they have a better experience and better outcomes. We have provided funding to organisations to allow people with learning disabilities and their families to share their views with us, so that we can listen to them and respond to the concerns that they raise.

We have also made progress on other Winterbourne View concordat commitments. For example, guidance has been developed on commissioning advocacy for people with learning disabilities so that, again, they get a voice and they get access to information, advice and support when necessary. It is vital that local commissioners ensure that people have proper access to high-quality advocacy where they need it.

[Mr Tom Clarke]

I am very grateful for the Minister’s tone and I know that he feels deeply bound to respond to the problems that we are discussing. I welcome the fact that he mentions advocacy. Will he assure us that his Department will do everything possible to insist that advocacy remains at the heart of all our discussions?

[Norman Lamb]

I very much will do that. I have specifically talked to Simon Stevens about that. I am conscious that time is tight, so let me just mention one or two specific things. First, there is now movement on people getting plans for leaving institutional care. NHS England expects that clinical commissioning groups and its area teams will discharge or transfer 35% or 892 of the 2,615 people currently in in-patient settings within the next 12 months. That is 385 within three months, 266 within six months and 241 within 12 months. That is what they have come up with in terms of going through individual plans. We now have to ensure that it happens, and there is no guarantee in my mind that it will happen, so we have to hold the system to account.

I have mentioned that we have to unlock barriers wherever they exist. For me, one of the barriers is this. When someone transfers from the responsibility of NHS England to the local authority, the responsibility for the funding transfers to the local authority. That creates a disincentive for the local authority to take responsibility for that person, so the money has to flow with the individual. We have to ease the transition and not make money a barrier to an appropriate transfer to supported living in the community.

I have also mentioned that we have to address the question of the clinical judgments. That is not to say that in individual cases a clinician will not be making their best judgment about an individual’s need to stay in a particular setting, but surely the family need access to a second opinion to be able to challenge that judgment. I am conscious—I say no more than this—that the clinicians who are making the judgment are often employed by the organisation that is receiving payment for providing the bed to the individual. Whether it is in the state sector, the independent sector or the voluntary sector does not matter. The right to a second opinion is essential.

In the moments left to me, let me say that I remain totally committed to getting the culture change that we are all after. What has happened so far is not acceptable.

16:59

Sitting adjourned without Question put (Standing Order No. 10(13)).