Contaminated Blood

Mark Durkan Excerpts

Tuesday 25th April 2017 Commons Chamber

[Sir Peter Bottomley]

The right hon. Gentleman has taken the words out of my mouth, and has said it better than I could have. We are all grateful to him. The point is that this scandal should never have happened, when it was started it should have been stopped, and when it had been stopped people should have known why it had gone on for as long as it did. The right hon. Gentleman has done a service.

[Mark Durkan (Foyle) (SDLP)]

The House should not forget that there was a tribunal of inquiry in Ireland. The Lindsay inquiry found that the state knew of the risks and continued nevertheless, because that was what other states such as the UK were doing. So is it credible that an inquiry in Ireland could find that the risks were known but the practice carried on anyway, and that a further investigation through a panel such as that mentioned by the right hon. Member for Leigh (Andy Burnham) would not come to that same conclusion?

[Sir Peter Bottomley]

That is one of the questions to be asked.

I conclude by thanking the right hon. Member for Leigh and the hon. Member for Kingston upon Hull North (Diana Johnson) who leads the all-party group on haemophilia and contaminated blood, and my right hon. Friend the Member for North East Bedfordshire (Alistair Burt), sitting in front of me, who has done so much, both as a Back Bencher and a Minister, to make sure that these issues are dealt with.

Agenda for Change: NHS Pay Restraint

Mark Durkan Excerpts

Monday 30th January 2017 Westminster Hall

[Mark Durkan (Foyle) (SDLP)]

It is a pleasure to serve under your chairmanship, Mr Evans. It is a particular pleasure to follow the excellent contribution from the hon. Member for Newcastle upon Tyne North (Catherine McKinnell). She set out the compelling case for why the pay regime for nurses, midwives and associated health service professionals across our health services is becoming increasingly exploitative.

The hon. Lady spoke of the particular experience in England; I obviously speak from the experience of Northern Ireland. Unfortunately, the Administration in Northern Ireland have chosen to void the clear recommendations from an independent pay review body, as in England, and have not taken the more constructive approach followed in Scotland to pay recommendations and to meeting the proper pay needs and aspirations of hardworking professional staff. As other hon. Members have said, those staff provide such a valuable service day in, day out. They work long hours with huge responsibilities, but with less and less of a sense of reward and with ever more inadequate remuneration.

We now have the situation in which many things have been brought forward. People were promised that Agenda for Change would ensure greater equity and transparency on pay, that they would see salary paths improving naturally—with more than just token increments—and that it would reward people’s sense of vocation. Of course, it does nothing of the sort, because people have found themselves locked into highly contested bands. Certainly in Northern Ireland, people doing the exact same work in different trusts are paid differently, which is causing huge frustration and a grave sense of grievance and injustice for many people.

The health and social care system in Northern Ireland is supposed to be operating increasingly as a single employer, with the commissioning role of Health and Social Care Board moving to the Department and the Minister. However, we have the bizarre situation in which people who are doing the same job and delivering on the same targets set by Ministers and the Executive are supposedly employed by different trusts and are paid differently—not because their working terms are different, but because the terminology on their contracts might be different here or there. The slightest difference in terminology in job descriptions is being used to keep people in lower pay bands than their counterparts in a neighbouring trust who are doing the exact same job. Of course, not being able to address those issues absolutely suffocates people with frustration.

This has happened in the context of those staff being locked into the 1% pay rise cap that has endured for a number of years. It is one thing to ask people to take a pay freeze in the name of austerity and managing public financial pressures for a year or two, but it is another to be locked into such a pay freeze while seeing other people, including on the public sector payroll, being able to escape those constraints. Again, it adds to the sense of injustice.

[Mr Jim Cunningham (Coventry South) (Lab)]

On the pay freeze, over the past five or six years it has worked out to roughly the equivalent of between a 6% and 8% wage cut. That is the reality that those people face. The Government say they value people in the health service, but the only way to demonstrate that is through their wage packets at the end of the day. The other issue, which will certainly affect mature students who want to be either a nurse or a midwife, is that the education maintenance grant has also been cut. So much for valuing people who work in the national health service.

[Mark Durkan]

I agree with all of the hon. Gentleman’s points; they touch on points made in interventions by other hon. Members. Let us be clear: the long-standing freeze is, in essence, a long-term pay cut in real terms. People are left feeling frustrated and aggrieved by that. People are leaving the profession; they feel they are being driven out—we heard references to the number of people who are switching to agency roles, but many people do not want to do that, and their sense of vocation is being exploited in a way that now probably more than borders on the cynical. A better response is needed.

I have made points particularly on Northern Ireland. On Agenda for Change, we know, as other hon. Members have mentioned, that pay in the lower bands actually falls below living wage standards. One appalling vista—which will bite this year in Northern Ireland, where these adjustments are being made—is that the money for that 1% pay rise will be used to bring people in the lower wage bands up to the living wage. In other words, if the 1% envelope is to be used to cover that, other people will lose out; there will be a trade-off between nurses and health service professionals in different grades, with that 1% being prioritised towards bringing people up to the living wage. Nobody should be asked to endure inadequacy as the price of affording a micro-concession to equality for those who are locked into the lower bands that pay below the living wage. That is going to bite in Northern Ireland this year.

It should not, because as part of the Stormont House agreement and other things, Northern Ireland has a voluntary exit scheme that was meant to reduce the cost of the public service payroll. If that overall voluntary exit scheme saves money on the public service payroll, my party made the point that, rather than those savings being used to pay for a cut in corporation tax in future years, they should be used for restorative pay measures—starting first in the national health service for those staff who have suffered as a result of freezes and who are stuck on inadequate and unfair pay bands under Agenda for Change. Their case could be met because public sector payroll savings are on the way.

Health service staff in Northern Ireland will be asked to manage yet more change. People already work long hours in heavy-demand services, but more structural changes will be made to health services following the Bengoa review and others. If people are being asked to manage all of those changes and keep those services going during those transitions, the one thing they are entitled to is some long overdue consideration of the inadequate pay they have been asked to endure.

[Mr Nigel Evans (in the Chair)]

I call Dr Philippa Whitford.

--- Later in debate ---

[Mr Dunne]

Once again, the hon. Lady is speculating about what might happen in future, and I am afraid that not only can I not comment on that, but I am not sure whether she is correct or not. There are some assumptions in what she said about what will happen to the national living wage. The Government are making some assumptions, but what the Government choose to do about the matter we will have to see. At present, the policy is certainly that nobody will be paid less than the national living wage. I can reassure her about that.

[Mark Durkan]

Just to clarify, like the hon. Member for Central Ayrshire (Dr Whitford), I was referring to the living wage and not to the national living wage, which is a figment of Government policy.

[Dr Whitford]

rose—

Accelerated Access Review

Mark Durkan Excerpts

Tuesday 13th December 2016 Westminster Hall

[Mrs Sharon Hodgson (Washington and Sunderland West) (Lab)]

It is an honour to serve under your chairmanship, Sir Alan. I thank my hon. Friend the Member for Dudley North (Ian Austin) for securing this important debate. I note that as he said, it is just over a year since he first brought to the House a debate on cystic fibrosis.

I appreciate all hon. Members who have attended and spoken in this debate to show their support for the cause; it is one that we must urgently get right. Members have shared many moving cases involving their constituents whose lives Orkambi could save and would certainly transform. My hon. Friend the Member for Dudley North mentioned Carly Jeavons and Sam and Rob, the parents of Daisy. The hon. Member for Strangford (Jim Shannon) spoke about Evie-May, and my hon. Friend the Member for Bristol East (Kerry McCarthy) mentioned her niece Maisie. My right hon. Friend the Member for Leigh (Andy Burnham) spoke about his office manager Karen Aspinall and her son, as well as Philip and his sister Melissa, who sadly died. Philip believes that Orkambi would have helped his sister and would certainly help him, as he also suffers from cystic fibrosis. Those people believe that their lives would be transformed by Orkambi. I believe that too, and the evidence supports it, as we have heard in detail.

I thank all hon. Members who have spoken in this debate, including the hon. Member for St Ives (Derek Thomas), the hon. Member for Bath (Ben Howlett) and my hon. Friend the Member for Cambridge (Daniel Zeichner), for their excellent contributions, as well as the many others who have made valuable interventions. I also thank the Cystic Fibrosis Trust for its dedicated campaigning on the issue, and the 20,000 people who have been involved in its survey, in the digital debate here in Parliament, and in petitions and e-action. The concerns and the need for action are clear, and it is up to the Minister to give all those people beyond this place the answers that they need.

In my contribution, I will set out why the Opposition want to see the Government do more on innovative drugs, through case studies involving Orkambi. I will touch on issues of access to Orkambi and other drugs for those living with cystic fibrosis and expand into the recommendations of the accelerated access review, which can do much to address many of the issues involving access to new drugs.

Although it is welcome that the prescription drug Kalydeco was given the go-ahead by NHS England last week for two to five-year-olds as part of re-prioritisation, Orkambi remains an issue. There is currently a deadlock in negotiations between the pharmaceutical company Vertex, the Government and NHS England for the drug to be accessible to the 2,700 people who stand to benefit from it. As we have heard in detail today, that is all down to rejection of the drug under NICE’s appraisal system because there is a lack of long-term data. Although it is welcome that NICE recognises the treatment as effective in managing cystic fibrosis, it is clear that we desperately need a new system under which drugs can be better accessed, especially those that show that they can benefit patients. We have also heard about new data that NICE did not take into account and that would have showed 42% effectiveness.

Orkambi has been shown to halve the amount of hospitalisation of cystic fibrosis sufferers, and 96-week data published recently showed that it can help to slow lung function decline by 42%. The data are also backed up by anecdotal evidence from people who have accessed Orkambi through the compassionate use programme and are beginning to report transformations in their health—some are reporting enough improvement to come off the lung transplant list. That information is all positive. It should be made better available for consideration as part of the appraisal process; it should also form part of the negotiations between Vertex, the Government and NHS England. However, when we see a deadlock, all of that information is for naught. Thousands of people are suffering irreversible lung damage that could be stopped if the current impasse between those around the negotiating table was broken. Those who will suffer the most are stuck in the middle.

It is up to the Government to facilitate the end of the deadlock so that people can access Orkambi and see their lives transformed. One way to do that is to begin the job of implementing the recommendations set out in the accelerated access review, which the Opposition welcome. The goal of speeding up access to drugs by cutting four years off the time needed to bring new medicines to patients is something that we should all welcome; we need to see whether it can be achieved. The review has the potential to change the philosophy of the NHS in line with the five-year forward view, but also to help to maintain our global lead in life sciences. The recommendations set out in its final report have the potential to transform how we provide drugs and treatments, ensuring that we see innovation in drugs, diagnostic tools and healthcare developments. However, there still remain issues around thresholds for new drugs, which NICE and NHS England are currently consulting on. I understand that some associations and charities have raised concerns about that, and I hope that the Minister will update us on some of those discussions.

[Mark Durkan (Foyle) (SDLP)]

My hon. Friend is right to be so positive about many aspects of the accelerated access review. However, as she has mentioned, there are concerns that new definitional ruts could be created by some of the terms of the review, which could lead to some patients and some promising drugs being trapped in exactly the sort of deadlock that she has described.

[Mrs Hodgson]

My hon. Friend is right to raise those concerns. We do not want to move into a new system that will create new unintended consequences. Perhaps the Minister will touch on that in his speech.

Although some are calling for interim solutions to help people who are stuck waiting for the accelerated access review’s recommendations to be implemented, it is also important that the Government get on with implementing those changes. The review was announced more than a year ago and was published two months ago now. It is important to remember that the transformation that we all want to see will not happen straight away, but it is still right that we keep up the pressure for the recommendations to be implemented. There are many such recommendations, and I hope that the Minister will be able to update us today on the progress on each of them. There are two in particular that illustrate what can be done to resolve the deadlock around Orkambi—the immediate establishment of an accelerated access partnership and the setting up of a new flexible strategic commercial unit.

The accelerated access partnership is one way in which, through co-ordination and collaboration across the system, we could see drugs brought on to the market more quickly to benefit patients who need access to them. I would be interested to hear from the Minister what progress has been made on its creation, especially in conjunction with the issues surrounding the deadlock on Orkambi.

It is clear that the strategic commercial unit could help to benefit those who wish to see Orkambi offered on the NHS. The unit could work with those involved in this dispute to end the current deadlock through facilitation of the flexibility and transformational change promised by the accelerated access review. That would go some way towards helping to access data on drugs such as Orkambi and getting them out to patients. There is a willingness out there for that flexibility to be brought into the system; for example, the Cystic Fibrosis Trust has offered to use the UK cystic fibrosis registry to help to provide essential data that can help to prove how effective drugs can be and what more needs to be done. We have already heard how substantial that registry is; it includes 99% of sufferers. I understand that the trust’s offer has been welcomed by all sides in the negotiations but is blocked due to the lack of progress in implementing the changes set out in the review. I hope that the Minister will give us some clarity on when the unit will be created and when we can see a culture shift within the system that will allow for flexibility to accept data and information that show how much effect these drugs have on people’s lives.

--- Later in debate ---

[David Mowat]

There is no dispute that the drug works, and there is no dispute at all that it is life-changing. The issue before us is the extent to which it justifies a price tag of £300 million to £400 million versus other NHS priorities. All I can say on that is that it is right that the decision is not made by politicians, for the reasons given earlier by the right hon. Member for Leigh.

I was discussing the countries that have so far not authorised Orkambi. Neither Scotland nor the Republic of Ireland accepted that it was cost-effective, and it is not used in Scandinavia or Canada either.

[Mark Durkan]

The Minister mentioned Scotland and the Republic of Ireland, where there are clearly challenges—we only have to look at the pictures in The Irish Times yesterday to see the graffiti about Orkambi in Dublin. Will he commit to working with colleagues from across these islands to use the underdeveloped and underused machinery of the British-Irish Council to literally get our act together when it comes to rare diseases? We should combine our purchasing power when negotiating with the drugs companies and ensure that there are much better networks for referral and treatment. We should improve that collaboration and literally get our act together on these islands.

[David Mowat]

I, too, saw the press. I think the Republic of Ireland drugs Minister has talked about writing around to that effect, and it would be a great idea were we to use our combined procurement muscle in that regard. He is certainly pressing at an open door.

I wish to spend a little time talking about Vertex. The company owns the drugs we are discussing and is worth $18 billion. As well as looking at the NICE review last night, I spent quite a lot of time looking at Vertex’s financial position. The company needs to sell these products; indeed, its continued functioning as a major pharmaceuticals company depends on that. Its share price has fallen by a third during the course of this year—I estimate that is a loss of value of something like $7 billion—because its sales are not adequate. There needs to be a meeting of minds here. I am sure that people from Vertex are listening to this debate, as will people from other places, too. We all want a solution whereby the drug becomes available at a cost-effective price, but the negotiation is not a one-way street; Vertex is part of it as well. Were the company to come forward with different pricing data, those would be looked at very quickly. At some point in the future—I know it will be a long time—the drug will be available generically, although I accept that that will not give hope to some of the people we have heard about today.

In the couple of minutes I have remaining, I wish to discuss the accelerated access review, which was a manifesto commitment we made at the election. We set up the review panel. The basic intent was to enable transformative drugs to come forward more quickly and for there to be, as Members have mentioned, a commercial unit in the NHS that is empowered to do deals and bring treatments forward more rapidly. In October the review team and panel published the final report, to which something like 600 stakeholders contributed. It is a valuable piece of work and we know its direction of travel: bringing drugs into the system more quickly, allowing the NHS to set priorities for the drugs its wants, and giving drugs companies some notice and knowledge that if they develop drugs, they will be used. That will mean that a lot of the commercial discussions can happen earlier and progress can be made more quickly.

The Government are reviewing the results of the accelerated access review. There is much in it, if not all of it, that will be accepted, although I am not in the position to accept it today—that is not my role here. We do, though, want to make progress, which should give some hope for the potential of another review of the matters we have been discussing. Nevertheless, I must say again to Government and Opposition Members that the NICE process and the people carrying it out—they are rigorous scientists and serious doctors—need to be treated and understood with respect. We can all agree that the current situation is heartbreaking for many people. The world has a drug that would change people’s lives, but the world has not rolled that drug out to them because of real and reasonable financial issues. I accept that that is a very difficult thing to explain to people and it is very difficult to accept.

Motion lapsed (Standing Order No. 10(6)).

Contaminated Blood and Blood Products

Mark Durkan Excerpts

Thursday 24th November 2016 Commons Chamber

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

I pay tribute to my hon. Friend the Member for Kingston upon Hull North (Diana Johnson) for her strong campaigning zeal in relation to this subject. The contaminated blood and blood products scandal has touched the lives of many people over the past 40 years. Sadly, many people have died, leaving loved ones who had spent their lives caring for them. The scandal has not only affected those who are infected but changed the lives of their families as well. We have had many debates in the House and Westminster Hall calling for a full and final settlement for those affected, and what we see today is an improvement on what was offered to them in January, but we still have a distance to go if we are to give those people and their families the means to have a decent standard of living.

Questions remain unanswered as to why those infected blood products, which infected others, were imported from the United States—and perhaps other places—into Northern Ireland and Britain. I understand that the Under-Secretary of State for Health, the hon. Member for Oxford West and Abingdon (Nicola Blackwood), is not the Minister responsible for this matter, but I hope that she can answer my questions today. I hope that she will pursue Lord Prior to ensure that we get answers. As the right hon. Member for North East Bedfordshire (Alistair Burt) said, there is a collective shame surrounding this issue. It is an issue without political boundaries or barriers, because it has impacted on families throughout the UK.

I return to a point that I raised in an earlier intervention, to highlight the issues that we face in Northern Ireland. I have written to the Northern Ireland Health Minister, Michelle O’Neill, because there has not yet been an announcement on the scheme for Northern Ireland. She replied to me in early August, after the Prime Minister’s statement here in the Commons. She stated:

“I am currently considering options for the future of financial support for patients and families in the north of Ireland before making a decision.”

That is a similar answer to those that I received from her predecessors. There is no sense of urgency on their part, and no recognition or acknowledgment of the fact that this is a serious matter, which has impacted on people’s lives. I have written again to the Minister in Northern Ireland to urge her to address this matter as soon as possible, and I would appreciate it if the Under-Secretary here could raise it in any forthcoming discussions with her Northern Ireland counterpart.

An important point is that the affected people in Northern Ireland can stay in the current scheme as long as the English scheme remains unreformed, but once the new English administrator is in place—I hope it will not be Atos or Capita—the existing discretionary charities will close. That will leave my constituents and those of my hon. Friend the Member for Foyle (Mark Durkan), as well as other affected people in Northern Ireland, in great peril. We do not want that to happen. The Haemophilia Society has also raised this matter in its document.

I remind the Minister that the Irish Government took the courageous decision some years ago to accept liability for this tragedy, which has compromised the health and the immune systems of so many people, and to deliver a compensation scheme.

[Mark Durkan (Foyle) (SDLP)]

The House has been misinformed on this point a number of times in previous debates, and it is important to point out that the compensation scheme in the Irish Republic was established even before liability was acknowledged. The tribunal system and the compensation scheme were set up, and the subsequent acknowledgment of liability simply affected the quantum. The fact of compensation had already been established, and that is what is still missing in the UK.

[Ms Ritchie]

I thank my hon. Friend for his helpful intervention. He characterises the position in the Republic of Ireland, which illustrates clearly the acknowledgment that the needs of people came first, before all the other extraneous matters.

I welcome the fact that progress has been made, but there are still matters that the Government must address if they want to be responsible for the long overdue settlement that these people are entitled to and require. It is not clear what will be in place following 2020-21. People need time to plan and they should not have to worry that the scheme might deteriorate or be pulled out from under their feet. I am also concerned by the lack of clarity on support for dependants, bereaved partners and bereaved parents, both current and future.

I have spoken many times in the Chamber about constituents of mine who have been affected by contaminated blood, and they have given me permission to name them. One constituent I have known for most of my life, Brian Carberry, has to go to weekly hospital appointments. He also has associated health problems. Over a year ago, he was diagnosed with non-Hodgkin lymphoma. Thankfully, he is currently in remission.

Two other constituents are twins, Martin and Seamus Sloan, who live in Kilkeel. They are both haemophiliacs and both infected. Their lives have been turned upside down. They have difficulty keeping hold of interpersonal relationships, and their immune systems have been completely compromised. That means that they are exposed to many other types of illness, and they are therefore unable to work and to provide for their families.

The strain and challenges that the families of infected people face cannot be overlooked. It is a direct result of this tragic situation. There can never really be a remedy for those whose lives have been affected, but the Government can recognise their suffering and alleviate the financial strain that they experience as a result. The Government must also try to resolve what the right hon. Member for North East Bedfordshire described as the legacy of collective shame that goes back across many Governments, and to bring relief to the people affected. Sadly, some of those people have passed on.

Regular payments must be in place and discretionary grants must be available to all those infected and their families. Like my hon. Friend the Member for Kingston upon Hull North, who has been such a stout campaigner on the behalf of these individuals, I would also like some form of inquiry, but I do not want an inquiry to hold up whatever form of compensation will eventually become available. We need to find out the reasons and the causes and hold to account the people who did this to our constituents and the wider population. It must never happen again. The Government have made progress, but they must ensure a full, fair settlement that is allied to an inquiry, because that is what these people deserve, so vitally need and have long been owed. It is long overdue for those lives lost, compromised or damaged by bad health as a result of infected and contaminated blood products.

--- Later in debate ---

[Mrs Sharon Hodgson (Washington and Sunderland West) (Lab)]

It is a pleasure to speak in such an important debate. I want, first and foremost, to thoroughly thank my hon. Friend the Member for Kingston upon Hull North (Diana Johnson), who for many years now has championed and pushed on this vital matter. Her work cannot and must not go unnoticed or unrecognised. I am sure people across the country, and indeed across the House, will want to join in thanking her.

The experiences of those men and women affected by this awful scandal should never be out of our minds as we continue to do all that we can to support them. Doing all we can for them is paramount, knowing full well that whatever we do will not be enough to give them back their life or a life without suffering or pain. HIV and hepatitis are terrible conditions. Someone living with HIV or hepatitis will face fears of developing other conditions and have to face the stigma that comes with these conditions. This debate is welcome, as it is the first time the House has had the chance to debate the new scheme since it was announced and to continue to hold the Government to account to do more. It is important that we now have the chance to discuss that in a considered and comprehensive manner.

In my contribution, I want to touch upon three areas: first, the current funding system in England; secondly, the involvement of private companies to administer support to beneficiaries; and, thirdly, the need for an independent Hillsborough-style panel to recognise the failures of the system that these people have had to live with.

It was announced earlier in the year that a new financial arrangements system would be introduced, and a public consultation was conducted to get views and opinions on how that would take shape. Although there has been a welcome, if somewhat modest, increase in the annual payment to people with HIV, hepatitis C at stage 2 and those who are co-infected, as well as the first guaranteed ongoing payments for people with stage 1 hepatitis C, it is concerning that these payments fall short of what has been drawn up in Scotland.

Also, the current English system makes no mention of support for people who have been cleared of hepatitis C prior to the chronic stage but who, despite fighting off the disease, may still exhibit symptoms ranging from fatigue to mental health issues and even diabetes. These people have never been entitled to any support, and continue to get none. The scheme does not include support for those infected with other viruses, such as hepatitis B, D or E, and for those people it has meant continuous monitoring of their liver function. It is estimated that that group is extremely small and, according to the Haemophilia Society, would be a minimal cost to the Department of Health.

We find that the new scheme does little or nothing for bereaved partners, parents or children of those who have sadly died from diseases contracted through the contaminated blood scandal. The new system should have gone a long way to supporting those various groups within the affected community. I hope that the Minister can give us some reassurance that those concerns have been noted, and that she will go away and look into what more can be done to help the people I have just mentioned.

There are also concerns regarding the discretionary payments, which, thankfully, were saved, despite it being announced in the consultation earlier this year that they could be scrapped. That should be welcomed, but there is a clear concern that the discretionary support will not go far enough to improve the support on offer for those with HIV or those who are co-infected. The Government need to consider that impact and what more they plan to do. It is worrying that the Government have yet to make clear the minimum and maximum discretionary support that people will be able to receive.

I understand that the Reference Group on Infected Blood is currently considering that policy and that we will hear more from it in the new year, but would it not be worth while for the Minister to give us some indication now, so that those who will depend on this money in the years to come can have some reassurance, especially as we enter the festive period? There are many questions to be answered. That is why I hope that in the time allowed the Minister will give us in the House and those who will be watching the debate the reassurances that they need.

The new scheme will replace the current system so that the five trusts across the country that administer the payments are amalgamated into one, and I know that that has been welcomed. However, there is one very concerning point that was so eloquently put by my hon. Friend the Member for Kingston upon Hull North when she opened the debate and which needs to be addressed by the Minister. I refer to the potential involvement of a private sector company, such as Atos or Capita, which both bid in the tender process. The Minister no doubt expects me to make the typical party political point, but I am not going to do that.

That potential involvement was never included in any talks with the all-party parliamentary group on haemophilia and blood contamination, no consultation was held with the affected community, and there was no mention of it in the Department’s response to the survey, yet we see it happening now. The concern here is that the many thousands of people affected by the mistake—which, it must be remembered, was often made by US private companies—feel aggrieved at the potential involvement of a profit-making private company. That resentment is justified, especially as it was the mistake of a private company that put them in their current situation. There should be no profit making when it comes to compensating for the failures of the private sector. That was highlighted well by my hon. Friend in her speech and was also touched on by the former Health Minister, the right hon. Member for North East Bedfordshire (Alistair Burt).

The issue was highlighted too by the APPG’s survey of nearly 1,000 people affected by the scandal, who clearly had concerns about the involvement of a profit-making private company. It is important that those affected have their say in the administration of the payments and support. I would therefore be interested to hear the Minister’s thoughts on their involvement, as we have seen in Scotland, where there has been an alternative scheme operator which includes beneficiary involvement. Perhaps the Minister can tell us why private involvement is now being considered, but was never consulted upon.

My final point is about co-ordinating an independent panel, such as in the case of Hillsborough. The Prime Minister promised in September that she would keep an open mind about an independent panel, but she has, sadly, quashed the idea. The rationale given is that we have had two public inquiries into this matter already, by Lord Archer and Lord Penrose. That may be the case, but it is important that we consider the approach to helping people to get the justice they deserve, especially as it is clear that neither of the inquiries met the needs of the affected community. The two inquiries were narrow in their focus and were not about apportioning blame. The affected community is not calling for that. What it is calling for, which is strongly supported by the Opposition, is a truth and reconciliation process and public disclosure of the failures, which those affected rightly deserve.

[Mark Durkan]

On the need for some vehicle of inquiry into the background, in an intervention I pointed out that, in the Irish Republic, the right to compensation was established in 1995. There was an Act in 1997, but it was following a tribunal of inquiry that the state admitted liability, so there was further legislation in 2002. The liability of the Irish state rested on the fact that the tribunal found that the state knew that there was a risk and carried it because the UK and others were prepared to carry the same risk.

[Mrs Hodgson]

I am grateful for that important intervention, which emphasises why we need an inquiry into issues such as the one that the hon. Gentleman has raised.

I am sure the Minister can understand the concerns across the House and out in the community among the people affected and their families. Before she replies, I ask her not to adopt the same language as that used by the Prime Minister, who attributed the lack of support for an independent panel to the delay in the introduction of a support system. An independent panel with clearly defined terms of reference would not impede the development and implementation of the new system. I hope the Minister will keep that in mind when she responds, and recognise how important it is for those affected to get the reconciliation for which they have fought so long.

The Government must be committed for reforming the system and listening—must be commended, rather, for reforming the system and listening. I know they are committed to that. However, this is such an important issue that we must get it right, and once more I thank my hon. Friend the Member for Kingston upon Hull North for her steadfast campaigning on this issue over many years. I am sure the community will also recognise that fact. Those people who have had their lives marked so significantly by the failures of the past should rightly be compensated and respected. Those who have died because of that serious mistake, those who are still living with the repercussions of the mistake, and those who have thankfully fought it off but still live with the impact of it all deserve respect and dignity, and I hope that in her reply the Minister will give them just that.

Earlier Cancer Diagnosis: NHS Finances

Mark Durkan Excerpts

Tuesday 18th October 2016 Westminster Hall

[Mr Baron]

I agree completely. Briefly, the initiatives that could be introduced to promote earlier diagnosis are greater awareness campaigns, better diagnostics at primary care level, better uptake of screening in screening programmes, and better GP awareness—although this is not only about GPs. A whole host of initiatives could be introduced at the primary care level to improve survival rates and awareness generally. So yes, I completely and utterly agree.

Given the limited time available, I will make a little progress on the central point of this debate. We are pushing at an open door, which is fine; we are keeping a watching brief as a cancer community; and, as I have said, the Ofsted-style ratings have shown, among other things, that a big improvement is required. The all-party group on cancer will hold its annual parliamentary reception next summer—the Minister no doubt will be invited to that—at which we will focus on those CCGs that have most improved their one-year survival rates. The Britain Against Cancer conference, which we believe is the largest gathering of the cancer community in this country, will take place at the end of this year and will also focus on that issue.

We are therefore not walking away from the issue of survival rates, but we are saying as part of our watching brief that we wish to bring to the Government’s attention the fact that when it comes to cancer treatment, earlier diagnosis can not only help patients—diagnosing cancers earlier makes for better survival rates—but save a lot of money. The later cancer is diagnosed, the more aggressive the treatments and the higher the cost. That cost is quite significant, and the cost savings from earlier diagnosis could be ploughed back into treatment for patients. At a time when the NHS is under financial pressure, we suggest that too little attention is being paid to those potential cost savings. Too little work has been done by the NHS and too few health economists are looking at how reducing costs to such an extent would benefit both the taxpayer and, most importantly, patients.

Given the NHS’s lack of focus on that area, we have had to go to outside sources to give us some sort of measure of the potential cost savings. A September 2014 report by Incisive Health and Cancer Research UK showed quite a disparity between the cost of treating patients with early stage, or stage 1, cancer and those with late stage, or stages 3 and 4, cancer. For example, the cost per patient per year of treating colon cancer is £3,300 at stage 1 and £12,500 at stage 4—a near fourfold increase. Treating stage 1 rectal cancer costs £4,400; that goes up to nearly £12,000 if it is treated at a late stage. Treating ovarian cancer costs just over £5,000 per patient per year at an early stage, but £15,000 at a late stage. That report focused on four cancers: colon, rectal, lung and ovarian. They amount to only around a fifth of all cancers diagnosed, but if such cost savings were replicated across all cancers, we could be talking about savings of hundreds of millions of pounds, and that is before we even consider the number of patients who would benefit from earlier diagnosis, which Incisive Health cites as something like 52,000.

[Mark Durkan (Foyle) (SDLP)]

Will the hon. Gentleman give way?

[Mr Baron]

I ask for a bit of patience. Let me make a little progress, and if there is time, I will take further interventions.

That report also showed variation between the highest and lowest-performing CCGs in the proportion of patients diagnosed early. That is also important. In colorectal cancer the variation was threefold, in lung cancer it was fourfold and in ovarian cancer it was fivefold. It is clear that if we could ensure that all CCGs achieved the best rate of early diagnosis—the rate achieved by the top performing CCG—significant cost savings could be made.

Those are interesting figures. Many believe them to be conservative—with a small “c”—in the sense that we often forget the costs of treatment later on down the care pathway beyond diagnosis, but we are certainly talking about hundreds of millions of pounds. One could argue that that is a drop in the ocean when we are looking at the NHS budget, but patients—cancer patients in particular—could certainly benefit from a couple of hundred million pounds. In an age when it is all too easy for politicians to talk about spending more money, we are trying to focus on potential cost savings from encouraging earlier diagnosis. As prevalence rises—Macmillan Cancer Support believes there may be another half a million cancer patients in the next five years, in addition to the around 2.5 million we have at the moment—so will costs, so the need for such savings will grow in importance.

The most recent report of the all-party parliamentary group on cancer followed an oral evidence session with the then cancer Minister and key decision makers in NHS England, as well as written evidence from more than 30 cancer-related organisations. That report concluded that where the new initiatives outlined in the cancer strategy could save costs, those initiatives required more focus and attention. It is our opinion that there needs to be greater appreciation in NHS England and the Department of Health of the savings that earlier diagnosis offers. As I have said, there are too few health economists working in the NHS, and even fewer looking at this area.

As the Minister is well aware, when I raised that issue at Health questions last week, he correctly referred to some ongoing studies, including the three-year research project being undertaken by Macmillan Cancer Support in a related area. He also mentioned Public Health England, which is looking at cost-effective initiatives for colorectal cancers. Those studies are welcome, but I maintain that the approach is piecemeal. We need a root and branch approach to look more specifically at this area. We need to promote earlier diagnosis at CCG and health and wellbeing board level. We have the one-year figures. We must not allow this to become a tick-box exercise; the issue is far too important for that. There needs to be greater focus on how underperforming CCGs will be held to account for their rate of improvement.

The all-party parliamentary group on cancer will play its full part in that work. We are looking at other areas. We have achieved our goal of getting the one-year figures into the DNA of the NHS, and we certainly will not walk away. We are focused on several areas, including patient experience and rarer cancers. There cannot be a meaningful improvement in the one-year figures if rarer cancers are not included, as those account for more than half the cancers that are diagnosed. We will play our full part, which includes the annual reception and the Britain Against Cancer conference, but I would be interested to hear the Minister’s responses to the questions I have raised. What more does he believe the NHS can do to promote and focus on cost savings from earlier diagnosis? On behalf of the wider cancer community, and certainly the all-party parliamentary groups, including the cancer-specific groups represented by several hon. Members in the Chamber, may I request a meeting with the Minister to discuss this and other related cancer issues?

--- Later in debate ---

[David Mowat]

I thank my hon. Friend for that and for reminding us that at the core of the debate is a point we all agree on: early diagnosis is the key, whether it is for cost-saving purposes—I will come on to some of the points my hon. Friend the Member for Basildon and Billericay made on that—or to be cost-effective. There is no question that early diagnosis saves lives and that it is the right thing to do. Whether we argue a bit about precisely how much money is saved is in a way a secondary issue; it saves lives and it is the right thing to do.

I also want to acknowledge the intervention of the hon. Member for Strangford (Jim Shannon), who reminded us about the need for public health and GP awareness. In England we have had a significant increase in the number of referrals and the National Institute for Health and Care Excellence—latterly in England—has changed its guidelines for referral, which, together with the awareness issue, has increased significantly the number of people diagnosed in stages 1 and 2. We need to continue to make progress on that.

[Mark Durkan]

I commend the hon. Member for Basildon and Billericay (Mr Baron) for leading the debate and for the leadership he has provided on one-year survival rates through the APPG. Does the Minister accept the basic premise that value of life and value for money are not in competition? They are perfectly compatible. We can have better use of money with better outcomes because of better-timed treatments, and that also means there is better evaluation and research, which will feed into better education in a virtuous circle, to meet the point made by the hon. Member for Mole Valley (Sir Paul Beresford).

[David Mowat]

I thank the hon. Gentleman for his intervention and completely agree with the point he made. In this instance, there is no competition between saving money, saving lives and doing the right thing. In a sense, there is a secondary question as to just how much cost is saved, and the balance of cost saving versus doing more diagnostically, because in order to save lives, which is a highly cost-effective thing to do and the right thing to do, we need to do more on early diagnosis.

I have not yet got to the start of my remarks and I have a lot of pages to get through, so I will not be giving too much detail. It is worth acknowledging that cancer survival rates are increasing in the UK. In terms of improvement, between 2011 and 2015 we think something like 12,000 lives a year were saved. That exceeds the goals we set out in the cancer outcomes strategy in 2011.

Last year we saw a 91% increase in urgent GP referrals of patients with suspected cancer—that is another 822,000 patients. That shows a massive increase in NHS resources and all that goes with that, and we are beginning to see those early referrals, and the different guidelines GPs are using to refer, start to come through in the one-year survival statistics. However, as my hon. Friend the Member for Basildon and Billericay reminded us, that does not mean that we are the best in Europe. We need to continue the drive to improve.

The cancer strategy produced by the cancer taskforce is the backbone of what we are trying to achieve. The—I think it is fair to say—acclaimed strategy it produced, “Achieving World-Class Cancer Outcomes”, was published last year. It had 96 recommendations in it, and the Government accepted all 96. We are now putting in place an implementation taskforce. We believe that if we are able to make the progress we expect by 2020, a further 30,000 lives a year can be saved.

Recommendation 96 is the one we are talking about today. It essentially says that we need to do a lot more on early diagnosis because of the cost savings that will potentially arise from that. There are differing views in the Department of Health as to whether for all cancer types in all instances earlier diagnosis does save costs because of the increase in cost and effort associated with the diagnosis—the early screening and all that goes with that. That was not addressed overtly in Cancer Research UK’s “Saving lives, averting costs” report, which was mentioned by my hon. Friend. He quoted numbers of several millions of pounds, and there is no doubt that stage 4 cancer costs massively more to treat than stage 1 cancer, but whether or not there are clear cost savings in all instances and even if we dispute the detail of some of those numbers, we go back to the point made by the hon. Member for Foyle (Mark Durkan) that early diagnosis is the right thing to do. My hon. Friend also mentioned that there are not enough health economists in the NHS; the truth is there are not enough of lots of things in the NHS. Early diagnosis is certainly cost-effective in terms of lives saved, even if there may be some dispute as to whether it saves costs in all instances.

My hon. Friend mentioned the work being done by Macmillan, which I acknowledge. It is a three-year study, which we are looking forward to.

Carers

Mark Durkan Excerpts

Thursday 9th June 2016 Commons Chamber

[Dr Philippa Whitford (Central Ayrshire) (SNP)]

I pay tribute to the hon. Member for Eastleigh (Mims Davies) for securing this debate in carers week. Frankly, one week in the year is not enough; carers care for more than just one week in the year. I will talk predominantly about informal carers—the people who are looking after family—but we should also remember the people who work in the care industry, because they support the carers and the people who need caring for. We have problems getting high-quality care because we do not value those people. We pay them very poorly. They work for companies that often treat them badly. Pay for travel time may not be included, and they may be doing 15-minute visits. These jobs are therefore short term and temporary, and people get out of them as soon as they have the opportunity. Unless we turn this into a profession that is valued and respected and includes development—as we have done with nursing, over the years—our relatives and loved ones will not be cared for by people who actually want to do the job. I would just like to open with that.

We have heard a lot of detailed statistics about informal carers. Across the UK, 10% of people—6.5 million—are involved in caring. In Scotland, the proportion is higher, at 17%. People often do not identify themselves. Those carers are not always the same people, because there is a turnover—a change—every year of one third, or 2.1 million people. Some of them, as the hon. Member for Strangford (Jim Shannon) mentioned, will be people caring for loved ones at the end of their life. When we lose that loved one, although we may face other challenges, we leave the informal care group, but other people take up that role. The same number of people—more than 2 million—enter and leave the role of informal carer each year.

We have heard about the cost that informal carers save the state. If we were to replace them with professional staff, the cost would be almost greater than that of the NHS, but how do we treat the people who deliver that care? A third of them live in poverty. That is because we have tangled things up so much around carer’s allowance, and we never seem to have a “health in all policies” view, so on different days of the week we make decisions that absolutely counteract each other.

My hon. Friend the Member for Ayr, Carrick and Cumnock (Corri Wilson)—I hope I got that right—mentioned some of the changes that have been made, including to the personal independence payment and the employment and support allowance work-related activity group. Perhaps the Government think that those changes send people back to work, but the reality is that many of the people affected, particularly where mental health or waxing and waning illnesses are involved, will not get back to work. That household will simply become more impoverished. We need to realise that that has an impact. If someone cannot afford to do things, their quality of life goes down. People who are caring— 1.3 million of them for more than 50 hours a week—already have a pretty tough life without having to deal with poverty on top of everything else.

We have heard that carer’s allowance is some £62 a week; it is pretty insulting that that is less than jobseeker’s allowance. People tend to spend six or nine months on jobseeker’s allowance, but they may depend on carer’s allowance, along with other benefits, for much longer than that. To pay someone, in essence, £62 a week for the hours that they put in is derisory. In Scotland, if I may correct the hon. Member for Strangford, we are not just considering raising carer’s allowance to £72 a week; that is a commitment. It will become the same as jobseeker’s allowance. Even that is very much a baseline. It does not recognise what those people need.

Of course, there are people in caring situations for whom money is not an issue, because they have a pension or large amounts of savings, but they are not the generality of cases, if a third of carers are in poverty. Half of them have used up all their savings and have had to borrow. A quarter of them have had to re-mortgage their home. That all adds stress to people who contribute massively to society.

We have well over a million older carers, as the hon. Member for Bexhill and Battle (Huw Merriman) mentioned. What has not been mentioned in this debate is that people on retirement pension do not qualify for carer’s allowance. That seems bizarre, because one of the biggest groups of carers is people who are retired. In the past, people would have been caring for a partner as they became more frail, but as people are living longer, we are retiring people who are caring for a parent, or for a parent and a partner. The hon. Member for Eastleigh spoke of caring for little ones and older ones, but we actually have people who are caring for older ones and much older ones. That is massively challenging.

At the other end, we have heard mention of young carers, who are defined as those under the age of 16. They are completely excluded from carer’s allowance as it starts only at the age of 16, yet those children again play a major role and suffer major detriment. They will often be in a poor household, because the parent—as it usually is—for whom they are caring will have suffered from the various cuts to support. Their parent may have a physical or mental illness, may suffer from addiction, or may in other ways not be the parent in the family. If 12 and 13-year-olds are carrying that burden, and cannot afford to go on a school trip, and do not have time to do the little Saturday job or paper round that allowed the rest of us to invest in the height of fashion, we are allowing their quality of life to be lowered still further.

Young adult carers are defined as being 16 to 25. If they are students, they are automatically excluded from carer’s allowance, regardless of the fact that a quarter of them work more than 20 hours a week. If they work less than 35 hours a week, they do not qualify for anything. If they are official students, they qualify for nothing.

We have all these pockets of people who are working really hard, yet we as a state are offering no support to them. That is the minimum that we should be doing. They will still be doing a hard job and putting in long hours that save the country masses of money. We should all feel ashamed that they can have to choose between eating and heating, and that there are young people who have no opportunities and know that their job opportunities will be limited by going through that. Obviously, given my health background, I have looked at the health of these people, and they are twice as likely to be ill. Indeed, 8% of them are on disability living allowance as was, so we have someone who has frailty caring for someone else who has frailty.

One fifth of the people who are putting in more than 50 hours a week are not getting any services because, as has been mentioned, they do not identify themselves as carers, no one else identifies them as carers, and they have no idea where they should go to get help. I back the call that this should be part of the health service’s duty. If a doctor diagnoses someone with advanced cancer or dementia, or a child with disability, they should ask, “Who are the carers here?”. That is part of the primary care role in Scotland, but I am not sure what the roles are in England. Certainly, as part of the quality framework in Scotland, there must be that discussion. There is still room for improvement in our communities on that. People simply see themselves as looking after their family, but actually, they are looking after all of us.

We know that the ageing population will increase. We already have 800,000 people with dementia, who are being looked after by 670,000 carers. At the moment, 60% of us will be carers at some point. As the numbers increase, all of us must expect to spend a portion of our lives as a carer. If that always causes massive detriment to our work, our ability to do anything and our quality of life, we will have allowed the quality of life of everyone to deteriorate.

For women, there is a disproportionate hit, because 60% of carers are women, and one in four of those women will end up giving up work. As was mentioned, they end up in part-time, low-quality, low-paid jobs, and they do not get promotion. Right at the end, they get a rubbish pension, which, as we have heard in many debates in this Chamber, may be plucked out from underneath them. That is the last slap in the face. With modern technology, we should be able to have more home working and flexible working to allow people with talent and skill to remain active and have a career, even if they face a few years of having to commit to caring for someone. As we go into the future, whether we are carers or not, as politicians we need to make sure that we provide the basic funding and services to support carers as they support those who need help.

As individuals, we need to do more in our communities. We have heard mention of carer-friendly communities. I was honoured last Saturday to be part of the launch of one of my local towns, Prestwick, as a dementia-friendly community. It was a fantastic event, and the turnout of the community at the market cross for music, food, cupcakes, fiddling and singing by the wonderful Musical Minds choir, which is made up of people with dementia, was fantastic. The community is already coming forward, and local businesses have undergone training.

Within that, we have a group called Crossroads, which supports carers and allows them little informal breaks, so that they can try to keep some of themselves. Women are used to being recognised as somebody or other’s wife and somebody or other’s mother once they have got past being so-and-so’s daughter. The problem for somebody facing this intensity of care is that they can feel like they disappear altogether—that they as a person have no outside view at all. Their hobbies are gone and, as was mentioned earlier, their friends are gone.

It is important, not just as politicians and people in families, but as members of our communities, that we value and recognise carers if they are out and about, and accept the person they are caring for, no matter if they are a bit loud, if their wheelchair gets in the way, or if they need time to get on the bus. If we accept the person they are caring for, the carer will also feel more accepted in our communities. Basically, I call on everybody, because we all have a role to play.

[Mark Durkan (Foyle) (SDLP)]

Just as we must not lose our recognition of people, or identify them just by their disability, the fact that they need care or the fact that they are carers, it is important that we recruit carers to contribute to thinking on public policy—and not just when it relates to care issues; often, carers are disfranchised and disconnected from society because of their caring commitments. All of us at all political levels need to do more to engage carers, so that they contribute to a range of public policies.

[Dr Whitford]

I thank the hon. Gentleman for his contribution. I refer him back to the comments of my hon. Friend the Member for Paisley and Renfrewshire North (Gavin Newlands) about the Carers Parliament in Scotland, which looks at young carers, young adult carers and older carers. When they consult, the Scottish Government make great efforts to pluck people out of the voluntary world to come and tell them how it really is, because unless we hear how it really is, we are not going to fix it.

We all have a duty, including the Government, to look more at health in all policies. We cannot fix everything, but we should not be adding poverty on top of all carers’ other challenges.

Support for Life-shortening Conditions

Mark Durkan Excerpts

Tuesday 7th June 2016 Westminster Hall

[Stuart Andrew]

I certainly agree. As I mentioned earlier, it was staggering to see the smallest child come with so much equipment to keep them alive. Larger vehicles enable such families to do the things that every family likes to do, for example to go out for the day. The lack of such a vehicle often creates more isolation for the siblings I mentioned a moment ago.

[Mark Durkan (Foyle) (SDLP)]

Further to that point, does the hon. Gentleman agree that, given the sensitivity of the issue, as he has laid out so well, it is terrible that the basic message to those families who have a child with a life-shortening illness is that the reason they cannot get that support is that the child is not old enough? That is a perverse message for those families.

Junior Doctors Contract

Mark Durkan Excerpts

Thursday 19th May 2016 Commons Chamber

[Mark Durkan (Foyle) (SDLP)]

I do not wish to invite the Secretary of State to provoke or pre-empt by presumption, but if the agreement changes the shape of services, it will have implications for other health professionals. Is he prepared to have the further conversations that will need to be had, and the wider conversations that will be needed with his ministerial counterparts across these islands on workforce planning, professional education and training?

[Mr Hunt]

We are, of course, willing to have those discussions with colleagues in other parts of the UK. The hon. Gentleman is right to say that having a seven-day service does not just involve junior doctors; it involves widespread changes across the service. I should say that nurses, healthcare assistants, porters, cleaners—other people who work in hospitals—already operate on 24/7 shifts, so the changes necessary to those contracts are much less profound than they are to some of the doctors contracts, which is why it is important that we change not just the junior doctors contract, but the consultants contract. The fact that we have been able to reach a negotiated agreement with the junior doctors bodes well for the consultants contract, which is the next step.

Oral Answers to Questions

Mark Durkan Excerpts

Tuesday 10th May 2016 Commons Chamber

[Mr Hunt]

I thank the hon. Lady for her reasonable tone and absolutely give her that assurance. We have always wanted a negotiated outcome to this dispute. That is why we paused the introduction of the new contracts last November to give talks a chance to succeed, and it is why this week I have said we will further pause the introduction of the new contracts to see whether we can get a negotiated outcome. We want a motivated workforce and we are highly cognisant of the fact that hospitals that offer seven-day care and higher standards of care for patients are the very hospitals that have some of the highest levels of morale in the NHS. It takes two to tango, and I very much hope that the British Medical Association will play ball and its part this week in helping us to deliver a safer seven-day NHS.

[Mark Durkan (Foyle) (SDLP)]

6. What steps he is taking to improve the outcomes of people with rarer cancers.

[The Parliamentary Under-Secretary of State for Life Sciences (George Freeman)]

The extraordinary pace of progress in biomedical science, not least in genomics and data, is transforming our understanding of cancer. It is leading to greater identification of more rare cancers, and indeed to more diseases becoming rare diseases. That is why we have invested so heavily in Genomics England and set up the 13 genomic medicine centres around the UK, leading in cancer and rare disease diagnosis. I am delighted that we are now setting up a Northern Ireland General Medical Council, which will collect 17,000 samples. We will implement the recommendations of the independent cancer taskforce on diagnosis and we are setting up a series of regional genetic laboratories and infrastructure. I believe the hon. Gentleman will be able to see that we are investing heavily in making sure we lead not only in the science but in the adoption of genomic medicine in the NHS.

[Mark Durkan]

I thank the Minister for all that, but remind him that there is concern about the implications of the cancer drugs fund details, as they will affect people with rare cancers. Is he prepared to promote progress on rare and less-common cancers as part of the new work programme for the British-Irish Council? The challenges of small patient numbers, thinner investment in research, and symptoms being less well known are not confined to his jurisdiction.

[George Freeman]

The hon. Gentleman makes an important point. In both Northern Ireland and the Republic, I have seen some great leadership in this field, and as the UK Parliamentary Under-Secretary of State for Life Sciences, I would be delighted to pick this up through that council, and suggest that our nations, working together, can collaborate better, not least in implementing the accelerated access reforms that I am putting in place. Those reforms, aligned with the cancer drugs fund in its revised format, should see us able to accelerate the adoption of drugs for rarer cancers for patients’ benefit.

Lewy Body Dementia

Mark Durkan Excerpts

Tuesday 26th April 2016 Westminster Hall

[The Minister for Community and Social Care (Alistair Burt)]

It is a pleasure to serve under your chairmanship, Sir Alan. I congratulate the hon. Member for St Helens North (Conor McGinn) on securing the debate and raising the important issue of awareness and recognition of dementia with Lewy bodies. I thank him for his kind personal remarks about my weekend activities, when I ran the London marathon. He is probably unaware that the Chair and I also have a sporting connection. Many years ago, we took part in a charity penalty shoot-out between English and Scottish MPs at Ibrox stadium in front of 50,000 people. That is not the normal size of crowd that the Chair or I play football before, but we enjoyed the occasion immensely. A sporting connection runs through us all.

I congratulate the hon. Member for St Helens North on his recent appointment as ambassador for the Lewy Body Society, and on the way in which he has raised the debate and brought the issue to the Chamber. As always, I thank colleagues in the House who show an interest. I thank the hon. Members for Strangford (Jim Shannon) and for Foyle (Mark Durkan) as well as my hon. Friend the Member for Vale of Clwyd (Dr Davies) for their attendance.

I agree with the hon. Member for St Helens North about Lewy body dementia touching many families. My wife’s uncle has recently been diagnosed, and I would like to thank her and all the other members of the family who are caring for her uncle as well as the staff at the care home and social services, who have also been involved. That brings home that dementia and its variants is something that many families can expect to experience. The debate is therefore timely and raises issues that are important to all of us.

The hon. Gentleman set out well some of the symptoms of DLB and issues relating to diagnosis. I cannot better that; I will not describe the symptoms because he did that extremely well. Diagnosis can be difficult. A GP can do some simple checks to see whether there is a chance that someone could have dementia and then refer them to a memory clinic or other specialist clinic if necessary. At the clinic, the person will be asked about symptoms and have a physical check-up and memory test, and they may also have blood tests and brain scans. The results of those checks and tests will give the doctor a good idea as to whether the symptoms are caused by dementia with Lewy bodies, another type of dementia or something else entirely. It is complex and, as the hon. Gentleman said, it is reckoned that perhaps 4% of all recorded dementia may be accounted for as DLB, but it may in fact account for 10% of all cases because it tends to be mistakenly diagnosed as another condition.

That brings up the question of research, which I will turn to before more general remarks about our approach to dementia generally because the hon. Gentleman raised that as a matter of some importance. The 2020 challenge sets out the aspiration to see research funding in dementia double by 2025 and relates to funding from all sources, including industry and charity. Through initiatives including Dementias Platform UK, the Dementia Research Institute, Join Dementia Research, the international drug discovery fund and the accelerated access review, we are creating a highly attractive environment for industry investment, including new targets for drug development. We also anticipate that greater public awareness achieved through the 2020 challenge and charity campaigns will lead to increased philanthropic donation to research charities.

On how particular funding is determined and which research projects are selected, funding panels made up of academic researchers, subject experts and patient and public advisers advise on decisions as to which projects should be funded within NIHR funding programmes, within the remit of each programme, determined by quality. On DLB specifically, as the hon. Gentleman said, the National Institute for Health Research funds the NIHR Newcastle biomedical research unit in Lewy body dementia, which is part of the NIHR dementia translational research collaboration, TRCD. However, other biomedical research units and centres that make up TRCD also do research in the area, including the NIHR Maudsley biomedical research unit. That accelerates the translation of dementia research from basic science to early-phase clinical trials, focusing on the three common late-onset dementias—Alzheimer’s, vascular and Lewy body dementia—and on fronto-temporal dementia with motor neurone disease.

Other major NIHR investments include improving the diagnosis and management of neurodegenerative dementia of Lewy body type in the NHS DIAMOND-Lewy study, which the hon. Gentleman mentioned. The chief investigator, to whom we pay tribute, is Professor John O’Brien of the University of Newcastle. Funding for that major programme of work is just over £1.9 million, which lasts from January 2014 to December 2018, and it is expected to result in an increase in the number of dementia with Lewy bodies cases diagnosed and to improve their care considerably.

We are very keen to see NIHR research programmes and to fund high quality proposals in dementia where those are within remit. In terms of future spending, there will be announcements on the Dementia Research Institute in due course about competition for membership. The content of the scientific programme will depend partly on the composition and directorship of the DRI, which is to be determined by competition, but I will ensure that the hon. Gentleman’s specific pleas in relation to DLB are passed through into the process and go to the Minister who is primarily responsible.

Let me say a little about further recognition of dementia into which this fits, because that is important. The hon. Gentleman was gracious enough to recognise that this issue continues to be of the highest priority for the Government. It is not a party matter in any way, as he made clear. In 2015, the Prime Minister set out his vision for dementia over the next five years, with his challenge on dementia 2020. The implementation plan, which was published last month, sets out the actions that partners—including those across health and care—will take to ensure that those commitments are delivered.

An accurate diagnosis of dementia is key to helping people live well with the condition. As my hon. Friend the Member for Vale of Clwyd said, more people now receive a diagnosis of dementia than ever before and it is reassuring to know that in the constituency of the hon. Member for St Helens North, 87.9% of people with dementia have received a diagnosis, which is significantly above the national average. I commend and praise the relentless efforts of those providing care and support to people with dementia. Again, he set out a moving case in relation to that.

[Mark Durkan (Foyle) (SDLP)]

In the context of the Prime Minister’s commitment in challenge on dementia 2020, which is very welcome, he has committed to roll out a national standard for tailored packages of post-diagnosis support. Will the Minister commit to ensuring that, when that standard emerges, it will be articulate enough to address DLB specifically?

[Alistair Burt]

It would be best for me to take specific requests on DLB back to the Department. I will write to hon. Members who have taken part in the debate with a response to that in due course. I hear and understand the hon. Gentleman’s point, but let me reflect and come back.

I return to those who are looking after people. The families and carers and the hundreds and thousands of health and social care staff who work tirelessly to deliver high quality, compassionate, personalised care always require and deserve a mention in any discussion of dementia and those involved.

The work we have done to improve diagnosis rates has meant that more people than ever can access the advice, care and support they need to help them, their carers and families live well with the condition. We now need to focus our efforts on reducing local variation in diagnosis rates and the care and support that people require. The diagnosis is only the start. We also need to ensure that every person diagnosed with dementia, and their carers, receive meaningful care following their diagnosis. To be clear, the needs of the person with dementia, their family and carers, should be at the heart of everything we do. We therefore want to see more consistent provision of innovative and high-quality dementia care delivered in a way that is personalised and appropriate to the specific needs of the individual. I have been fortunate enough to see at first hand some of the high- quality dementia care provided across the country and have been impressed with the culturally sensitive care and support, catering for a diverse range of dementia needs.

We also want people across England to have a greater understanding of dementia and what they can do to make a real difference to people living with the condition. I am pleased to say that there are now more than 1.5 million dementia friends in England and the Alzheimer’s Society is working to deliver an additional 3 million by 2020. I am grateful to the representative who talked to me and gave me some basic advice to help me become a dementia friend. In St Helens North there are reckoned to be over 6,500 dementia friends. Furthermore, local work such as that undertaken by the Dementia Action Alliance, the Life Story Network and National Museums Liverpool in neighbouring cities is helping support people, their families and their carers live well with dementia in their local communities.

I thank the hon. Gentleman for raising the nature of the debate and for being so specific, mentioning the work of the Lewy Body Society. I note that when he was appointed as an ambassador to it, he was quoted as wanting

“a commitment from the Department of Health to ensure that recognition for DLB is an integral part of strategies to tackle dementia.”

I assure him that we want everyone diagnosed with dementia to receive meaningful care following their diagnosis, and that very much includes those with dementia with Lewy bodies.

The fact that the hon. Gentleman has taken the trouble to raise the issue for debate, that he did so in the way in which he did and that he paid tribute to those who work in this area has done an immense amount just in this debate to raise the profile of Lewy body dementia and to secure commitment and recognition from the Department.

As a result of the debate, I will write to the hon. Gentleman with some answers to the specific questions he asked. I thank him for the way in which he did that and I hope that, through what we have said this morning, our commitment to dementia—to those suffering from it, to those who care for them and to all those involved in its research and treatment—has been made clear. This is a Parliament-wide commitment, which we all share. I am pleased to have had the chance to answer the debate.

Motion lapsed (Standing Order No. 10(6)).