Oral Answers to Questions

Baroness Ritchie of Downpatrick Excerpts

Tuesday 25th November 2014 Commons Chamber

[Mr Hunt]

No, I will not support the hon. Gentleman’s Bill.

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

Given the uncertainty of the French and German Governments on the investor-state dispute settlement mechanism, as well as the indication by EU Commission President Juncker that he will not back it, why have this Government not done more to protect the health service from a practice that would leave it vulnerable to private sector intervention?

[Mr Hunt]

This is what the EU chief negotiator said to the former Labour shadow Health Secretary, who is chair of the all-party group on TTIP:

“the rights of EU Member States to manage their health systems according to their various needs can be fully safeguarded…There is no reason to fear either for the NHS as it stands today or for changes to the NHS in future as a result of TTIP.”

It could not be clearer than that.

Ovarian Cancer (Gene Testing)

Baroness Ritchie of Downpatrick Excerpts

Tuesday 4th November 2014 Westminster Hall

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

I am pleased to serve under your chairmanship, Mr Caton, and I am grateful to have secured this vital debate on ovarian cancer, and more specifically on the implementation of genetic testing techniques for every woman diagnosed with the illness. Ovarian cancer affects more than 6,500 women in the UK each year, making it the fifth most common cancer among women. In fact, more than 150 women a year are diagnosed with the disease in Northern Ireland alone. It is most common in women—

--- Later in debate ---

On resuming—

[Ms Ritchie]

Again, it is a pleasure to serve under your chairmanship, Mr Caton. I am pleased that the Minister is here to respond on this delicate, critical and vital issue for women.

Ovarian cancer is most common in women who have had the menopause, but it can affect women of any age. Notably, the symptoms can be difficult to diagnose, as they are common to many other less serious ailments. Sadly, that leads to many women not getting the treatment they need quickly enough. It is the most aggressive gynaecological cancer. Only about 40% of women are still alive five years after being diagnosed, according to research in the British Medical Journal.

[David Simpson (Upper Bann) (DUP)]

I congratulate the hon. Lady on securing this debate. As she knows, I do a lot of work in my constituency with the Mandeville cancer unit. When I visit it, I see a lot of younger women who have the disease. Hospital staff tell me that early intervention is one of the ways that it can be resolved, so I fully support the hon. Lady in her bid today.

[Ms Ritchie]

I thank the hon. Gentleman his intervention. I agree that it is all about early diagnosis. Women who are diagnosed in the early stages of ovarian cancer have a 90% chance of surviving the next five years, but if the cancer is found at a later stage the five-year survival rate is reduced to 22%—quite a startling statistic. Clearly, early diagnosis and treatment is vital.

[Jim Shannon (Strangford) (DUP)]

I thank the hon. Lady for bringing this important issue to the House’s consideration. Some 39% of women carry the harmful BRCA1 gene and up to 70% carry the BRCA2 gene. Does the hon. Lady think that those with a family history of the disease should be tested earlier to ensure they have regular check-ups and screenings? Does she also think that those outside that 39% should have checks?

[Ms Ritchie]

I thank the hon. Gentleman for his intervention. I agree that early diagnosis of ovarian cancer is the key for women.

UK survival rates for ovarian cancer are among the lowest in western Europe, with one woman dying every two hours from the disease. Sadly, according to the Department of Health in Northern Ireland, survival rates for the cancer have not improved significantly since the early 1990s. Dr Miriam McCarthy of the Public Health Agency in Northern Ireland pointed out at a recent hearing in Stormont that the northern European and Scandinavian countries have five-year survival rates above 40%, so we could clearly do more to combat the cancer.

Anybody who has personal or familial experience of this dreadful illness knows the devastating impact it has. In Northern Ireland, a lady called Una Crudden courageously documented her fight with the disease and inspired many others to do the same. I know of a young lady, a teacher in my constituency called Oonagh Carson, who died last year shortly after diagnosis, which took her a long time to get.

[Paul Burstow (Sutton and Cheam) (LD)]

I congratulate the hon. Lady on securing this debate. My aunt died of ovarian cancer some years ago.

One of the areas that I am sure the hon. Lady wants to highlight is the role of genetic testing for ovarian cancer and the BRCA gene. Is she aware of the work that is being led by the Institute of Cancer Research in conjunction with the Royal Marsden on mainstreaming genetic testing in this area? That programme has already produced a free-to-access pathway that has already enabled 200 women to be tested and could be rolled out to other hospitals. It has been shown not to cost any more, but it can save many lives.

[Ms Ritchie]

I thank the right hon. Gentleman for his useful intervention, which highlights the need for genetic testing and the good pilot work that is being done at the Royal Marsden. It is a pity that that work cannot be rolled out in England, Northern Ireland and Wales. We must not forget that such work has already been executed in Scotland.

By better informing the public and GPs and implementing modern genetic testing techniques we can prevent many more women and their families having to live through the trauma of ovarian cancer. I want to focus on genetic testing techniques that have become available and will have a key role in the battle against this dreadful disease. Genetic techniques have rapidly moved out of the realms of science fiction and are having a significant impact on the way we approach and treat illnesses. Without overstating scientific advances and promising miracle cures, we have a responsibility to utilise those groundbreaking new techniques in everyday medicine. As we learn more about the genetic basis for diseases and certain cancers, this becomes not only a medical issue but an issue for society as whole.

There is an onus to manage and develop new information in a responsible, morally sound way that informs people, rather than distressing or panicking them. The public have been made more aware of those techniques by high-profile figures telling their stories. For example, Angelina Jolie has spoken about the tragic death of her mother from ovarian cancer and her decision to have preventive surgery. Mainstream awareness can only be a good thing, but we must harness it positively to empower women to make informed choices about their treatment. Speaking about her experience of genetic testing and of dealing with the illness, Angelina Jolie said:

“Wherever I go, usually I run into women and we talk about health issues, women’s issues, breast cancer, ovarian cancer. I’ve talked to men about their daughters’ and wives’ health. It makes me feel closer to other people who deal with the same things and have either lost their parents or are considering surgeries or wondering about their children.”

In the same way, women in Northern Ireland and elsewhere in the UK who have or are at risk of the disease are desperate to have access to the information that advanced genetic testing can reveal. The genetic testing normally involves having a sample of blood or tissue taken. The sample will contain cells containing DNA, which can be tested to find out whether someone is carrying a particular mutation and is at risk of developing a particular condition or illness.

Specifically, BRCA1/2 gene testing, which was referred to by the hon. Member for Strangford (Jim Shannon), has emerged as the leading genetic test related to ovarian cancer. We all have these genes, but a mutation on them can increase the risk of developing ovarian cancer from one in 54 to approximately one in two. Evidence shows that one in five women with non-mucinous epithelial ovarian cancer, which accounts for 70% of all cases, carries the BRCA1 or BRCA2 mutation, which dramatically increases their risk of developing the disease. The BRCA gene test at a time of diagnosis offers patients the best guidance for their treatment and should be a matter of priority to ensure that the optimal treatment pathway is selected, whether that is drugs or preventive surgery.

Critically, a BRCA test at a time of diagnosis can change the management of their treatment and save the lives of relatives, who can also be guided toward taking the test. Women in possession of this knowledge are able to make better decisions on their own treatment, as can their close relatives. They can make better informed decisions on surgical and drug treatment options. Indeed, the presence of the mutation points to a form of the disease that responds better to PARP inhibitor drugs, such as the new drug Olaparib, on which the European Commission is considering a recommendation for approval. Dr Sadaf Ghaem-Maghami, senior lecturer and honorary consultant in gynaecological oncology at Hammersmith hospital in London, has stated:

“PARP inhibitors are more effective at killing cancer cells and shrinking tumours in patients with BRCA 1/2 than those without. They are particularly important for BRCA1/2 patients who have a recurrence of ovarian cancer, and for whom there might not be many options.”

In short, I contend that it is clear that we need to implement a system across the UK and Northern Ireland where women diagnosed with ovarian cancer automatically receive a BRCA gene test and have the option for close relatives to take that test as well. I have no doubt that that would save lives and put women in a position where they can make decisions based on all the available scientific evidence. What is the Minister’s position on that?

On cost and commissioning, such techniques have unfortunately not received the attention or funding they deserve from NHS commissioners or the Department of Health in England and Wales or the Department of Health, Social Services and Public Safety in Northern Ireland. Despite qualifying under National Institute for Health and Care Excellence guidelines and despite the introduction of mandatory testing in Scotland, the tests are not uniformly available across the UK. It is also evident that clinicians and practitioners in Northern Ireland and England are unclear who is responsible for commissioning BRCA testing. Can the Minster provide clarification on those arrangements and confirm that testing qualifies under NICE guidelines?

BRCA testing has been highly selective and based largely on family history, which risks missing out on three out of four people with the gene, according to the charity Ovarian Cancer Action, which I commend on its work. It published a report some time ago and has been at the forefront of this campaign. It argues that all women with non-mucinous epithelial ovarian cancer should be considered for the test on diagnosis. It should be clarified and reiterated that the procedure is already in place in Scotland. Trials at the Royal Marsden hospital, which were referred to by the right hon. Member for Sutton and Cheam (Paul Burstow), show that such testing could be extended in a cost-effective manner to England, Wales and Northern Ireland.

[Paul Burstow]

The hon. Lady is absolutely right to emphasise that point. The research evidence shows that productivity is increased by doing the testing as part of an oncology appointment, rather than as something separate. The trials are delivering that in a way that is not costing the NHS more, and it is having huge benefits.

[Ms Ritchie]

I totally agree with the right hon. Gentleman. It is estimated that a BRCA1/2 gene test for someone already diagnosed with ovarian cancer costs the NHS between £600 and £850. Associated counselling can cost between £250 and £500. Together, that can amount to approximately £1,000 a patient. Some 15% to 20% of those tested are likely to receive a result that shows they have the gene mutation. There are likely to be additional costs for resulting tests on close family members, but the early diagnosis and treatment of those individuals will be especially beneficial. The evidence shows that BRCA gene testing is cost-effective in other countries. Modelling conducted in association with NICE guidelines on familial testing suggested that BRCA1/2 gene testing versus no gene testing was particularly cost-effective in women aged 35 to 55.

In conclusion, this disease is one of the most prominent threats to women’s health. It is particularly difficult to diagnose and treat early, and it is obviously devastating and very sad for sufferers and their families, but we are on the cusp of being able to treat it more effectively. Through the introduction and implementation of genetic testing on diagnosis, we can make a significant impact on survival rates and familial guidance. Will the Minister inform us what the Department’s position is on automatic BRCA gene testing for women diagnosed with ovarian cancer? What discussions has she had with NHS Scotland about its existing programme? What discussions does she plan to have with counterparts in Northern Ireland and Wales about such measures? It would be welcome if she could provide clarification on who is responsible for implementing BRCA testing, as there is a degree of confusion over the current arrangements.

In bringing forward modern genetic testing techniques, we can improve survival rates for this terrible and sad illness and put us, as women, in a more empowered position where we can make the best informed decisions on our treatment and the well-being of our close relatives. I look forward to the Minister’s response to the various issues I have outlined.

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

I thank the hon. Member for South Down (Ms Ritchie) for bringing this important issue to the House today. She has a long-standing interest in health issues and she has made the case very well for why we need to look closely at this important disease. I will come back to her after the debate on any point that I am not able to respond to now, particularly the technical aspects. I want to give the House a bit of the picture on what else is happening on ovarian cancer, as well as addressing the specific issues that she raised.

As the hon. Lady said, ovarian cancer is the fifth most common cancer for women in the UK. The current five-year survival rate is 44%, but we know that if we get the critical early-stage diagnosis, up to 90% of women survive for at least five years. We know that we could save 500 additional lives each year if we matched the best European survival rates. The debate comes at a poignant time for me, because I lost a very dear friend to ovarian cancer less than three weeks ago. I am well aware of the pressure that the disease brings to bear on the families of those affected. We are investing an additional £750 million over four years in England to improve early diagnosis, and I will discuss the details of that and of treatment later.

The hon. Lady’s speech focused on testing and the BRCA1 and BRCA2 genes. As she rightly said, a family history of cancer is one of the most important risk factors for ovarian cancer, with about one in 10 ovarian cancers being caused by an inherited faulty gene such as the two to which she referred. Incidentally, the genes also increase the risk of breast and prostate cancer. We know that women with a mother or sister diagnosed with ovarian cancer have three times the risk of ovarian cancer of women without such a family history.

NICE’s most recent guidelines recommend offering genetic testing to people with a 10% risk of carrying a BRCA mutation, which is lower than the 20% risk previously recommended. I remind hon. Members that NICE clinical guidelines represent best practice and that we expect NHS organisations in England to take them fully into account when designing services to meet the needs of the population. As a result of their complexity and the different states of readiness for implementation in the NHS, clinical guidelines are not subject to the same statutory funding regulation as technology appraisals. Clinical guidelines therefore have a slightly different status, but it is none the less important that NICE has revised them. NHS England is considering the new recommendation in developing and publishing a single national clinical commissioning policy to confirm the routinely funded NHS threshold for testing.

Like the hon. Lady, I thank Ovarian Cancer Action for all its work in this area. The recently released report on BRCA testing raises important issues, some of which were aired in the hon. Lady’s speech and in interventions. NHS England has said that moving to routine testing at a 10% risk would require a significant capacity and funding investment in genetic testing, diagnostics, counselling and treatment. NHS England is currently considering the potential for funding a revised 10% testing threshold in 2015-16 as part of its annual funding prioritisation process. I will draw NHS England’s attention to the strength of feeling in this debate and to the interesting points that my right hon. Friend the Member for Sutton and Cheam (Paul Burstow) and the hon. Member for South Down made about cost-effectiveness. I will also stress that Parliament continues to have considerable interest in the subject.

The hon. Lady touched on groundbreaking techniques, which provides me with an opportunity to refer to the 100,000 genomes project. We can see the potential of genomics to understanding cancers and rare illnesses and finding new treatments. In 2012, we launched the 100,000 genomes project, through which 100,000 whole genomes from NHS patients will be sequenced by 2017. The project will focus on patients with a rare disease and their families, as well as patients with cancer. Ovarian cancer is in the programme’s scope, and it will hopefully enable us to continue our record of groundbreaking cancer research here in the UK.

I will update hon. Members on the two major screening trials for ovarian cancer taking place in the UK. The first is looking at two possible techniques: trans-vaginal ultrasound and a blood test for cancer antigen CA125. Both of them are being tested as part of the UK collaborative trial of ovarian cancer screening. The study is being funded by the Medical Research Council and Cancer Research UK, with the Government funding the NHS costs of the study. The first phase of results was promising for both techniques, and the final results are due in January 2015. The UK National Screening Committee, which advises the Governments of England, Scotland, Wales and Northern Ireland on screening matters, is preparing to assess the results of the trial against its internationally recognised criteria for a screening programme and to make a recommendation on that basis, which could be a significant move forward. A second study, the United Kingdom familial ovarian cancer screening study, which began in 2005, is also looking to develop an optimised screening procedure for ovarian cancer in high-risk women, such as those to whom the hon. Lady referred.

Returning to early diagnosis, there is cause for encouragement, but we must continue to consider early diagnosis at every possible moment. The hon. Lady is right to draw attention to the impact of early diagnosis on survival rates. The Government have committed £450 million to achieving earlier diagnosis and improving survival. The funding supports improved direct GP access to four key tests, including non-obstetric ultrasound, to help with speedier diagnosis of ovarian cancer. Those tests are being used; in June 2014, GPs requested more than a quarter of all tests that may have been used to diagnose cancer under the direct access arrangements. The test with the highest proportion of GP referral was ultrasounds that may have been used to diagnose ovarian cancer, 46% of which were requested by GPs.

I also want to update the House on the “Be Clear on Cancer” preventive work in England. We want to improve outcomes for women, which is what Public Health England is working towards. With the Department and NHS England, it ran a regional “Be Clear on Cancer” ovarian pilot campaign early this year to raise awareness of the symptoms of ovarian cancer. Like other cancers with poor survival rates, many of the early symptoms can be similar to those of benign conditions, making early diagnosis difficult. The next step is to assess thoroughly the data from the regional pilot, which will help us make informed decisions about which cancer and symptom-awareness campaigns to take forward in 2015-16.

On research, the National Institute for Health Research’s clinical research network is currently recruiting patients to more than 30 ovarian cancer clinical trials and studies. In partnership with Cancer Research UK, the NIHR is also funding 14 experimental cancer medicine centres across England, six of which have a focus on ovarian cancer. A good amount of research is ongoing.

In addition to giving some sense of where NHS England is on BRCA testing, I hope that I am also providing a rounder picture of what else is going on in the field, including screening, diagnostics and awareness campaigns. It is important that the matter gets this level of attention.

[Ms Ritchie]

Has the Minister had any discussions with the NHS in Wales and in Northern Ireland? Like her, I have personal experience from knowing people who have died. Perhaps their situation could have been made easier had they had much earlier diagnosis.

[Jane Ellison]

Although the decision is one for NHS England, the debate has highlighted the fact that interesting work is going on in Scotland. The scale of the challenge is smaller in numerical terms, but I am interested in finding out more about what is going on. I will certainly initiate a conversation to understand what is going on in the four countries of the United Kingdom. I have regular conversations with Health Ministers from other nations for other reasons, as the hon. Lady knows. It may not be possible to raise this specific issue in those conversations, but I will ask for more information to see whether lessons can be learned and to understand the points identified in studies about the cost-effectiveness of early testing, in order to ensure that we have bottomed that out.

I hope that this short debate has served to highlight the issue’s importance. I am always grateful for an opportunity to discuss such important issues and to ensure that the House expresses its interest in making better progress on cancers with the poorest survival rates. I hope I have also updated the hon. Lady and other interested Members on what else is going on to try to improve outcomes for family and friends and to achieve better results in future. I thank for bringing the debate to the House today.

Oral Answers to Questions

Baroness Ritchie of Downpatrick Excerpts

Tuesday 21st October 2014 Commons Chamber

[George Freeman]

I can absolutely provide that guarantee. UK sovereignty on health is not in any way threatened by TTIP. As I have already told the House, safeguards on this are being built in by both the American and the European negotiators. As my right hon. Friend points out, clinical commissioning decisions in the NHS will rightly remain with the clinical commissioning groups, which include the people who are closest to the patients.

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

For the avoidance of any doubt, given that health is devolved to Northern Ireland, what assurances can the Minister give us that not just the UK Government, but the devolved Administrations, will be safeguarded from the investor-state dispute settlement mechanism?

[George Freeman]

The treaty’s provisions apply to the whole United Kingdom, so it will be for the delegated authority of the people of Ulster and their Administration to give effect to the treaty locally.

Ebola

Baroness Ritchie of Downpatrick Excerpts

Monday 13th October 2014 Commons Chamber

[Mr Hunt]

The judgment on how effective we are at identifying higher-risk passengers must be made by the scientists and the doctors involved. Their view is that we are currently going further than we need to given the current risk level, but that it is prudent to do what we are doing because that risk level might increase. I will always listen to their advice.

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

I thank the Secretary of State for his statement on Ebola. Given that one of the busiest air routes within these islands is that between London and Dublin—the hon. Member for North Antrim (Ian Paisley) has already referred to the role of the Republic of Ireland—will he outline what discussions have taken place between him and his officials and the Minister for Health and his officials in the Republic of Ireland?

[Mr Hunt]

The hon. Lady makes an important point. The Under-Secretary of State for Health, my hon. Friend the Member for Battersea, has been in contact with the Northern Ireland Health Minister, and we will pursue discussions with the Republic of Ireland. Although the hon. Lady’s concern is legitimate and it is right that she has asked the question, it is important to say that the current assessment is that the risk level to the UK is low. I would imagine that the risk level in Ireland is similarly low, but that is ultimately a matter for the Irish authorities. At the moment, we are following a precautionary process just in case the risk level increases. We will of course involve colleagues in the Irish Republic in our assessment of those risks.

Mitochondrial Replacement (Public Safety)

Baroness Ritchie of Downpatrick Excerpts

Monday 1st September 2014 Commons Chamber

[Ian Paisley]

Yes, you did. Check Hansard. You said, “You have inflicted this disease on people.”

The debate has got very personal—it has gone into that realm—and people are trying to felon set, to emotionally blackmail, to emotionally charge the debate and to say that people are, to quote another Member, scaring us into opposing this. We must be abundantly clear that such emotional blackmail should be removed from the debate. There should be an honest debate and we should be allowed to discuss the ethics and to put on the table our views, including our moral views.

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

Does the hon. Gentleman agree that the complete lack of evidence on the possible outcomes as these children grow up and have their own children, with females passing on their genetic code to children, means that the technique should not be proceeded with at this stage?

[Ian Paisley]

Some of the pre-clinical tests were completed only in June. It is impossible even to read the detail of them, yet we have a mad rush from some people to proceed. I am not standing in the way of that, but saying that we should do so on the basis of solid, sure and grounded evidence, not emotional blackmail and emotionally charged arguments. The evidence therefore becomes critical. We should be allowed to consider it and we should allow the evidence to emerge post-pre-clinical testing and examination.

There have been two public consultations and I heard one Member dismissing them, saying that all the letters were the same. I can tell the House this: if the letters had all been the same and the majority view had been the other way, the same Member would not have been saying that tonight. He would be saying, “Oh look, the public are with us. The consultation’s there.” The Department of Health consultation is against this proposal and so is the consultation by the HFEA. The ComRes polling moved dramatically between February and August from a wafer-thin majority of 35% of people in favour of the proposal to an overwhelming majority of 55% or so opposed to it. That is a huge landslide.

Honesty should return into the centre of the debate and we should have a full, frank discussion. Let me be clear about my position, as people will ask about the ethical position. I come from a moral stance. I share the psalmist’s view that we are “fearfully and wonderfully made”. We should stand in awe of that and praise the great creator for it, but that should not preclude us from having a proper debate. Other Members have mentioned colleagues or constituents who have had children brought in front of them and I, too, have a constituent who wheeled a little child in front of me. Her words ring in my ears today. Despite all the hurt, all the heartache and all the pressure, tears and anguish for that family, the words of the mother were very clear, “Ian, I would not change this for one moment.”

Oral Answers to Questions

Baroness Ritchie of Downpatrick Excerpts

Tuesday 15th July 2014 Commons Chamber

[Mr Hunt]

The attitude to which my hon. Friend refers is totally unacceptable. It is not specifically an NHS problem; we need to change the way of thinking across our society. In particular, I worry about people with dementia who are sometimes in hospital wards where they are not able to speak up for themselves. That is why we have introduced probably the toughest inspection regime of any hospital system anywhere in the world, and I hope it will make a real difference.

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

In view of the fact that there are currently 10 million people in the UK over 65, and the latest projections are for a further 5.5 million elderly people in 20 years’ time, what plans have the Government made to allocate and prioritise resources for the future care of older people with complex needs?

[Mr Hunt]

The hon. Lady is absolutely right. The figure always in my mind is that by the end of the next Parliament we will have more than 1 million additional over-70s. We need to totally change the way we look after those people, through the single point of contact and a different attitude to continuity of care. One of the things that matters most to those people is the feeling that there is someone in the NHS who knows about their particular needs, their family and their carers. That is the big challenge for the NHS in the next few years.

Organ Transplants

Baroness Ritchie of Downpatrick Excerpts

Tuesday 8th July 2014 Westminster Hall

[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.

Meningitis B Vaccinations

Baroness Ritchie of Downpatrick Excerpts

Monday 7th July 2014 Commons Chamber

[Geoffrey Clifton-Brown]

I am grateful to the hon. Gentleman for his intervention. As I shall discuss later, this is obviously a big and costly undertaking for the NHS. As I am sure the Minister will mention later, there are delicate negotiations to be had, but if we start with babies—preferably babies under the age of 12 months—and then roll it out to students, the whole population will eventually have been vaccinated. Perhaps that will take too long, and once we have vaccinated those cohorts of the population, we might be able to find the money later to vaccinate other cohorts, but let us start, for goodness’ sake. In particular, vaccinating young babies would be an important start.

In my view, and in the view of many others, the Bexsero vaccine should have been rolled out immediately. Doing so could have prevented around 600 cases of meningitis B, and the associated 200 deaths between January 2013 and now. Although there have been delays in rolling out this vaccine on a national scale in the UK, it has been available privately since December 2013 for parents able to pay the high price, and it has been used across several university campuses in the United States. I am sure the House would agree that it is unsatisfactory that where a vaccine has been licensed and is available for use, only those who can afford to pay can get it.

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

I congratulate the hon. Member for The Cotswolds (Geoffrey Clifton-Brown) on achieving this debate on an extremely important subject that impacts on many of our constituents. I have been tabling questions to the Minister about this. Does the hon. Gentleman agree that the most important issue is the time scale for the roll-out of this vaccine? I agree that the important age cohort is infants, and that vaccination should be rolled out to other age groups later.

[Geoffrey Clifton-Brown]

I thank the hon. Lady for her intervention. The key thing that we want to hear from the Minister tonight is an honest assessment of when the roll-out of the vaccine is likely to happen. That information will be particularly important to parents of young babies.

Within the announcement that there would be vaccine as part of childhood immunisation, the Department for Health stated that the Bexsero vaccine would be made available—I quote from a letter dated 25 April 2014 to me from the Minister—

“subject to it being made available by the manufacturer at a cost-effective price”.

That is the crunch point, as that will be a very large cost to the national health service, and the Minister needs to negotiate a good low price so that immunisation does not become prohibitively expensive. If anyone would like to see a copy of that letter, they should email me at [e-mail] and I will willingly send them a copy. I am told that I am not allowed to deposit it in the Library, otherwise I would do so.

There are three things that I would like to ask the Minister to do. First, what does her Department consider to be a “cost-effective price” for something that will save many lives in the future? Surely it is impossible to put a monetary value on young lives. I urge her not to base her decision solely on how much the vaccine will cost, but to look at the hugely positive effects that implementing a vaccine will have, especially when one considers the trauma that parents have to go through and the devastating pain of losing a young child suddenly within 24 hours. Indeed, there are large costs associated with not vaccinating, as it is estimated that every case of MenB which leads to a severe disability will cost the Government £2 million to £3 million during the life of that child.

Secondly, the announcement made in March confirmed that the vaccine would be introduced only for infants at two months old, with a limited catch-up period for babies up to four months. Given that, as I said earlier, cases peak at around five or six months and the illness remains most common in babies under one year, I urge the Minister to consider implementing the vaccine for all infants under one year old at the time of introduction, to ensure that we protect as many babies as possible. In her response tonight could the Minister inform me of the difference in cost between providing the vaccine for all two-month-old babies, with a catch-up for all four-month-old babies at the time of introducing the vaccine, and the cost of providing it for all 12-month-old infants? I appreciate that she might not have those figures this evening. If she does not know the figures, I would be grateful if she would undertake a cost-benefit analysis of vaccinating all 12-month-old babies and let me have the figures. That would be helpful.

Thirdly, as I said earlier, there is another peak of individuals contracting meningitis B during late adolescence, as my constituent’s granddaughter sadly did. At university, people’s lifestyle is totally different; they mix and get different germs, and unfortunately that seems to mean that they are more susceptible to this dreadful meningitis B. There is therefore a strong case for a roll-out of Bexsero to university students to prevent the spread among that age group. As I have said, some campuses in the US have already administered the vaccine to stop outbreaks of meningitis across the student body. When evaluating the costings, will the Minister please embark on a cost-benefit analysis of providing the vaccine to all 18-year-olds in full-time education?

The Joint Committee on Vaccination and Immunisation has recommended a study to inform its decision on whether to recommend a vaccine for adolescents as the second most at-risk group of people. In her letter to me of 25 April, the Minister told me that the Department is

“considering how best to proceed with this”.

I urge her to instigate the study as soon as possible to prevent any further delays. Once it has been decided how to develop the study, people must be recruited to it as soon as possible, and once the results are available, they should be presented to the JCVI without delay, so that a recommendation can be made quickly. Only with speedy action and decisions can we prevent any more unnecessary deaths and suffering as a result of meningitis B in this group.

I would like to end where I started. Thousands of families suffer from the devastating effects of meningitis B, but we now have a preventive vaccine, which is fantastic news. The vaccine has been licensed for 18 months without being rolled out by the NHS. That delay has had a devastating effect on families of individuals who have contracted the infection and died or become seriously disabled. Now that the JCVI has given a positive recommendation for roll-out of the vaccine, that should happen swiftly. I urge the Minister to conclude rapid negotiations with Novartis. I ask the drug company to enter those negotiations with the Government in a spirit of good will, so that we can get this vaccine rolled out as quickly as possible. I also urge the Minister to consider expanding the current proposal of vaccination to include children up to one year old and adolescents, so that we cover all high-risk groups.

It is now possible to prevent further tragedies similar to that of Emily and thousands of others. We have experienced too many delays already. Let us end those delays, make quick progress, and find ourselves in a situation in which parents are confident that their child will be safe from the devastating effects of this dreadful infection. Every day’s delay is a potential life lost. Please will the Minister act as quickly as she can?

Oral Answers to Questions

Baroness Ritchie of Downpatrick Excerpts

Tuesday 10th June 2014 Commons Chamber

[Jane Ellison]

We all appreciate the wonderful work done by cancer charities such as Macmillan Cancer Support and Cancer Research UK, and the Department works closely with those charities. We want outcomes for cancer patients in England to be among the best in Europe. As I said, we know we are not there yet, but a great deal of effort and money is going into getting there. The NHS is treating more cancer patients than ever. Since 2009, we have seen numbers rise by 15%—that is 1,000 more patients with suspected cancer referred to a specialist every day. That is the success of some of the early diagnosis and awareness raising activity. Of course we want any local dips in performance to be addressed, but let us give credit where it is due to clinicians who are diagnosing more cancers and catching them earlier, because that is the key to treating cancer successfully.

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

5. If he will meet the chair of the College of Emergency Medicine to discuss A and E units.

[The Secretary of State for Health (Mr Jeremy Hunt)]

I met the chair of the College of Emergency Medicine four times in the last six months and I will meet him again next week.

[Ms Ritchie]

I thank the Secretary of State for his answer. Will he tell the House what progress has been made by Health Education England, along with the College of Emergency Medicine, to recruit trainee doctors from India in an attempt to address the serious staffing shortages in emergency medicines departments? Will he work with Ministers from other devolved regions to address the serious shortage in A and E doctors, which is having an impact on waiting lists in hospitals the length and breadth of the UK?

[Mr Hunt]

The hon. Lady is right that operational pressures on A and E are happening throughout the United Kingdom. We have made good progress in recruiting 50 A and E doctors to help relieve pressure this year in A and E departments, but that is a short-term measure. The long-term issue is to get more doctors going into A and E from training, and we are looking at contract structures and at what we can do with training schedules to make that more attractive. We will certainly work with colleagues in devolved Administrations and tell them what we have learned.

Oral Answers to Questions

Baroness Ritchie of Downpatrick Excerpts

Tuesday 25th February 2014 Commons Chamber

[Mr Hunt]

My hon. Friend is absolutely right. I encourage those on the Opposition Front Bench in particular to talk to a few people in A and E and ask whether they think they have been supportive, in a very difficult winter, by whipping up all these scare stories when, in fact, because of their hard work, we are seeing 2,000 more people every single day in less than four hours than when the shadow Secretary of State was Health Secretary. A and E is performing better than ever.

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

T5. There are nearly 500 UK-trained medical practitioners now working in Australia, of whom 6% never return owing to the better conditions available there. What steps will the Secretary of State and his ministerial team take to ensure that we retain those qualifying in emergency medicine this year, to keep local A and E departments open in Britain and Northern Ireland?

[The Parliamentary Under-Secretary of State for Health (Dr Daniel Poulter)]

I would like to point out to the hon. Lady that it is not unusual for doctors in training to work overseas to improve their medical experience. Many of my contemporaries did that, and every one I know has returned to work in the NHS in the UK. It is a common phenomenon that benefits doctors’ experience. What we have done, unlike the previous Government, is ensure that we now have a 100% fill rate for people entering A and E common stem training.