Drugs (Ultra-rare Diseases)

Kerry McCarthy Excerpts

Tuesday 20th January 2015 Westminster Hall

[Greg Mulholland]

Absolutely. It is critical that we all work together on this issue. Indeed, I would like to hear from the MPs for all these families across the country so that we can have one voice to say to NHS England and the Minister, who has been very helpful, that we need a solution and that we need to hear some news by the end of January.

NHS England is now consulting on a new process, and it has said that it will take 90 days. That may seem a reasonable time to come up with a process, but considering that the old process was flawed, there needs to be something to fill the gap that enables all these children to access the drugs now. At the moment, the drugs in this case are being supplied through the good will of the drug companies: BioMarin in the case of Vimizim and PTC in the case of Translarna. Both companies are engaged in the process, both have a part to play and both are involved in dialogue with the Minister and NHS England.

I will briefly explain the two conditions so that people understand. Morquio is caused by the lack of an enzyme needed to break down certain chains of sugar molecules used in building bones, cartilage, tendons and other bodily tissues. Those unbroken molecules are stored in parts of cells called lysosomes, which become swollen, disrupt cell functions and cause progressive damage. Babies with the syndrome grow normally, but growth slows significantly after 18 months. Those severely affected stop growing at about age eight, and their final height may be three or four feet, which has many effects on their quality of life. There is no cure for Morquio, but the enzyme replacement therapy Vimizim, for which clinical trials are ongoing at the moment, has been shown to be effective. As we have said, any delay with the drug will cause damage that cannot then be reversed.

[Kerry McCarthy (Bristol East) (Lab)]

Before I came in, I was speaking to my hon. Friend the Member for Alyn and Deeside (Mark Tami), who would have liked to be here but who has a meeting and sends his apologies. When reading the testimonies from the MPS Society UK, I was struck by how significant a difference the drug makes to children’s energy levels. Obviously, clinical trials and other formal assessments are important, but the personal testimonies from the families about the changes that they have seen in the children and how much energy the drug gives them are far more compelling than any scientific assessment could be. Does the hon. Gentleman agree that listening to the families is important?

[Greg Mulholland]

It is crucial, but that also tallies with the medical evidence. It has been shown that that particular treatment stabilises symptoms, slows deterioration and has a hugely positive impact on quality of life. Children can do more and lead more normal lives; they have more energy and stamina. People with Morquio can live full lives and go on to education and employment, but childhood is their only opportunity to take a drug to slow the effects of the disease.

Duchenne muscular dystrophy, also caused by a mutation, affects young boys specifically. It also has no cure and gets worse over time. It begins by affecting a particular group of muscles and then muscles more widely, leading to difficulty walking, running, jumping, standing up and climbing stairs. Children with Duchenne muscular dystrophy may end up in a wheelchair fairly young, and are certainly predicted to become wheelchair-bound between the ages of eight and 14 as their muscles weaken and they lose their ability to walk.

NHS Specialised Services

Kerry McCarthy Excerpts

Thursday 15th January 2015 Westminster Hall

[Kerry McCarthy (Bristol East) (Lab)]

I congratulate you on your knighthood, Sir David, and I also congratulate you on West Ham’s success. I tend to follow West Ham, as my little nephew, Oliver, is a great fan, but as I gather you are next up against Bristol City, I am afraid that this is one occasion when I am not allowed to express support.

I am pleased to follow my colleagues in speaking on this issue. I know that my hon. Friend the Member for Blaydon (Mr Anderson) has had to leave for the debate in the main Chamber, but I want to mention briefly the Muscular Dystrophy Campaign. It has spoken to me many times about the need for the national commissioning of specialised services, so it is obviously concerned that that may be under threat. I have a constituent with Duchenne muscular dystrophy, so I am pleased that my hon. Friend brought up the issue of access to Translarna.

I was in the Chamber for the start of the debate on contaminated blood. We heard some very sad stories about haemophiliacs contracting hepatitis C and HIV/AIDS as a result of receiving infected blood. Haemophiliacs are another group who benefit from these services, as indeed do people with HIV/AIDS.

I particularly want to raise some points today on behalf of the Cystic Fibrosis Trust, which, as the Minister will know, does excellent work. It has already been mentioned by the hon. Member for Colchester (Sir Bob Russell). Cystic fibrosis is not among the rarest of conditions; it is actually the most common life-threatening, inherited disease and affects over 10,000 people in the UK. However, it is very complex, and because of the associated conditions that go with it, it requires very much a co-ordinated holistic approach. Patient care includes physiotherapy, nutrition, antibiotics and, often, a long wait on the lung transplant list, which is something that I have raised in the Commons before.

Cystic fibrosis patients need a dedicated team of specialist consultants, nurses, dieticians, physiotherapists, pharmacists, social workers and psychologists. Their susceptibility to cross-infection also means that they need to avoid other cystic fibrosis patients, so it is particularly difficult to provide services for them. I have spoken before about how invaluable it is for cystic fibrosis patients to have a dedicated service, and we are very fortunate in Bristol to have the Bristol Adult Cystic Fibrosis Centre, and also a special paediatric unit at Bristol children’s hospital. In recognition of the different needs of patient groups at different ages, NHS England has two service specifications for CF—one for adults and one for children to ensure that the services meet their needs.

I want to talk briefly about the concerns that the Cystic Fibrosis Trust raised with me about the consequences of co-commissioning. Specialised services, such as Bristol’s, are becoming increasingly important as the life expectancy for people with CF increases and as patient numbers expand. It used to be very much a childhood illness, which is why the issue of people with cystic fibrosis having to pay prescription charges is an anomaly. It used to be that they did not survive into adulthood, so the issue of paying prescription charges did not come up, whereas now, their life expectancy is much longer, although it is still very much a serious illness.

When I visited Bristol Royal infirmary to look at its unit last year, it was clear that capacity and managing its bed allocation was becoming a bigger problem because there are more patients around. Arguably, that means that specialised commissioning will become increasingly important. The Cystic Fibrosis Trust is concerned that a move towards co-commissioning, rather than expanding the availability of specialised units, will be a retrograde step for the care and treatment of CF. Given the proposal to incentivise CCGs to reduce spending on specialised services, the trust is concerned that a move to co-commissioning is

“a veiled attempt at cost-cutting”.

The Cystic Fibrosis Trust argues that the current arrangements have delivered economies of scale through the focus on fewer, larger units; that they facilitate clear accountability in commissioning; and that they provide, together with the clinical reference group, the potential for continuous improvement and innovation. They also ensure consistency and equity of access across the country, something that again, is very much missing from the organ transplant system, and the trust has been campaigning for some time for a national lung transplant allocation system. It has also been highlighting the issue of national access to drug therapy, which will become increasingly important if, as we hope, new drugs are developed. The trust warns that, without the necessary national approach, we will see worrying postcode lotteries, and that

“overstretched clinical commissioning groups may not be able to support the level of service required in specialist centres, complete with integrated patient pathways and multidisciplinary expertise.”

I want to end by asking the Minister a number of questions. He may not be able to reply to them today, but I would be grateful if he could pick them up in writing. Given that CF care is provided by a single, multidisciplinary team, funded by a year-of-care tariff, what would co-commissioning look like for cystic fibrosis services? Just how will co-commissioning work for a condition such as CF without undermining the key principles of the existing nationally commissioned service—avoidance of duplication, the consistent standard of care and facilities across the country, and a joined-up approach to future treatments? If cystic fibrosis is co-commissioned, what aspects of the service would be commissioned nationally and which would be commissioned locally? Is the Minister at all concerned that local CCGs may not have the expertise to commission aspects of care for a condition as complex as cystic fibrosis?

To conclude, given the vulnerability of patients who currently rely on specialised commissioning, I hope that the Minister will work with organisations such as the Cystic Fibrosis Trust and other members of the Specialised Healthcare Alliance, and give due consideration to their call to maintain mandatory national service standards.

--- Later in debate ---

[Mark Tami]

I agree, and that is a fact that few people know. A white person has a 70% to 80% chance of finding a match. For some ethnic groups, the chance of finding a match can be as low as 30%. For those of mixed race, depending on what that mix is, it can be even worse. We need to do much more work in those areas to try to explain that. It is the same with giving blood, where there is also a problem. The two are connected, but there is a big problem there, and we need to do a lot of work on it. Transplants are also being used for sickle cell disease, which is an important area that has already been mentioned.

Many of the graft-versus-host issues appear during the early days, but that is not always the case. Flare-ups can happen many years later. Hopefully they will become less severe as time goes on, but we cannot say that they will stop at a particular time—100 days or any other arbitrary figure. GVH is not the only problem; most transplant patients will contract a series of infections due to their immune system being compromised as a result of the treatment they have to receive to ensure that the transplant is in the best position to take. Those infections might not prove particularly dangerous to the rest of us, but they could prove fatal to a transplant patient. In the longer term, secondary cancers are another issue that has to be faced. However, without the transplant these patients would not be alive even to think about such issues, so we always need to put matters into proportion.

We have talked a lot about the physical impact of a transplant, but the psychological effects are often ignored, and there is perhaps a lack of support. Transplants are a difficult process, particularly for children. My son was in hospital, off and on, for two years, which is a big chunk of a nine-year-old’s life. Even for adults, transplants are a major step. We need to do a lot more to address the psychological effects by providing better counselling. Some support is provided in hospitals, and I have experience of that, but once people leave hospital they have to search long and hard to get support. It is a fact that transplant patients have a higher rate of suicide than the rest of the public.

[Kerry McCarthy]

I visited the cystic fibrosis unit at Bristol, and one of the key problems for people from remoter, rural areas is accessing the ongoing support, or even the drugs, that they need. In the cities there may be a concentration of patients with the same illness or a unit that specialises in treating it, and one of my concerns about co-commissioning is that a CF patient somewhere in Devon or Cornwall will have very few other patients nearby. The problems that such patients already have with being remote from the hospitals that treat them will be exacerbated if there is a local element.

[Mark Tami]

I totally agree. Thankfully, not many people have these conditions, so particularly in rural areas, someone might be the only person with the condition, and accessing support may be much more difficult.

After the 100-day cut off it becomes far more problematic for both the patient and the health provider. The term “postcode lottery” has been mentioned a lot today, and it is certainly the case when accessing support. After such a traumatic procedure, a postcode lottery is the last thing that people need. We must move away from the arbitrary 100 days, which does not fit what the patient actually needs. We need a more flexible approach that focuses on the patient, rather than just some figure that we seem to think may or may not cover the majority of people.

Support should go arm in arm with a proper transplant pathway that addresses how we look after transplant patients after those 100 days, or whatever figure is used, for as long as necessary. I have always been struck by the fact that we spend a vast sum on each transplant on the medical and hospital side, probably hundreds of thousands of pounds by the time we finish, but when the patient leaves that environment, the level of support is very poor. We need a more joined-up approach, particularly for children. A few years ago I spoke in an Adjournment debate in the House on support for children who have had cancer and are returning to the school environment. I was shocked that there are no national guidelines on how we reintroduce children. It is a scary, traumatic process not only for them but for their classmates, particularly if they are very young. Their classmates might suddenly see a child they have not seen for a while looking very different. Some schools are very good and some are absolutely hopeless in the support that they give. I am going slightly off the subject but the Department of Health and the Department for Education must work together, rather than arguing about who is responsible for providing such support.

My last point concerns patients who have had a transplant but unfortunately have relapsed. A transplant is not an easy option, and it is traumatic enough, but when the transplant fails, perhaps a year or two down the road, the patient is faced with a bleak outcome unless another transplant is available. Indeed, when a transplant is first performed, a proportion of the cells will be kept to have another go, if I can put it in those terms, in the event of such an outcome. That will obviously apply only to a limited number of people, but for that limited number of people it is their only hope. In the past we have seen that a second transplant tends to go ahead because the number of people affected is not particularly vast, but in England a second transplant now has to be provided by the NHS England individual funding request process. I understand that in recent months a number of those requests have been declined. I also believe that NHS England does not intend to address the issue until April 2015 at the earliest, although it recognises that there is an issue. When it does, I do not know how long it will take to decide what to do or, indeed, what the outcome will be. That is unacceptable. It is not too dramatic to say that lives are being lost because of that delay and this unnecessary process.

Contaminated Blood

Kerry McCarthy Excerpts

Thursday 15th January 2015 Commons Chamber

[Diana Johnson (Kingston upon Hull North) (Lab)]

May I start by thanking the right hon. Member for North East Bedfordshire (Alistair Burt) for securing this debate and for all his incredibly hard work over the past year or so in championing this cause? I also thank him for his kind remarks about the late Paul Goggins, the late Jim Dobbin and the late Lord Morris.

I co-chair, along with the hon. Member for Colne Valley (Jason McCartney), the all-party group on haemophilia and contaminated blood, and it has been a privilege to be involved in putting together the report. I think I speak for both of us when I say that many of the contributions made by the nearly 1,000 people who gave evidence to the APPG were harrowing and at times very moving. The substantive report would simply not have been possible without those submissions. They are quoted throughout the report and highlight in vivid detail how the current system of support is not fit for purpose. Our report is clear that there needs to be dramatic change to the level of support people get, and the way in which it is managed, before we can even hope to achieve closure for these people. Needless to say, my biggest thanks go out to the whole community of people who have been affected by this tragedy.

In addition, I thank YouGov and the hon. Member for Stratford-on-Avon (Nadhim Zahawi), who generously helped put together the survey; the Haemophilia Society, which provides the all-party group’s secretariat, and particularly its chief executive, Liz Carroll, without whose help we could not have conducted the inquiry or produced and printed the report; and Fiona McAndrew and Thomas Stephens, who both worked so hard to put the report together. I am also pleased that my right hon. Friend the Member for Leigh (Andy Burnham) is on the Labour Front Bench, and that the Secretary of State for Health and his Minister, who has direct responsibility for this area, are also present.

I want to highlight two matters. First, I want to clarify the issue about the number of people infected with hepatitis C. Since we concluded our inquiry, several people have got in touch about the figures. We state at the beginning of the report that, historically, it was estimated that more than 30,000 people were infected with the virus during the relevant period, and the figure was given in the Government’s 2011 review of support for those affected. Figures for the numbers affected by haemophilia derive from the United Kingdom Haemophilia Centre Doctors Organisation, and those for the number of people without bleeding disorders who are infected are estimates from an academic study.

I want to make it clear that no support package would extend to anywhere near such a number, because many of those originally infected have—unfortunately and sadly—died, while some cleared hepatitis C at the acute stage and others, especially those infected through a blood transfusion, would find it very difficult to link their hepatitis C infection with a single period of NHS treatment and so could never qualify for help in practice. It would be a shame if any Government used such a figure to argue that it is too costly to expand support. In practice, trust-based assistance would cover only a much smaller number of people—fewer than 6,000—and any consideration of the costs of extending the support package should take that into account.

Secondly, I want to highlight the case of my constituent Glenn Wilkinson, who was infected with hepatitis C from NHS-supplied blood products. Without Glenn, I would never have become involved in the all-party group. He is a resolute and determined activist, and he has campaigned vigorously for more support for those affected. We all owe him a huge debt of gratitude for keeping on going, and for fighting for what is right.

As a minimum, Glenn would like a number of measures taken to reach a full and final settlement for all. I will set out what he has told me in the past few days and how it fits with what we said in the report. First, he wants to remove the distinction between stage 1 and stage 2 hepatitis C, because the majority of people in stage 1 do not receive ongoing payments. The distinction is based on a decision that those in stage 1 are not in a state of ongoing need, but our inquiry clearly showed that they are in need. The accounts we received show that the Government need to rethink the current system, which denies ongoing support to those in stage 1. We therefore recommend that the Government provide ongoing payments to all people with stage 1 hepatitis C at a level to be set by a public health doctor.

Secondly, Glenn wants all widows and family members of deceased infectees to have equal access to financial support, irrespective of the infection that caused the virus. We recommend that all widows of hepatitis C infectees, who are currently denied any ongoing support, get the same support as those of HIV infectees. We also recommend that the families of deceased hepatitis C infectees should get the same support for at least nine months after the primary beneficiary dies, as is already the case for those with HIV. Thirdly, Glenn wants the support to be simplified and administered by just one trust, rather than by the five trusts that currently exist. Our report recommends that the Government review the support provided, because it is a mishmash and a hotch-potch.

[Kerry McCarthy (Bristol East) (Lab)]

I congratulate my hon. Friend and other Members involved in producing this excellent report. One of my constituents affected, Councillor Bill Payne, has praised the report. On her point about the piecemeal nature of the support available, I must say that I was really struck by that when I read the report. It is difficult enough to deal with the health care system and the welfare system without the additional burden of bureaucracy, and it seems that some of the organisations involved are not very good at responding to people’s needs, so I agree that that needs to be addressed urgently.

[Diana Johnson]

I am grateful for that intervention. I think I should be allocated an additional minute that has not been put on the clock. [Interruption.] Thank you, Madam Deputy Speaker.

Fourthly, Glenn told me that he thinks it would be fair to see priority access to NHS treatments for those affected, and that is rightly one of our recommendations. He also wants automatic passporting to employment and support allowance and disability benefits for all infectees. Because this is an all-party group, that recommendation is not included in the report, but I think it should be considered by the Government. Just today I received a message from someone who said that the money they get from one of the trusts is now being spent on paying the bedroom tax—I am sure the Minister does not think that that is what trust money should be used for. Once the Penrose inquiry is published, we hope there will be no further delays, or that any delays will be minimised in any inquiries that the Department of Health and Government need to make.

I will end with a quote from a person I think was very brave to come forward. She is an HIV infectee and the widow of an HIV-infected husband:

“I refuse to be a victim. Despite everything I cherish my life and count my blessings. I have faith that this will end soon and maybe then, my talents, intelligence, spirit, sense of justice, experience and energies can be better directed at contributing towards and being part of a better society. I pray for the day when this Trust is out of my life. I do not think that is much to ask.”

Oral Answers to Questions

Kerry McCarthy Excerpts

Tuesday 13th January 2015 Commons Chamber

[Kerry McCarthy (Bristol East) (Lab)]

T10. At Southmead hospital in Bristol, just 81% of patients are seen within four hours and the number of blocked beds is three times the national average. At Bristol Royal infirmary it is double the national average. What is the Secretary of State doing specifically to help hospitals in the Bristol area?

[Mr Hunt]

We have allocated £8.84 million to South Gloucestershire’s strategic resilience group, and that is employing more doctors, nurses and hospital and community staff, and providing more than 100 beds.

A and E (Major Incidents)

Kerry McCarthy Excerpts

Wednesday 7th January 2015 Commons Chamber

[Mr Hunt]

That is exactly the kind of scaremongering, frankly, that is incredibly demoralising for those who are on the NHS front line right now. I urge Labour Members to think before they start doing things that make a difficult situation even worse.

[Kerry McCarthy (Bristol East) (Lab)]

The South Western ambulance service came close to declaring a major incident on 27 December, and local hospitals warned of unprecedented demand last weekend. What is the Secretary of State doing specifically to help hospitals and the ambulance service in the Bristol and Avon area to survive the winter?

[Mr Hunt]

As I mentioned earlier, I have talked to the chief executive of South Western ambulance service about the particular pressures it has faced, such as the 25% increase in 999 calls. We are doing a lot of things, including helping to recruit more paramedics. We have 40 more paramedics starting for the London ambulance service this month, and we are doing what we can to help the South Western ambulance service as well.

A and E and Ambulance Services

Kerry McCarthy Excerpts

Thursday 18th December 2014 Commons Chamber

[Mr Hunt]

I do. I thank my hon. Friend for going out with his local ambulance service. Indeed, I want to thank the many Members on both sides of the House who go out and see what is happening on the NHS front line. The problem that my hon. Friend raises is exactly the kind of problem we are trying to address. I do not want to pretend that all these problems can be addressed this winter. Part of the issue is that the quickest way to see a doctor is to go to A and E, where the average waiting time to see a doctor is only half an hour across the country. That is the fastest time anywhere in the world. We need to find better out-of-hospital alternatives, and better alternatives to calling an ambulance, if we are to reduce the pressure on the emergency services.

[Kerry McCarthy (Bristol East) (Lab)]

It was reported recently that Bristol’s Southmead hospital was the third worst performing hospital in the country on emergency targets, with only 84% of cases seen within four hours. NHS England temporarily withheld £1.35 million to cope with extra winter demand while a believable improvement plan was produced. Clearly, 84% is nowhere near acceptable, particularly as we approach winter. What can the Department of Health do to ensure that Southmead hospital improves its performance?

[Mr Hunt]

We are doing a number of things. I have spoken to people in the Bristol area about what we need to do to improve the situation there and I assure the hon. Lady that we are focusing on it. It is partly why we are putting in £700 million this year to help hospitals to cope with those pressures. We have a brand-new hospital in Bristol as well, and it has had some teething problems, but I am confident that the staff there are working incredibly hard to turn the situation around.

Oral Answers to Questions

Kerry McCarthy Excerpts

Tuesday 25th November 2014 Commons Chamber

[Norman Lamb]

I am delighted that my right hon. Friend has become chair of the all-party parliamentary group on autism. She has fought for many years to secure a fair deal for people with autism. I am grateful to her for alerting me to the issue that she has raised, and I shall be sure to look at the guidance. It is absolutely not the intention to water down guidance for local authorities in any way.

[Kerry McCarthy (Bristol East) (Lab)]

2. What recent assessment he has made of the adequacy of provision of student health services.

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

All patients are eligible to register with local primary medical care services, and that includes students who are moving away from home and starting university.

[Kerry McCarthy]

I do not think that the Minister has entirely engaged with the question. Those who run the student health services at Bristol university are warning that young people’s health is very much overlooked and underfunded—particularly mental health, which accounts for a quarter of all consultations. They are being hit by the GP funding changes and by cuts in public health spending on sexual health advice, and they have had to introduce their own meningitis vaccination programme because the Government have not introduced one. What support can the Minister give specifically to student health services?

[Dr Poulter]

I certainly remember being actively encouraged to register with a local GP when I was a student at Bristol university, and I understand that that continues today. As for the important question of children’s and young people’s mental health, the children’s mental health and well-being taskforce is looking at the mental health and well-being of students. Student Minds is involved in the process, and that in particular will help to inform the work of the taskforce in improving access to students with mental ill health.

Oral Answers to Questions

Kerry McCarthy Excerpts

Tuesday 15th July 2014 Commons Chamber

[Norman Lamb]

I can confirm, as I already have done, that there is no truth in the rumour. Indeed, in August we anticipate publishing the start of trial programmes to bring together IAPT—improving access to psychological therapies—with Jobcentre Plus. The idea of ensuring that people who are out of work and have mental health problems get access to psychological therapies is incredibly important, and I am very excited about the pilots that we will launch in August.

[Kerry McCarthy (Bristol East) (Lab)]

10. What assessment he has made of the effects of trends in food prices on public health.

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

The Government monitor trends in food prices. We are obviously aware that for some families money is tight, but that is one of the reasons why in my area—public health—we are investing in programmes such as Change4Life. Public Health England has done a great job with Change4Life. Since its launch, more than 1.9 million families have joined, and the Meal Mixer app, for example, has been downloaded more than 1 million times and contains hundreds of quick, healthy and affordable family recipes.

[Kerry McCarthy]

I thank the Minister for that response. Some of the things that she mentioned involve people being in a position to make choices about the food that they buy, and we know the extent of food poverty is such that many people do not have the luxury of being able to do that. Is the Minister aware of the Trussell Trust and Oxfam report, which warns that people in food poverty are buying lower quality food and less food overall, giving rise to a real problem of malnutrition in children?

[Jane Ellison]

I am sure that, like me, the hon. Lady welcomes the news this morning that food price inflation is at an annual rate of 0%, so food prices are at the same level as last year. On the issue that she raises, that is exactly why programmes such as Change4Life are important. It is also important that we see other measures across government. The school food plan is important for its emphasis on nutrition, as are free school meals and the Healthy Start programme. The Government are doing lots of things to try to make it easier for less well-off families to eat healthily.

Organ Transplants

Kerry McCarthy Excerpts

Tuesday 8th July 2014 Westminster Hall

[Kerry McCarthy (Bristol East) (Lab)]

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

[Jason McCartney (Colne Valley) (Con)]

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

[Kerry McCarthy]

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

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

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

Oral Answers to Questions

Kerry McCarthy Excerpts

Tuesday 10th June 2014 Commons Chamber

[Norman Lamb]

I mentioned earlier that when the last Labour Government introduced the 18-week waiting time standard they left out mental health. That is at the heart of the problem. We are committed to changing that and to introducing access standards in mental health, and we plan to start next year.

[Kerry McCarthy (Bristol East) (Lab)]

The Stitch project in Bristol has contacted me with concerns about the number of overdoses by people on prescription medication and suggested that allowing medication to be dispensed in instalments would be a better way of handling those vulnerable patients. I was disappointed in the response that I got from the Department, and I urge the Minister to think again on this issue.

[Dr Poulter]

I am very happy to meet the hon. Lady to discuss this further and see what we can do because it is important that the vulnerable patient groups she highlighted are looked after in the right way.