Mental Health and NHS Performance

Kerry McCarthy Excerpts

Monday 9th January 2017 Commons Chamber

[Mr Hunt]

My hon. Friend is absolutely right to mention that. We can approach this area with some optimism about the potential for change. If she looks at our progress on dementia over the past four years, she will see that not a day goes past without something in the newspapers about dementia. The understanding of dementia has changed dramatically. We can change attitudes, and we absolutely need to do so because the only way to get help to people in mental health crisis is if they talk about it openly. That is a vital thing to change.

[Kerry McCarthy (Bristol East) (Lab)]

I entirely agree with the comments about the pressures on GP services, preventive health and social care, but I particularly want to ask about mental health services for students. There were three suspected suicides in the first few weeks of term this year at Bristol University, and I know from speaking to Dr Dominique Thompson, who runs the student health services there, that the number of students presenting with mental health issues has grown exponentially over recent years. What can the Secretary of State say to reassure us that students leaving home for the first time to go to university will be in safe hands?

[Mr Hunt]

I had an interesting afternoon visiting the suicide prevention unit at Bristol Royal infirmary, where I had a good discussion about its pioneering work. I learned a great deal from that visit. We have a particular concern about the very significant growth in mental ill health among women aged 18 to 24. Today, the Prime Minister announced that we have updated the suicide prevention strategy to make sure that all parts of the country can learn from best practice, including places like Bristol.

Oral Answers to Questions

Kerry McCarthy Excerpts

Tuesday 20th December 2016 Commons Chamber

[Mr Dunne]

As my hon. Friend has confirmed, 44 areas are working on their STPs, all of which are charged with looking at improving integration between hospitals and social care in order to improve discharge. In order for STPs to be taken forward, they have to address that issue.

[Kerry McCarthy (Bristol East) (Lab)]

Recent figures from the Royal College of Psychiatrists show that children and adolescent mental health services are still underfunded in many parts of the country—particularly worrying for me is the fact that Bristol seems to be the 13th lowest in the country. What are Ministers doing to ensure that children across England and the rest of the UK get the health services that they need?

[Mr Jeremy Hunt]

The hon. Lady is right to highlight this issue and I agree with her. I am not happy with the service that we provide through CAMHS at the moment. It is a big area of focus for the Government. We are putting a lot of investment in, but there is lots more to be done.

Accelerated Access Review

Kerry McCarthy Excerpts

Tuesday 13th December 2016 Westminster Hall

[Kerry McCarthy (Bristol East) (Lab)]

It is a pleasure, as ever, to see you in the Chair, Sir Alan. I thank the Backbench Business Committee for granting us this debate. I also thank the Cystic Fibrosis Trust, which has not just been instrumental in getting MPs here today, but does great work, as my hon. Friend the Member for Dudley North (Ian Austin) said, in supporting people with cystic fibrosis and their families. I think that Ed Owen is now moving on to other things and I particularly pay tribute to him for his work.

As I have mentioned before in this place, I have a 12-year-old niece, Maisie, who was diagnosed at Christmas in 2004 as one of the 10,500 people in the UK with cystic fibrosis. Thankfully, she is doing very well. In recent weeks, the number of constituents who have contacted me whose children, grandchildren or friends’ children have cystic fibrosis has been revealing to me. Sadly, I also have constituents whose children have died from the condition. The youngest cystic fibrosis patient I have been contacted about was born in April this year. I have also been contacted by a couple of people who have 19-year-olds who are both at university, and the issue of prescription charges mentioned by my hon. Friend the Member for Dudley North has particularly hit home. One constituent said that, although she was very proud that her son had now gone to university hundreds of miles away, he was now responsible for managing his condition, which created some anxieties for her. She said that he was very angry that, despite being classed as a disabled student, he had to pay for his prescription. I hope that the Minister takes that on board because we have been promised a review of exemptions for many years.

As we have heard, Kalydeco, the drug that treats one particular mutation of cystic fibrosis, helps about 4% of patients in the UK. It was approved back in 2013 and the results have been dramatic, increasing lung function and reducing the time people have to spend in hospital on intravenous antibiotics. It has made a huge difference to patients’ quality of life and all the signs indicate that it could significantly improve life expectancy. Now we have Orkambi, which is a combination of the drug that is marketed as Kalydeco and another drug. Orkambi targets a different mutation that affects more than 4,000 people, so it could help almost half the CF population in the country.

The clinical studies that became available last year indicated a significant reduction of 30% to 39% in lung infections and inflammations that lead to irreversible lung scarring and the need for a lung transplant. One in three patients who need a double lung transplant because of cystic fibrosis die while they are still on the waiting list. I hope that organ donation is also on the Minister’s radar. Orkambi could be absolutely life-transforming. Despite that, NICE rejected it back in June because of doubts about its cost-effectiveness. It recognised that the drug is potentially a “valuable new therapy” with “significant clinical benefits”, but it concluded that the cost per “quality-adjusted life year” is too high.

I acknowledge that NICE has a difficult job in assessing all the potential treatments for a range of conditions, and that it operates on a tight budget, but, as the Cystic Fibrosis Trust has argued and as we have heard this morning, the processes that NICE uses can be flawed because they rely on short-term data for a lifelong condition. We heard from my right hon. Friend the Member for Leigh (Andy Burnham) that new data show that after 96 weeks of treatment—NICE only looked at the 24-week clinical trials—the decline in lung function, which is the main cause of death for people with cystic fibrosis, slows by 42%. If NICE had had that data, it would have rated Orkambi’s cost-effectiveness much higher.

I am partly speaking from personal experience, but I also know from my constituents’ very sad stories that people are desperate for something to address these problems. The accelerated access review was commissioned because the Government recognised the weaknesses in the NICE process. For patients whose life depends on the outcome of the report and its implementation, it has been a long wait. I urge the Minister not to delay any longer and to consider the Cystic Fibrosis Trust’s request to apply the AAR recommendations to the deadlocked Orkambi negotiations. Confidential commercial agreements would free Vertex to make the NHS its best offer, and commercial agreements under the Cancer Drugs Fund are confidential. Flexible pricing arrangements would allow the consideration of alternative models to manage costs, such as a price cap that is not exceeded even if patient numbers rise, and the collection of real-world data would allow a more accurate assessment of the drug’s effectiveness. The hon. Member for Bury St Edmunds (Jo Churchill), who has now left the Chamber, mentioned the fact that 99% of cystic fibrosis patients are on the database and that there is a lot of available information about them, which makes them ideal to pilot the scheme. I hope that the Minister considers that.

Social Care Funding

Kerry McCarthy Excerpts

Monday 12th December 2016 Commons Chamber

[David Mowat]

I am not giving the autumn statement, but I will say again that there is a 5% increase in real terms in adult social care funding during this Parliament, and that 42% of councils are increasing the budget in real terms this year.

[Kerry McCarthy (Bristol East) (Lab)]

The Minister needs to recognise that not only can it be more difficult for cities to raise money—we have already heard from colleagues comparing the amount that would be raised by increasing council tax in cities as opposed to more affluent rural areas—but demographic concerns make delivering health services more challenging in cities such as Bristol. We are already looking at £92 million of cuts or savings that we have got to find over the next five years. Will the Minister come to Bristol to talk to the Mayor and see what challenges we are facing?

[David Mowat]

Cities do have issues with delivering social care, but so do rural areas, which quite often have a very high proportion of older people. That, in itself, can absorb a great deal of cost. The truth is that, as I have acknowledged, the whole system is under pressure, including in Bristol. We acknowledge that, and we are increasing the total spend by 5% during this Parliament.

NHS Sustainability and Transformation Plans

Kerry McCarthy Excerpts

Wednesday 14th September 2016 Commons Chamber

[Heidi Alexander (Lewisham East) (Lab)]

I am grateful for the opportunity to speak in this debate. Sustainability and transformation plans—what are they, should the public be concerned, and are the plans good, bad or a mixture of both? As we have heard, over the last eight months or so STPs have been drawn up in 44 areas in England by a range of people involved in the running of the NHS and local government. As far as I can work out, they have come about because NHS England could see that in the chaos following the previous Government’s Health and Social Care Act 2012, there was no obvious body responsible for thinking about how best to organise NHS services at a regional and sub-regional level, so NHS staff and local government officials were tasked with assessing the health and care needs of their local populations, considering the quality and adequacy of the provision to meet those needs, and developing ideas about how those needs might be better met within available resources.

So far, so good, we might say, but there are three big problems. First, the current financial pressures on the NHS mean that the plans are likely to be all about sustainability, not transformation. Secondly, this is a standardised process to define and drive change, so we run the risk of good proposals being lumped in with bad ones, and of some plans simply focusing on the achievable, as opposed to the necessary and the most desirable. Thirdly, it is an inescapable fact that these plans are being developed when there is huge public cynicism about the motives of a Tory Government when it comes to change in the NHS. If the Government want to deliver change, the debate with the public needs to start in the right place—not behind closed doors, and not using jargon that no one understands. It needs to be focused on patients and their families, not on accountants and their spreadsheets.

I think most people understand that the NHS cannot be preserved in aspic. They understand that compared with the 1950s, we now use the NHS in a very different way. At the moment, they simply see an NHS under enormous pressure. They are waiting longer for an ambulance, to see a GP, to be treated in A&E and for operations. They see staff who are stressed out and who are on the streets in protest. When Ministers and NHS leaders talk about sustainability and transformation, the public are therefore dubious. For sustainability, they read cuts, and in some cases they will be right—it will mean cutting staff, closing services and restricting access to treatment. No matter good the plan, how thorough the analysis or how innovative the solution, we cannot escape the basic problem of inadequate funding for the NHS and social care.

[Kerry McCarthy (Bristol East) (Lab)]

In my constituency, we are very concerned because Bristol is in surplus but the footprint means that we will be going in with North Somerset and South Gloucestershire, which both have cumulative deficits. No matter what else is part of the plan, to us in Bristol it means cuts.

[Heidi Alexander]

That is the story we hear from all over the country. This is not profligate overspending on the part of NHS bosses or local government leaders; it is chronic underfunding on the part of Government. There was much fanfare associated with last year’s comprehensive spending review and what it meant for the NHS, but when we look at that financial settlement, along with the one in the last Parliament, we see a flatlining budget to deal with soaring demand.

As a country, we have a growing and ageing population. The reality is that in the last 10 years, the number of people living beyond the age of 80 has increased by half a million, and the NHS and social care are buckling under the strain. Although we should never give up on trying to organise the NHS in the most efficient and effective way possible, we have a choice. Do we want to cut services to match the funding available, or do we want to pay more to ensure that our grandparents and our mums and dads get the sort of care that we would want for them? If the NHS is to provide decent care for older people we need not only to fund social care adequately, but to find better ways of organising services to keep people out of hospital for as long as possible.

That leads me to the next problem. STPs are being used as a catch-all process to bring about change in the NHS, but many run the risk of focusing on the wrong things. They are being used as a vehicle to do different things in different places, and although some may lead to better treatment and better outcomes, the danger is that there will be knee-jerk, blanket opposition to everything. Some proposals will inevitably be controversial—the closure or downgrading of an A&E or maternity department will never be easy—but, in other cases, the plans may end up focusing on something that is not the burning issue.

Let me take my local area as example. The STP for south-east London proposes two orthopaedic elective care centres. The sites for them have yet to be decided, and the STP plan has yet to be signed off by NHS England. On the face of it, there is little wrong with the proposal to create centres of excellence so that all hip and knee replacements are done in one of two places. The problem is that when the front page of a national newspaper talks about the “secret” STP plans under which A&Es will close, my constituents fear the worst. “We’ve been here before,” they will say. They will smell a rat, even where one might not exist.

Psychosis: Early Intervention

Kerry McCarthy Excerpts

Wednesday 7th September 2016 Westminster Hall

[Kerry McCarthy (Bristol East) (Lab)]

As ever, it is a pleasure to see you in the Chair, Sir Roger. I also welcome the Minister to her place.

Psychosis is incredibly frightening for friends and family to witness, and I speak from personal experience. It means people in effect having lost control of what is going on inside their head but not realising it, and it is difficult to get through to them. It is also an incredibly frightening experience for the people who suffer such episodes— perhaps not at the time, when they are in the grip of psychosis, but it becomes apparent from talking to them afterwards. One person, a veteran of the first Gulf war who has suffered from psychosis for the best part of 20 years, said, “You never know again whether what you are experiencing, feeling and thinking is true, because other people are telling you your experiences were not true.” It is an incredibly distressing place to be.

Early intervention is crucial. Mothers in particular have come to my constituency surgery, desperate to keep their young adult sons out of the criminal justice system, yet that is often the only alternative. These are big lads who can be quite frightening when they are in the grip of psychosis. The last thing a mother wants is to see her son locked up in police cells for the night, but all too often that has been the only alternative. If the lads are not seen as a direct danger to themselves or to others they cannot be sectioned; the mothers do not want them to be sectioned but they desperately want to get them help.

I pay tribute to the police and crime commissioner in my local area, Sue Mountstevens. She is an independent candidate who has just been elected for the second time, and she has made it an absolute priority to try to get people with mental health problems out of the criminal justice system and to make sure there are beds available so they can get the help they need.

We know that psychosis is particularly prevalent among young men of black Caribbean or African origin. Indeed, the three mothers who have come to me about this issue are all of black Caribbean or African descent. It seems to be an established fact that these young men are more vulnerable, but I do not think we have ever got to the root of why that is the case, and I would like to see more research into that.

I agree with what has been said about parity of esteem; I think all parties now recognise that. Mental health has been the poor relation of physical health, but young people’s mental health has too often been the poor relation of adult mental health. Young people struggle.

[Ms Diane Abbott (Hackney North and Stoke Newington) (Lab)]

Does my hon. Friend agree that overall people of black Caribbean heritage are over-represented in the mental health system? These young men tend to present late. They tend to be less likely to get talking therapy and tend to have poorer outcomes.

[Kerry McCarthy]

I very much agree, and I would love to see more research into the reasons for that. We know that early intervention is crucial and that if there is intervention after the first episode of psychosis, it can be deflected further down the line. It may be that young men’s reluctance or the lack of access to those services means that they go on to develop full-blown psychosis, which then blights their adult lives. There could be all sorts of reason. I have heard my hon. Friend speak about this before. I know she thinks it is a really important issue, and I agree with her.

Young people are even more marginalised. I have the Riverside unit for young people in my constituency at Blackberry Hill hospital. It is part residential, part day placements. I visited it recently. If the spaces are full, a number of young people get sent a considerable distance from home and away from their friends and families for treatment, which is not ideal. If we are trying to deal with young people in very vulnerable circumstances, displacing them from their families and support networks is obviously wrong.

Dr Dominique Thompson, who is in charge of the GP services at the University of Bristol, has given me figures in the past about the proportion of the casework of GPs at universities that is now on mental health-based issues, and it has grown exponentially. That is everything ranging from anxiety, stress and depression right through to severe psychosis. I make a plea that the health services at universities are not the same as ordinary neighbourhood GPs; they need particular support. They deal with young people who are away from home and away from their support networks. We know that GPs are under pressure—particularly in terms of recruitment, which is a debate for another day—and it is important they have the resources to deal with that.

I want to mention briefly one source of help that is available to GPs. I met a group of researchers yesterday who are part of the Avon and Wiltshire Mental Health Partnership NHS Trust and are based at Blackberry Hill hospital in my constituency. They do something called BEST—best evidence summaries of topics—in mental health, which is a web-based service. Basically, these experts look through all the information available and distil it down to easy paragraphs for clinicians, so that rather than having to wade through all the material on the internet, clinicians are given some guidance as to what they are likely to be looking at and the likely best treatments. The funding for that service is under threat. A cross-party group of MPs from the Avon and Wiltshire area met those researchers yesterday. We think that the service should at the very least be piloted, with a view to rolling it out nationally, because it is a really valuable resource. We are going to write to the Minister about that, but I wanted to flag it up today.

Finally, I was looking this morning at the NICE guidance on early intervention in psychosis access. It pays passing reference to substance abuse, saying:

“Around 40% of people with first episode psychosis misuse substances at some point in their lifetime.”

I would like to see more research done into cannabis-induced psychosis. It is clear to me—partly from anecdotal evidence, but there is research out there—that partly because of the stronger strains of cannabis that are now available, more people are presenting with cannabis-induced psychosis. There may be a connection between that and people going on to develop full-blown psychosis, or people may have a cannabis-induced psychotic episode and then recover. Speaking partly from personal observation, I think that in some cases drug use makes it more difficult to diagnose when people are suffering first-time psychotic episodes. I would like to see more research into that.

[Dr Lisa Cameron]

The hon. Lady is making an extremely valid point in terms of comorbidity. Comorbid substance abuse often precludes people from treatment, and they can be turned away from treatment centres. As she said, it is very common and should not mean that people cannot access treatment.

[Kerry McCarthy]

There is also the issue of whether people feel they are self-medicating by smoking. They may feel that it helps their symptoms, whereas it quite often exacerbates their symptoms.

[Norman Lamb]

I appreciate the constructive and really helpful speech that the hon. Lady is making. She is absolutely right that we need to understand this issue better. Does she agree that whatever the link may be, we should not criminalise people for the use of cannabis in such circumstances? The idea of someone resorting to cannabis as a relief from pain and then being criminalised seems awful.

[Kerry McCarthy]

As I said earlier, I think that diverting mental health issues into the criminal justice system is completely the wrong approach. That includes people who have engaged in taking cannabis, which is an illegal activity. It serves no purpose at all to treat that as a criminal situation when people clearly need the intervention of the health services. The medicalisation of the problem is certainly something I endorse. On that note, I conclude my remarks.

Penrose Inquiry

Kerry McCarthy Excerpts

Thursday 26th March 2015 Commons Chamber

[Jane Ellison]

I think the Prime Minister was clear yesterday when he told the House that returning to this important matter and these tragic events was a priority. The reason we say it is an interim response is that the Prime Minister and this Government feel that a more substantive response will need to be given in the next Parliament. Of course my feeling is that we need to return to this important subject and respond more substantively across a wide range of issues. I am well aware of the high concern among sufferers about the way in which the current financial assistance schemes work, and they will need to be considered in a great deal more detail.

[Kerry McCarthy (Bristol East) (Lab)]

On Friday, I met a hepatitis C nurse and support worker in Bristol, and they urged not only speedier diagnosis but earlier treatment for people who are infected, before they develop serious liver problems. Will the Minister take that thought back to her Department?

[Jane Ellison]

Of course. In my response to the Backbench business debate, I gave Members a sense of how to represent constituents as regards the latest NHS treatments. The latest treatments available for hepatitis C are of a different order of effectiveness and have many fewer side-effects than the older treatments and it is important that anyone affected is seen by a hepatologist and referred appropriately. NICE and the NHS are currently considering the new treatments.

Jimmy Savile (NHS Investigations)

Kerry McCarthy Excerpts

Thursday 26th February 2015 Commons Chamber

[Mr Hunt]

I can certainly give that undertaking: we will start the consultation as soon as possible and if the conclusion is for legislation, we will legislate as soon as possible. I hope that my right hon. Friend understands that there is a great deal of complexity involved in getting this right. It is very important to talk to victims and to people who are looking at the evidence on mandatory reporting, which happens in other parts of the world, with very mixed results. Most importantly, we want to avoid the unintended consequence of a decision being taken against the interests of a child or vulnerable person because people are following a legalistic process which undermines the proper professional judgment made on the ground.

[Kerry McCarthy (Bristol East) (Lab)]

The sheer scale of this—the number of assaults, and the range of victims and locations—is just horrific, as I am sure everyone will agree. As has been said, the report states that 60% to 90% of current assaults on children are probably going unreported. Does the Health Secretary not think that better—indeed, compulsory—sexual relationships education in schools would mean that children are more likely to come forward and, importantly, that once they have gone through that education at school their parents would be more likely to believe them?

[Mr Hunt]

I do think it is very important to have good sex education in schools and that we make sure that all children understand when a boundary has been crossed and when they need to speak out. That is an important lesson from this report.

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.