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.