NHS Specialised Services

Mark Tami Excerpts

Thursday 15th January 2015 Westminster Hall

[Mark Tami (Alyn and Deeside) (Lab)]

Thank you, Sir David. I thought that I would probably be next. Your knighthood was the very least that you should have been awarded; I think that that was even more creeping than everybody else’s contributions. I thank the hon. Member for St Austell and Newquay (Stephen Gilbert) for securing this important debate.

I will confine my comments to stem-cell transplants. As many other hon. Members have done, I declare an interest, because I am the joint chair of the all-party group on stem-cell transplantation. My eldest son, Max, had a stem-cell transplant some seven years ago, so I also speak from personal experience. Approximately 1,600 patients a year receive a transplant from an unrelated donor or a family member. Transplants are certainly not an easy option. When my son had one, someone asked me, “Why did you take the easy route?” If that is the easy route, I cannot imagine what the difficult route is like. It certainly was not easy; it is a highly risky process and there remains a high chance of mortality. Success rates have improved, however, and great progress has been made over the years. For many patients, a transplant is the only choice that they have to save their lives.

Most blood cancer patients will receive the protocol of chemotherapy and other drug treatments. That will be the preferred route for most patients, and most now have very successful outcomes. For some, however, the protocol is not appropriate and it will not work. Depending on their particular condition, the long-term outcome under that therapy is that they will relapse, so transplant is the only option. Some patients for whom chemotherapy was seen as the correct option will also relapse, and once that has happened, transplant is the preferred option. I emphasise that that is the case for a limited number of people.

Patient experiences and outcomes from transplant are very varied. Some will suffer a whole host of problems, and some may not. There is not a uniform outcome for every patient. The transplant episode, from an NHS point of view, is defined as a period beginning 30 days before transplant and ending 100 days after transplant, and services are commissioned nationally. After that period, funding for patient care returns to the local level, although patients will probably still get ongoing treatment at specialist transplant centres. The period of 100 days may be appropriate for many patients, but it is not appropriate for all. Some patients will have a very different experience and respond differently, and they will not come out the other end fine.

More than 50% of patients will experience graft-versus-host disease. Some minor graft-versus-host is expected, and it at least shows that the transplant has taken and that something is going on; it is fighting to establish a proper graft. If it gets out of hand, however, it can cause organ failure and, in the worst cases, death. The severity of the disease depends on how close a match the transplant is. The best match is always sought, but it can sometimes be difficult. I put on record the great work done by Anthony Nolan in getting people on the register. I emphasise that this is one of the few areas in which it is possible to save a life by giving something without having lost one’s own life, and it is an incredible experience.

[Sir Bob Russell]

Anthony Nolan asking people to go on the donations register is a wonderful aspect of life in the 21st century. Does the hon. Gentleman agree that there is a specific issue for people from ethnic minorities, and specifically for people of mixed ethnicity, because the number of people who can be matched is so small?

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[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.

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[Norman Lamb]

I can reassure my hon. Friend on both those points. Openness, transparency and engagement with patient groups are incredibly important, and I would always argue the case for them.

Collaborative commissioning would be an open offer; it would be an opportunity to keep up momentum for high-performing CCGs that are keen to deliver more for their local communities. NHS England is looking to pilot or trial these innovative arrangements in 2015-16—nothing more than that.

NHS England has established a specialised commissioning co-design group, including members of the NHS commissioning assembly, with advice coming from clinical and patient experts, to develop further the details of the collaborative commissioning approach. NHS England will also support CCGs to ensure that the commissioning system remains stable during the transition to any new arrangements.

NHS England is now embarking on a comprehensive programme of patient and stakeholder engagement to support the implementation of these changes; I think the hon. Member for Mitcham and Morden made a plea for that engagement to happen.

[Mark Tami]

It all sounds very good; localism is always thrown around as being a positive thing. My concern is that it still creates uncertainty. From the patient’s point of view, the uncertainty must be whether they will be able to access the treatment they need where they live.

[Norman Lamb]

That is a legitimate concern and fear, but the arrangements have the potential to avoid that risk, so that those concerns and fears are not realised; I will expand on that in a moment.

Guidance will be issued later this month setting out the detail of the proposed changes, alongside the criteria that determines which service is commissioned at which level. The engagement programme will include a number of patient and public engagement events and workshops in February, led by regional and area teams, to help to co-design the process for implementing the changes with CCGs. I encourage involvement with that programme, and as part of it NHS England will seek views on the criteria to decide which service is best commissioned at which level.

NHS England acknowledges that people are concerned about the re-emergence of a “postcode lottery”—the hon. Member for Alyn and Deeside specifically mentioned that point—as a result of a more collaborative approach. In particular, people are concerned that specialised services could once again be commissioned in a variety of ways across the country, resulting in patients experiencing difficulties in accessing services.

I totally understand why people have that anxiety, but let me be clear that NHS England would remain the accountable commissioner for any services commissioned collaboratively with CCGs. My hon. Friend the Member for St Austell and Newquay referred to the Health Committee’s concerns about the previous arrangements. However, because NHS England would remain the accountable commissioner and because commissioning would be done collaboratively, I think that concern has been sufficiently addressed.

Since April 2013, NHS England has achieved significant progress in developing a set of nationally consistent service standards and commissioning policies, which have been widely welcomed. They ensure equity of access to high quality services; the point about access was referred to by a number of hon. Members. These standards and policies will still apply for specialised services that are jointly commissioned by NHS England and CCGs, and NHS England will continue to improve on those in the years to come. I think that the shadow Minister, the hon. Member for Copeland (Mr Reed), also raised concerns about access and I hope that he finds what I have said about it reassuring.

For any services that are fully devolved to CCGs, allocations will be made on the basis of activity. Data from NHS England area teams would be used to trace historical activity levels and CCG funding allocations would be based on those, with adequate adjustments for population increase.

The purpose of the move to collaborative commissioning is to support more effective joint working and to allow discussions about service redesign to take place across the local health economy, engaging both national level and local level to try to build capacity.

In the short term, patients should not notice any difference to the service they receive, and in the medium to long term NHS England is confident that these changes should result in improvements, rather than a deterioration—including improved outcomes for patients, more integrated pathways and a better patient experience. We continue to work closely with NHS England as it develops these proposals and engages with all those involved in the commissioning of specialised services, including CCGs, individual patients and—critically—patient groups, area team commissioners and providers of services.

I thank all hon. Members and the sole right hon. Member here today, the right hon. Member for Wolverhampton South East, for contributing to this debate in a constructive way. The issues that have been discussed are of real concern, and it is right that they should have been raised. However, I think we have the potential to improve the way in which the system operates.