NHS: Specialised Services

Earl Howe Excerpts

Wednesday 18th July 2012 Lords Chamber

[The Parliamentary Under-Secretary of State, Department of Health (Earl Howe)]

My Lords, perhaps I may begin by congratulating my noble friend Lady Jolly on securing this short debate on the future of the Advisory Group for National Specialised Services. This is undoubtedly an important area for discussion, not only for the members of the advisory group who have worked hard to provide Ministers with advice but for patients and families who have benefitted from the national commissioning on which it leads.

At the outset I would like to say, in particular to my noble friend Lord Palmer and the noble Baroness, Lady Hollins, that in working up plans for the reform of the NHS, we absolutely recognised the needs of people with very rare and rare conditions. We wanted to make sure that we honoured the commitment in the NHS constitution that no one should be “left behind” because of the rarity of their condition. For these reasons, the legislation reflected our view that specialised and highly specialised services were best commissioned at a national level. Services will be set out in regulations, making it very clear what we are expecting the Commissioning Board to directly commission. I can assure my noble friend Lord Palmer that patients with rare conditions, depending of course on their clinical needs, will continue to have access to specialised services and expert treatment. I would say to the noble Baroness, Lady Masham, that the NHS Commissioning Board will retain money centrally to directly commission these services, including services for very rare conditions.

When the coalition Government were formed in 2010 we endorsed the previous Government’s proposal and established AGNSS as an independent stakeholder advisory group, bringing advice and funding together into one body. We also gave AGNSS the specific role of considering whether certain very high-cost, low-volume drugs should be included in the national arrangements for specialised commissioning. In developing this role, AGNSS worked very closely with NICE and developed its own decision-making system.

Under the Health and Social Care Act 2012, this situation will change from April 2013. Instead of highly specialised services being commissioned nationally by the National Specialised Commissioning Team and specialised services being commissioned on a regional basis by specialised commissioning groups, the new NHS Commissioning Board will take responsibility for commissioning all these services. That will all be under a national commissioning policy which will be sensitive to local requirements so that the needs of people with rare and very rare conditions are met.

Ministers will still be responsible for deciding what services the board should be asked to commission, but it will be the responsibility of the board to decide how it commissions those services. The functions of AGNSS cut across both the “what” and the “how” so I do not see a role for AGNSS in its current form from April 2013 and it will cease to be an advisory group offering advice to Ministers.

I would like to set out the current functions of AGNSS and consider in turn where each would sit in the future. The first function of AGNSS is to advise Ministers on which highly specialised services, products and health technologies should be nationally commissioned. That will be expanded to cover all specialised services and not just the highly specialised. Ministers will need to receive advice on whether services can be defined by the rarity of the condition, the cost of providing the service or facility, the number of centres able to provide the treatment, and financial implications for clinical commissioning groups. We are currently considering an appropriate advisory mechanism for Ministers that will keep the list of services directly commissioned by the board under review, ensuring that services are commissioned at the right level. In time, some services might be more appropriately commissioned by clinical commissioning groups, but I emphasise the words “in time”.

The second function of AGNSS is to advise Ministers on which centres should be designated providers for nationally commissioned services. In the new reformed NHS, this is rightly the role of the Commissioning Board in carrying out its commissioning of services. It is no longer for Ministers to decide upon. Therefore, advice to Ministers is no longer required. The same is true for the third function of AGNSS: advising on the annual budget for new and existing nationally commissioned services and the contribution required from PCTs. The fourth function is to advise on funding of the management function of the NSCT as hosted by NHS London. That will no longer be needed. The Commissioning Board will manage one single specialised services budget and commissioning function. So, again, Ministers would no longer need that advice, and it will be a matter for the Commissioning Board.

Whether commissioning a cataract operation or the most highly specialised and long-term treatment, the most important thing is quality of care. We must prioritise good-quality clinical advice on highly specialised services over the structure of a group for its own sake. Work on developing an advisory mechanism for the board on highly specialised services is ongoing. The chair of AGNSS, Professor Michael Arthur, is working with the NHS Commissioning Board Authority on such an advisory mechanism that would build on the skills and expertise of current arrangements. Within the board, there will be a clear focus on specialised services, organised around programmes of care to make sure that services are always top-notch. Commissioning teams will make sure that contracts with providers reflect the needs of people with rare and very rare conditions. On top of that, there will be specific links to innovation, including a specialised services innovation fund. The board will also manage stakeholder engagement.

I mentioned one important aspect of the work of AGNSS, in assessing very high-cost, low-volume drugs, but so far I have not explained where this function will sit in the new system. We have looked at several potential options. I am pleased to announce that, on the basis of a detailed proposal and discussions, we have asked NICE to take on the assessment of very high-cost, low-volume drugs from April 2013. I am aware that some noble Lords may have concerns about NICE taking over this work, as the current cost per quality-adjusted life year that NICE operates for its appraisals of drugs would rule out highly expensive drugs for small numbers of people with rare conditions. We have explored this issue thoroughly with NICE and it has developed a process for assessing such drugs. It will build on the decision-making framework that AGNSS uses at the moment. That framework balances health gain, best clinical practice, societal value and reasonable cost. In addition, recommendations from NICE will not be based solely on a cost per QALY figure.

NICE proposes setting up a dedicated expert panel to produce an assessment of a new drug, usually within six months. Given that we wish the new process to commence in April 2013, NICE will develop interim methods for the first few assessments. The institute plans to subject these processes and methods to a consultation in 2013-14 alongside the assessments it will carry out. NICE’s work will make sure that we have a robust, transparent and consistent process in place for assessing very high-cost, low-volume drugs. We have a number of points of detail that Department of Health officials are still exploring with the institute. I will be able to say more about the detail of this proposal in the coming weeks, but, in the mean time, I thought it important to provide a progress report to the House.

The noble Lord, Lord Turnberg, asked about the mandate. I can tell him that the consultation on the draft mandate, which was launched on 4 July and on which we welcome views and comments, emphasises the importance of driving improvements in the £20 billion- worth of services commissioned directly by the board, including specialised services for people with rare or very rare conditions. One of our proposed objectives in the draft mandate asks the board to put in place arrangements to demonstrate transparently that these services are of high quality and represent value for money.

The noble Lord, Lord Hunt, expressed his dissatisfaction that, as he sees it, Parliament will not have a say in which services are commissioned by the NHS Commissioning Board. The consultation on the mandate provides Parliament and, indeed, others with the opportunity to express views on that matter. I would also reassure the noble Lord, Lord Turnberg, and my noble friend Lord Palmer that within the board there will be a clear focus on specialised services, including experts on highly specialised services, organised around programmes of care and with a national commissioning policy for specialised services that is sensitive to local needs, as I mentioned. Clinical leadership will be the responsibility of Professor Sir Bruce Keogh and advisory mechanisms to the board are being developed. Within 10 of the 27 local area teams of the board, there will be expertise in highly specialised services.

The noble Earl, Lord Listowel, asked about children with specialist mental health issues and whether they would have access to appropriate treatment. I can give the assurance that such services will be available once the board is responsible for commissioning them. Specialised services relating to mental health was the theme taken up by the noble Baroness, Lady Hollins. We are not yet in a position to announce the full list of the services that the board will be commissioning. However, a great deal of work has been going on to draw up that list. The chairs of 60 clinical reference groups have been working on the matter. They are all leading clinicians in their fields. The CRGs hold a broad membership and an assurance process was established that looked at the work of the CRGs. The findings of the CRGs were considered by the CAG in May of this year and Ministers expect to set out the list of services over the summer.

In answer to the noble Baroness, Lady Masham, I am of course very sorry to hear about the child she mentioned who has neuroblastoma. Obviously, for reasons of patient confidentiality, it is not appropriate to comment on individual cases. At the moment the decision for funding treatments for neuroblastoma rests with PCTs. In the future, commissioning decisions for patients with rare conditions will, as I have mentioned, rest with the board. I cannot say definitely whether that will be one, but the noble Baroness may like to draw her own conclusions. I am informed that the evidence base for stem cell-based therapy for neuroblastoma is not yet sufficiently robust despite the comments she made.

The noble Lord, Lord Walton, asked for an assurance that molecular patches will not be subject to constant regular testing. Molecular patches that are found to be safe by the regulatory process can be used on the NHS. My noble friend Lady Thomas spoke eloquently about research. She is absolutely right in the importance she attaches to that. The Government will invest £800 million over five years from April this year in NIHR biomedical research centres and units. Most of these centres are conducting leading-edge research on rare diseases that will benefit patients with these conditions. The NIHR has joined the International Rare Diseases Research Consortium and is actively involved in pursuing the consortium’s goals.

Time is now against me. I beg leave to write to noble Lords who asked me questions that I have not had time to answer. Once again, I express my gratitude to my noble friend for raising this important subject.