NHS: Specialised Services

Baroness Jolly Excerpts

Wednesday 18th July 2012 Lords Chamber

Asked By

[Baroness Jolly]

To ask Her Majesty’s Government what is their assessment of the future of the work of the Advisory Group for National Specialised Services.

[Baroness Jolly]

My Lords, I declare an interest as chair of the Specialised Healthcare Alliance, a coalition of 79 patient-related organisations receiving financial support from 11 corporate members, which campaigns on behalf of people with rare and complex conditions.

The Advisory Group on National Specialised Services, or AGNSS, was established in 2010. Its role was to provide a single source of advice to Ministers on whether services, products or technologies for very small patient populations, usually not exceeding 500 for England as a whole, should be commissioned at national level rather than by PCTs, individually or collectively. Some 65 services are enormously important to over 10,000 people with a range of very severe and frequently life-threatening conditions.

What makes AGNSS different is that it brings eminent clinicians together with commissioners in considering these complex matters and integrates other vital perspectives through members with health economics and ethical expertise and from the lay community. For the first time, AGNSS evaluates services, products and technologies using an ethical decision-making framework that holistically balances a range of factors, including patient need, clinical severity, clinical effectiveness, affordability, service efficiency and the value to society. It would be fair to say that the development of AGNSS and its decision-making framework, with widespread input from all parties, was seen as a model of its kind and that the group, under the capable leadership of Professor Michael Arthur, has only grown in stature over the past two years.

Organisations and others with an interest in the health and welfare of people with very rare conditions were greatly concerned when it was announced at the turn of the year that AGNSS would be entering a moratorium, pending decisions about its future. If the reaction to this debate is anything to go by, it is much appreciated and valued by research scientists, organisations representing patients and pharmaceutical companies, who have all expressed their alarm at its possible demise.

My understanding is that this decision stems from the view that an advisory group for Ministers will be incompatible with the provisions of the Health and Social Care Act 2012, which devolves responsibility for the commissioning of all specialised services to the NHS Commissioning Board. To quote from my noble friend the Minister’s letter of 8 June to Mark Simmonds MP:

“In the future, there will be a clear differentiation between what services the Board should commission and how those services are commissioned. It will remain the responsibility of ministers to consider, on the basis of appropriate advice, the list of services that should be directly commissioned by the Board. Ministers will then consult with the Board on those services before laying regulations that will specify the services that will be commissioned. It will be for the Board to decide how it commissions the service”.

As the letter acknowledges, Ministers will need advice on what services are to be prescribed in regulations for commissioning by the board. My understanding is that the Clinical Advisory Group, presently chaired by a civil servant, Dr Kathy McLean, will fulfil this function in relation to the generality of services. The question is whether highly specialised services should be channelled through the same route.

The views of eminent clinicians presently sitting on AGNSS or leading services commissioned through the AGNSS process suggest that this is at least worthy of debate. In particular, AGNSS is recognised as a route whereby such services can engage with commissioners. I am told that this is an iterative and demanding process, taking some considerable time before a decision is taken. The net result is generally one where there are indeed costs to the NHS, but often costs that are reduced as a result of coherent commissioning. For example, the decision to commission severe acute porphyrias means that young people presenting with potentially fatal attacks should now have speedier access to expert care with less wastage of the relevant drug, haem arginate, which has a short half-life. Similarly, AGNSS was able to advise on the managed introduction of extracorporeal membrane oxygenation, or ECMO, which has saved many people whose lungs are severely distressed, most notably as a result of swine flu.

The danger is that without a clear port of call in the form of AGNSS, these important services may get lost from sight, as will the opportunity to develop them in a way that meets the needs of patients and delivers best value to the NHS. Furthermore, Ministers may be hard pressed to decide on whether the board should commission such services without high-quality advice on what they comprise.

The relevance of these services, not just to England but to all parts of the United Kingdom, would also seem to count in favour of retaining an advisory group alongside Ministers, as would the broader strategic importance of issues such as proton beam therapy. I therefore put it to my noble friend the Minister that in the case of highly specialised services there might be merit in retaining a group providing a single source of advice to Ministers but with a dual reporting function to the board in determining how such services should be commissioned.

As for the composition of this group, I have heard it said from reliable sources that if AGNSS did not exist it would need to be invented. In a recent conversation with Professor Arthur, he outlined the three components that made AGNSS effective, unique and special: the support from the national specialised commissioning team, the strength of the group—an ethicist, a health economist, a geneticist, a pharmacist, representatives of all royal colleges, representatives of SHAs, lay people, carers and patients, commissioners from PCTs and a member of the HTA—and excellent advice to AGNSS from public health doctors.

We are going through a period of enormous change in the NHS, but change for change’s sake is to be avoided at any time—and surely now more than ever. I therefore urge the Minister and the chief executive of the NHS Commissioning Board to think carefully about disbanding AGNSS when the need for it remains unchanged. Historically, the view has been taken that NICE would struggle to combine under one roof the evaluation of products with a cost per quality-adjusted life-year often very substantially higher than the threshold which usually applies. Furthermore, in this highly specialised field, where a service develops around a novel treatment, the distinction between services, products and technology is sometimes difficult to make in areas of previously unmet need.

The AGNSS decision-making framework therefore represents a major step forward. It recognises that the evidence-base for small patient populations may be less developed. At the same time it imposes demanding standards in terms of the number of patients whose condition improves as a result of a treatment, compared to the total number of patients treated. This approaches 100% for more expensive services, products and technologies.

That progress has been hard won and should not be squandered but built upon. In a debate in the House of Commons on 30 April about a strategy for rare diseases, the Minister of State, the right honourable Simon Burns MP, appeared to suggest that value-based pricing will supersede the need for separate arrangements for treatments for very rare conditions, but that alternative options will be explored in case of need.

All are agreed that value-based pricing has exciting potential. The challenge of expressing that potential will be considerable for the generality of treatments, but it will be undoubtedly greater for very rare conditions. In the mean time, retention and development of the AGNSS framework would seem to have great merit.

AGNSS represents something of a jewel in the crown. The dancer cannot be easily separated from the dance in determining which highly specialised services to commission and how to commission them. Ministers will continue to need high-quality advice. I would hope also that the first mandate to the board recognises the value of this heritage and bestows it for safekeeping.