Rare Disease Strategy

Simon Burns Excerpts

Monday 30th April 2012 Commons Chamber

[The Minister of State, Department of Health (Mr Simon Burns)]

May I begin by congratulating my hon. Friend the Member for Crewe and Nantwich (Mr Timpson) on securing this debate on what is a most important topic for a great number of people, and on the sensitive way in which he outlined his concerns, particularly those that affect his family? May I also congratulate him on running the London marathon an hour and a half quicker than the shadow Chancellor?

As we have heard, anybody, at any stage in life, can be affected by a rare disease, which can range from manageable conditions that do not affect daily living to debilitating conditions that have a significant impact on one’s quality and length of life. The Government are committed to providing the best quality of care to people with rare conditions, and the importance that we attach to services for people with rare conditions is clearly demonstrated in the reforms we set out in the Health and Social Care Act 2012. Through the Act, specialised services, which are currently provided at both national and regional level through a range of NHS organisations, will be brought together under one roof. From April 2013, the new NHS Commissioning Board will directly commission services for people with rare diseases on a national basis.

My hon. Friend asks for an explanation of how the NHS Commissioning Board will operate to ensure cluster-type service delivery in respect of rare diseases. Moving to a national standard system of commissioning but maintaining a regional focus gives the geographical and speciality oversight that he describes. National specifications will lead to services being defined once for England, allowing clear planning to take place across the country.

[Mr David Anderson (Blaydon) (Lab)]

I congratulate the hon. Member for Crewe and Nantwich (Mr Timpson) on a fine speech. As the chair of the all-party parliamentary group on muscular dystrophy, may I ask the Minister about two connected points in respect of what he has just said? There has been a great development within neuro-muscular services and work by the House and the Department. Will the Minister meet the all-party group and the muscular dystrophy campaign to discuss the progress of the national neuro-muscular work plan? Will he also give us an assurance on the positive advantages in the south-west region—he mentioned regional development—and confirm whether there will be strategic clinical networks for neuro-muscular services across the country?

[Mr Burns]

I am grateful to the hon. Gentleman. I recognise the tremendous work he does in this area of health care and congratulate him on his efforts. With regard to a meeting, I will pass on his comments to my noble Friend the Earl Howe, who has responsibility for this area of health care. On the hon. Gentleman’s second point, I am more than happy to give him the assurances he seeks.

The proposed operating model for specialised commissioning links national service knowledge and expertise with local contract knowledge of providers and pathways of care, cementing the new system together in the interests of patients. The benefits to patients with rare conditions are clear: a single national commissioning policy and better planning and co-ordination will result in improved consistency across the country.

My hon. Friend asked me to set out the Government’s thinking on the suggestion from the former chief medical officer for a national clinical director for rare diseases. I can assure him that there will be a director within the NHS Commissioning Board with lead responsibility for specialised services for people with rare conditions. The board will also consider the most suitable form of clinical advice covering the domains of the NHS outcomes framework. Rare diseases come under domain 2: long-term conditions.

Our commitment to people with rare conditions is demonstrated through our recently published, “A UK Plan for Rare Diseases”. The consultation was launched on 29 February—Rare Disease day—and was produced jointly by the four nations of the United Kingdom. The consultation will continue until 25 May and is an important step on the way to producing the final plan. I urge everyone with an interest in this area of health care to contribute to the consultation process.

This will be the first time that the UK has developed a plan to tackle rare diseases, and the consultation represents collaboration across the four nations of the UK. It brings together a number of recommendations designed to improve the co-ordination of care and to lead to better outcomes for people with rare diseases. We suggest that improvements can be made through earlier diagnosis, better co-ordination of services, stronger research and better engagement with patients and their families. Many of these recommendations will be of direct benefit to patients and can help the NHS to be more efficient and co-ordinated and to save money.

Earlier diagnosis through clear care pathways to expert centres can prevent disability, and in some cases save lives, by allowing an earlier start for effective treatment. It will also save money by avoiding more intensive or emergency treatment. More co-ordinated care saves patients’ time, money and stress by avoiding multiple visits to various clinics. As many rare diseases are of genetic origin, we must also embrace advances in genetics and genomic medicine and ensure that the NHS is ready to support and take full advantage of these developments.

My hon. Friend has already mentioned that people with rare diseases need to be able to access orphan medicines. Our priority is to give NHS patients better access to the innovative and effective drugs that their doctors recommend for them, including those designated as “orphan drugs”. The new system of value-based pricing will bring the price the NHS pays for drugs more in line with the value it delivers. Notwithstanding this, we know that there may be instances where an individual medicine should not be assessed under value-based pricing. We will keep the situation under review. If, as we begin to implement value-based pricing, it becomes clear that some treatments would be better dealt with through separate arrangements, we will explore alternative options.

The consultation document sets out a coherent approach to tackling rare diseases. It recognises existing developments while setting out a number of further developments, such as on better information for patients to help them manage their condition. My hon. Friend asked for reassurance that we are putting steps in place in preparation for the introduction of the international classification of diseases—ICD-11. I can assure him that the NHS is moving towards widespread use of systematized nomenclature of medicine clinical terms—Snomed CT—in preparation for the introduction of ICD-11.

The consultation will inform the final UK plan for rare diseases. We hope that the final plan will offer a framework for managing rare diseases wherever they occur. Each nation of the UK will then take forward implementation of the plan in accordance with its own priorities and patterns of service. In England, much of the implementation of the final plan will be for the new NHS Commissioning Board to take forward, in close dialogue with Public Health England.

As my hon. Friend will appreciate from my comments in this relatively short but important debate, he has raised an extremely important issue that all too often is forgotten in the mainstream of the NHS, where people concentrate on more acute services, rather than this highly specialised area. My hon. Friend the Member for Stourbridge (Margot James) mentioned a particular illness or condition. May assure her that following her intervention, I will ask my noble Friend the Earl Howe to write to her about the issue she raised?

In conclusion, the development of the first ever UK plan is an important signal of our continuing commitment to providing good quality services to people with rare conditions. The consultation is aimed at a wide audience, including not just clinicians and NHS specialised commissioners, but patients, their carers and families, support groups, specialist organisations, researchers, academics and colleagues from across social care. I call on all hon. Members to encourage their constituents with an interest in rare diseases to take part in this important consultation.

Question put and agreed to.