Tuesday 13 July 2010
NHS reforms may have devastating impact on rare conditions
The Muscular Dystrophy Campaign has expressed serious concerns about the Health Secretary Andrew Lansley's new-model NHS set out in yesterday’s White Paper, raising fears that it will put people with rare conditions at risk.
There are 6,000 different types of rare diseases affecting around 3.5 million people in the UK. A lack of detail about how healthcare for people with rare conditions will be provided for has left millions of patients in limbo as they try to work out where to expect services from in future - 70,000 of these patients have neuromuscular conditions.
Worries about the White Paper raised by the Muscular Dystrophy Campaign include:
- It is unclear where the budget for specialised services for people with rare conditions will come from - the NHS Commissioning Board or the new GP consortia?
- No assurance that any progress made in improving healthcare for muscle disease patients will go through the Specialised Commissioning Groups. They were formed three years ago and patients fear could be suspended indefinitely while changes in the NHS take shape.
The Muscular Dystrophy Campaign's Acting Chief Executive, Robert Meadowcroft, said:
It's shocking that the future role of essential, specialised services for people living with very rare conditions has been almost completely absent from the debate following the publication of the White Paper. The only reference to rare and very rare conditions is that they will be commissioned by the NHS Commissioning Board. We welcome this decision as over half of all people living with muscle disease say that their own GP does not have a good understanding of their condition.
However, key questions still need to be answered. At the moment, Primary Care Trusts collaborate regionally to commission specialised services for people with rare conditions. Will the new NHS Commissioning Board have its own budget for these particular services, or will the new GP consortia contribute part of their budgets towards specialised services?
It is also important that the commissioning of specialised neuromuscular services is accountable to people living with muscle disease - families need to know who is responsible for ensuring they have access to high-quality specialised services which can extend lives and improve quality of life.
The Muscular Dystrophy Campaign has been working with the 10 regional Specialised Commissioning Groups (SCGs) who are responsible for healthcare for rare conditions over the last two years. Raising awareness of muscle disease with the SCGs and inviting them to meet patients who desperately need services to be improved has been invaluable in securing investment and better healthcare services.
The Muscular Dystrophy Campaign is concerned that re-organising the ways healthcare for rare conditions is controlled could undo this progress and make patients' lives more difficult again.
The charity is keen that this work can continue with the new NHS Commissioning Board. Only three years since the establishment of the Specialised Commissioning Groups, further re-organisation may leave vulnerable families living with devastating, life-limiting conditions at risk of paralysis in service delivery while changes take shape. We call on Andrew Lansley to give his personal assurance that families living with rare conditions are not ignored and abandoned in his new model NHS.
For further information about the Muscular Dystrophy Campaign's fight to improve services across the UK and the proposed NHS reforms, please get in touch:
020 7803 4847
campaigns@muscular-dystrophy.org
Twitter: CampaignsMD
