Specialised commissioning has been largely absent from NHS reform debate

Protect specialised care provision

The new NHS set-up is a real opportunity to make significant and long-lasting improvements in healthcare for people with rare conditions.

However, it seems specialised commissioning has been largely absent from the debate around NHS reform. Neuromuscular clinicians we work closely with have expressed their concern that commissioning policy for this group of services seems to be fragmented across a number of different clinical reference groups. Given responsibility at a more local level looks set to be shared between GP-led CCGs, local area teams and hospital trusts; there is also a clear risk that the pathway for patients with rare and complex might become fragmented. 

Families with rare forms of muscular dystrophy and related neuromuscular conditions have for too long struggled to access the specialist, multidisciplinary care and support they need to manage their conditions and improve their quality of life.

It is vitally important that specialist care provision for people with rare and complex needs is both protected and developed as the new NHS structure takes shape.

Nicholas Bungay, director of campaigns, care and information, Muscular Dystrophy Campaign