SHCA letter to The Times

The Chair and members of the Specialised Healthcare Alliance wrote to The Times newspaper last Thursday 6th November to express their serious concern on proposed changes in specialised commissioning.

The letter and list of signatories is enclosed below.


The Health and Social Care Act 2012 has been much criticised. The decision to transfer responsibility for specialised services from local commissioners to NHS England was, however, recognised by all as a sensible step, providing certainty around standards and access to treatment where previously there had been little or none.

NHS England’s subsequent experience has been less happy, involving a substantial overspend and cumbersome decision-making, all with damaging effects for patients.

These problems are, however, fixable and do not challenge the fundamental sense of planning specialised services and sharing the associated financial risk across the country.

It is therefore of serious concern that NHS England is now proposing to co-commission specialised services with local clinical commissioning groups (CCGs).

It makes sense for the NHS to collaborate at national and local level, but muddying budgets and responsibility between NHS England and CCGs promises a return to the postcode lottery of the past.

We write as members of the Specialised Healthcare Alliance.

Baroness Wheeler of Blackfriars (Chair)
Anne Keatley-Clarke, Children’s Heart Federation
Arlene Wilkie, Neurological Alliance
Caroline Davey, Bliss
Catherine Harris, Communication Matters
Chloe Hayward, UK Acquired Brain Injury Forum
Chris Phillips, Behçet’s Syndrome Society
Christos Sotirelis, UK Thalassaemia Society
Colin Dyer, WellChild
Dan Burden, Spinal Injuries Association
David Edgar, UK Primary Immunodeficiency Network
David Ryner, CML Support Group
Deborah Gold, National AIDS Trust
Ed Owen, Cystic Fibrosis Trust
Elizabeth Bevins, Raynaud’s & Scleroderma Association
Henny Braund, Anthony Nolan
Jackie Bland, Shine
James Babington Smith, Guillain Barré and Associated Inflammatory Neuropathies
Jayne Spink, Tuberous Sclerosis Association
Jeremy Taylor, National Voices
John Kell, Motor Neurone Disease Association
Lara Bloom, Ehlers-Danlos Support UK
Lesley Kavi, Postural Tachycardia Syndrome UK
Liz Carroll, Haemophilia Society
Lynne Regent, Anaphylaxis Campaign
Nick Sireau, AKU Society
Paddy Tabor, British Kidney Patient Association
Paul Decle, Forum Link
Paul Lenihan, Action Duchenne
Richard Piper, Roald Dahl’s Marvellous Children’s Charity
Richard Rogerson, Niemann-Pick UK
Rosanna Preston, Cleft Lip & Palate Association
Rosemary Gillespie, Terrence Higgins Trust
Sasha Daly, Teenage Cancer Trust
Steve Powell, SignHealth
Susan Walsh, Primary Immunodeficiency UK
Timothy Statham, National Kidney Federation