Archive of: March, 2015
56 of the Alliance’s members have signed open letters calling on party leaders to maintain national funding and care standards for people with rare and complex conditions.
Since April 2013, 147 such services have been funded by the NHS at national level, enabling consistent standards of access and care for patients across England. NHS England has, however, announced its intention to move to local place-based budgets for specialised services. This could precipitate the same variation in access experienced by women seeking IVF, with only one in five Clinical Commissioning Groups offering treatment in line with NICE guidelines.
A copy of the letter to the Prime Minister is as follows:
Dear Prime Minister,
We write as charities in membership of the Specialised Healthcare Alliance, a broad coalition campaigning on behalf of patients with rare and complex conditions requiring specialist NHS care.
The NHS budget for these services is over £14 billion. They include services for the most vulnerable patients with the rarest conditions, as well as those for more commonly known conditions, including brain and spinal injury, cancer, Cystic Fibrosis, HIV and Multiple Sclerosis.
Each of the main political parties has supported national commissioning of these services since the last General Election. There are now concerns that otherwise desirable collaboration with local commissioners could in future jeopardise consistent national standards of care across the country.
We therefore call on you to pledge that, should you form the next Government, you will maintain and protect national budget-holding and accountability for prescribed NHS specialised services.
We are writing to each of the main parties in similar terms and look forward to your response.
Paul Lenihan, Action Duchenne
Alan Heywood-Jones, Alpha-1 Awareness UK
Lynne Regent, Anaphylaxis Campaign
Chris Phillips, Behçets International
Caroline Davey, Bliss
Paddy Tabor, British Kidney Patient Association
Andrew Langford, British Liver Trust
William Campbell, British Pain Society
Patricia Osborne, Brittle Bone Society
Ed Owen, CF Trust
Alison Taylor, Child Liver Disease
Carlee Gilbert, Child Lung Foundation
Anne Keatley-Clarke, Children’s Heart Federation
Rosanna Preston, Cleft Lip and Palate Association
Laura Courtney, CLIC Sargent
Catherine Harris, Communication Matters
Sarah Vibert, Epilepsy Society
Paul Decle, Forum Link
Caroline Harding, Genetic Disorders UK and CGD Society
Jayne Bressington, GIST Support UK
James Babington Smith, Guillain-Barre and Associated Inflammatory Neuropathies
Charles Gore, Hepatitis C Trust
Kathy Oliver, International Brain Tumour Alliance
John Reid, Limbless Association
Sally Light, Motor Neurone Disease Association
Nick Rijke, MS Society
Nickie Roberts, Multiple System Atrophy Trust
Eric Low, Myeloma UK
Deborah Gold, National AIDS Trust
Timothy Statham, National Kidney Federation
Arlene Wilkie, Neurological Alliance
Richard Rogerson, Niemann-Pick Disease Group
Katharine Taylor, Ovarian Cancer Action
Steve Ford, Parkinson’s UK
Richard Surman, Pelvic Radiation Disease Association
Tess Harris, PKD Charity
Lesley Kavi, POTS UK
Susan Walsh, Primary Immunodeficiency UK
Andrew Wilson, Rarer Cancers Foundation
Richard Piper, Roald Dahl’s Marvellous Children’s Charity
Pat Roberts, Save Babies Through Screening Foundation UK
Chloe Kastoryano, Scleroderma Society
Amy Baker, Scleroderma Society UK
David Scott-Ralphs, SeeAbility
John James, Sickle Cell Society
Paul Stemman, Sign Health
Dan Burden, Spinal Injuries Association
Siobhan Dunn, Teenage Cancer Trust
Rosemary Gillespie, Terence Higgins Trust
Dalton Leong, The Children’s Trust
Jayne Spink, Tuberous Sclerosis Association
Arlene Smyth, Turner Syndrome Support Society
Matthew Buckland, UK Primary Immunodeficiency Network
Chris Sotirelis, UK Thalassaemia Society
Colin Dyer, WellChild
John Cowman, Young Epilepsy
The Specialised Healthcare Alliance was asked by NHS England to develop proposals for improvements to its policy development process for specialised services.
The proposal sought to outline a process which would combine greater transparency and timeliness alongside robustness in the development of policy.
Specialised Healthcare Alliance members fed into the proposals, which are now with NHS England for their consideration.
They can be read in full here:
On Tuesday 3rd March, Lord Turnberg led a short debate in the House of Lords on access to treatment for people with rare diseases.
The debate covered a number of important issues, including the desire for greater clarity on NHS England’s internal structures and processes.
The lack of patient access to new treatments pending the outcome of NHS England’s ongoing consultation on principles for investing in specialised services was also raised, without assurances from the Minister on the issue.
The Specialised Healthcare Alliance provided briefing to Peers ahead of the debate and drew particular attention to the patients left in limbo by the ongoing consultation without recourse to interim funding.
You can read the Alliance’s debate briefing here: SHCA Briefing – Lords Debate on Rare Disease Treatment Access
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If you have information about provision of specialised services that you would like to bring to our attention or if you would like to know more about the SHCA, please contact us at: email@example.com