Archive of: March, 2015

• Members call for national funding and standards for specialised services to be protected

  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:

  OPEN LETTER

  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.

  Yours sincerely,

  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

• Improving NHS England's Policy Process

  March 2015

  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:

  SHCA – NHS England Policy Development Process Proposal

• Lords debate on rare diseases - SHCA briefing

  March 2015

  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