News item

Archive of: March, 2015

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

    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.

    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

    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:

    SHCANHS England Policy Development Process Proposal

  • Lords debate on rare diseases - SHCA briefing

    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