News Archive

Archive of: May, 2017


  • SHCA writes to the three party leaders urging them to commit to reversing NHS medicines rationing

    The Telegraph has published an article on the letter signed by over 30 members of the SHCA on the rationing of treatments. The full text can be found here and has been included below:

    More than 30 charities have written to the three party leaders urging them to commit to reversing NHS measures to increase rationing of medicines.
     
    Health officials last month brought in new thresholds which mean access to one in five treatments could be delayed or restricted.
    Under the rules, all drugs expected to cost the NHS a total more than £20 million a year will be checked against new “affordability criteria”.
     
    The cost threshold set by NHS England could affect medicines costing as little eight pence a day, if used commonly enough, as well as high cost medicines used for rare diseases.
    Rationing body the National Institute for Health and Care Excellence (Nice) has said it is likely to affect around 20 per cent of drugs it assesses, with the process including changes that the head of its rationing body has previously described as “unfair”.
    In an open letter to Theresa May, Jeremy Corbyn and Tim Farron, the charities – which include Parkinson’s UK, the Children’s Heart Federation and the MS Society – ask all the parties to commit to reversing the changes.
     
    The signatories – all members of the Specialised Healthcare Alliance – said that the measures “stand to restrict and ration treatments for people with rare and complex conditions, and were implemented without the agreement of Parliament.”
    The letter comes as political parties prepare to publish their manifestos for the election.
     
    Caroline Harding, chief executive of Genetic Disorders UK said: “Under these plans, some of the most critically ill patients are being denied access to potentially life-changing treatments.
    “Any decision to ration access to medicines should be taken by ministers, not unelected officials.”
     
    Kay Boycott, chief executive, Asthma UK, said: “There is a real risk that these plans will turn the clock back on access to life transforming treatment.”
     
    Sarah Vibert, chief executive, Neurological Alliance, said: “Politicians from all sides should pledge to rethink these damaging proposals.
     
    “It is completely unacceptable that patients with neurological conditions risk being denied access to treatment solely on the basis of cost.
     
    None of the parties have formally published their manifestos. But the draft Labour manifesto, leaked last week, said: “Labour will tackle the growing problem of rationing of services and medicines across England, taking action to address postcode lotteries and making sure that the quality of care you receive does not depend on which part of the country you live in. We will ensure that NHS patients get fast access to the most effective new drugs and treatments.”
     
    Jonathan Ashworth, shadow Health Secretary, said: “There is a real and growing worry that Theresa May’s ongoing underfunding of the NHS means patients just aren’t getting access to new medicines. Patients need fast access to medicines and treatments which are recommended by Nice as being clinically and cost effective. Labour is committed removing the barriers which are being put in place and to ensuring that NHS patients get fast access to the most effective new drugs and treatments.”
     
    A Conservative spokesman said: “NHS spending on medicines and treatments is now second only to staffing costs – in fact, the NHS in England spent more than £15 billion on medicines last year, a rise of nearly 20 per cent since Labour left office. But we can only ensure more patients than ever get outstanding care if we continue to invest in the NHS on the back of a strong economy – something Jeremy Corbyn and the other parties who’d prop him up in Downing Street simply could not do.”
     
    Liberal Democrat Health Spokesperson Norman Lamb said:  “This is a shameful retreat from the core principle of the NHS, that treatment should be available to patients regardless of their ability to pay.
     
    “The rationing of treatments is an inevitable consequences of this government’s chronic underfunding of the NHS. NHS England is caught between a rock and a hard place because they simply don’t have enough resources.

  • SHCA raises concerns about increasing medicines rationing

    In a letter to the Editors of The Times, members of the SHCA raised their deep concerns with the reforms to NICE and called for all politicians standing for 2017 General Election to commit in their manifestos to reverse these recent reforms.

    The full letter can be found here and has been included below:

    HEALTH REFORMS PLEA
    Sir, We want to see an NHS that provides high-quality care, support and treatment to everyone who needs it — and to ensure that our voice is heard during the general election campaign. In particular, we want all politicians standing for election to know of our deep concern with the reforms to the National Institute for Health and Care Excellence (Nice) that the government and NHS England implemented from April 1. These reforms stand to restrict and ration treatments for people with rare and complex conditions, and were implemented without the agreement of parliament.

    With that in mind, we urge political parties to commit in their manifestos to reverse these recent reforms, and to guarantee that any future reforms will be considered by parliament before being implemented. We also ask that any decisions to restrict the availability of Nice-approved treatments are taken by democratically-elected politicians.
    Deborah Bent, Charity Manager, Limbless Association; David Bickers, CEO, Douglas Bader Foundation; Kay Boycott, CEO, Asthma UK; Roger Brown, Chair, Waldenstrom’s Macroglobulinemia UK; Nic Bungay, Director of Campaigns, Care and Information, Muscular Dystrophy UK; Liz Carroll, CEO, The Haemophilia Society; Tanya Collin-Histed, CEO, Gauchers Association; Ann Chivers, CEO, Alström Syndrome UK; Genevieve Edwards, Director of External Affairs, MS Society; Sue Farrington, CEO, Scleroderma & Raynaud’s UK; Steve Ford, CEO, Parkinson’s UK; Kye Gbangbola, Chair, Sickle Cell Society; Deborah Gold, CEO, National AIDS Trust; Caroline Harding, CEO, Genetic Disorders UK; Tess Harris, CEO, The Polycystic Kidney Disease Charity; Dr Lesley Kavi, Postural Tachycardia Syndrome UK (PoTS UK); Anne Keatley-Clarke, CEO, Children’s Heart Federation; Caroline Morrice, CEO, GAIN; Allan Muir, Development Director and Type II Co-ordinator, Association for Glycogen Storage Disease (UK); Patricia Osborne, CEO, Brittle Bone Society; Jill Prawer, Founder and Chair, LPLD Alliance; Lynne Regent, CEO, Anaphylaxis Campaign; Richard Rogerson, Niemann-Pick UK; David Ryner, The CML Support Group; Timothy Statham OBE, CEO, National Kidney Federation; Laura Szutowicz, CEO, HAE UK; Paddy Tabor, CEO, British Kidney Patient Association; Jeremy Taylor, CEO, National Voices; Oliver Timmis, CEO, Alkaptonuria (AKU) Society; Gabriel Theophanous, President, UK Thalassaemia Society; Sarah Vibert, CEO, The Neurological Alliance; Dr Susan Walsh, Director, Primary Immunodeficiency UK