News Archive

Archive of: 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

  • SHCA sends letter to the Prime Minister on restricting and rationing treatment

    30 members of the SHCA have sent a letter to the Prime Minister raising the alarm about restrictions and rationing of treatment because of underfunding, especially for patients with rare and complex conditions

    The letter was covered in the Observer newspaper. The article can be found here and is included below:

    Charities call for NHS to stop rationing critical care

    Theresa May has been urged by charity chiefs to stop the NHS rationing treatment for seriously ill patients and to find more money for their care in the budget next month.

    About 30 health charities, including the Teenage Cancer Trust, National AIDS Trust and Motor Neurone Disease Association, have raised the alarm about NHS England “restricting and rationing treatment” because of underfunding, especially for patients with rare and complex conditions. The groups from the Specialised Healthcare Alliance said this rationing is taking place without sufficient public scrutiny.

    In a letter to the prime minister, they said NHS England is “choosing to restrict and ration treatments that patients with rare and complex conditions need – often without proper consultation with patients”. “We hope that you will take action to ensure full patient involvement in these decisions, and to ensure that any decision to ration treatment is overseen by democratically elected politicians,” they added.

    The warning comes after health thinktank the King’s Fund said that politicians would be escaping culpability for rationing decisions, as plans due to come into force from April mean that even cost-effective treatments could be denied to patients.

    Nicholas Timmins, a policy adviser at the organisation, wrote: “If the NHS can no longer fund new and cost-effective treatments, ministers should announce that decision case by case, and be held accountable for so doing”.

    It emerged last month that cancer, diabetes and asthma patients could all be hit by the new affordability criteria, which means that drugs which cost the NHS more than £20m in total each year could be subject to restrictions.

    The charity chiefs also raised wider concerns about funding for the NHS, which medics have said is under huge pressure this winter because of cuts to adult social care provided by councils.

    Philip Hammond, the chancellor, is facing calls to give more money to the NHS next month after resisting an emergency bailout at the autumn statement. Instead, the government has launched a long-term review of social care and will allow councils to raise more through a local ‘precept’ (an extra charge to council tax bills which can only be used for adult social services) in the next couple of years.

    No 10 and the Treasury appear to remain firmly against repeated calls from medics and the opposition for more cash for the NHS, indicating they are not prepared to change tack at the budget. But the charities say: “Our charities – and the patients we represent – are deeply concerned by the recent statements of Simon Stevens concerning the NHS’s relative underfunding. We urge you to ensure that this year’s budget provides the NHS with the funding it needs to deliver the standards of care patients expect.”

    The charities issued their warning ahead of a Lords debate on the medical supplies bill this week, which Labour’s shadow health minister Lord Philip Hunt has described as a missed opportunity to “get rid of many of the restrictions on NHS patients using innovative new medicines”. A government spokesman said blanket restrictions on treatment are unacceptable and that the clinical needs of a patient, and the urgency with which they require treatment, must come first.

    “The government is responding to the needs of the NHS by investing more money – £4bn this year – to fund its own plans for the future”.