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