Date:24 March, 2015

Open Letter on Specialised Services

The Specialised Healthcare Alliance has today sent an open letter to the the PM and other political leaders expressing concerns about the provision of specialised services within the NHS.  Alpha-1 Awareness UK supports the work of the SHCA in improving healthcare support for rare medical conditions such as alpha-1 antitrypsin deficiency.

The text of the letter is:

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 Smith, Turner Syndrome Support Society

Matthew Buckland, UK Primary Immunodeficiency Network

Chris Sotirelis, UK Thalassaemia Society

Colin Dyer, WellChild

John Cowman, Young Epilepsy