SHCA signs #PatientsTogether letter to The Times

The Specialised Healthcare Alliance has joined other patient representative organisations in signing a letter to the editor of The Times newspaper calling for NHS England to communicate its prioritisation decisions respectfully to all.

The letter is as follows.

“Sir, Over recent weeks, we have been alarmed by the “divide and rule” tactics used by NHS England when communicating which new treatments it will make available to patients.

These funding decisions affect the lives of people with a range of rare or complex conditions. As organisations representing the patients who would benefit from these treatments, we are concerned by NHS England pitting the interests of one patient group against another in its press statements. All patients and all conditions matter.

In the light of this week’s High Court hearing about the HIV prevention drug, PrEP, NHS England will soon look again at which treatments it will fund.

We understand the NHS must make difficult choices. All we ask from our national health service is to adopt an ethical and transparent approach in taking these decisions and to communicate them in a way that is respectful to the people who are affected by them.

Jeremy Taylor, chief executive, National Voices
John Murray, director, Specialised Healthcare Alliance
Ian Green, chief executive, Terrence Higgins Trust
Steve Ford, chief executive, Parkinson’s UK
Sally Light, chief executive, Motor Neurone Disease Association
Philip Lee, chief executive, Epilepsy Action
Charles Gore, chief executive, Hepatitis C Trust
Menai Owen-Jones, chief executive, The Pituitary Foundation
Roger Brown, chair, Waldenstrom Macroglobulinemia UK”