Many of you will be aware that we have raised some concerns, alongside other charities about the likelihood of restricting NHS treatments for people with Alström Syndrome and other rare complex diseases.
Alongside about 30 other health charities from the Specialised Healthcare Alliance, we voiced our concerns and signed a letter addressed to the Prime Minister, Theresa May detailing the impact that these new measures would have on rare and complex health conditions. We have today received a letter from Theresa May stating that NHS England have confirmed that it is NOT restricting treatments.
We will be ensuring that NHS England do what they say – follow on twitter #patientsneedtobelistenedto
You can find out more about this campaign via the Guardian newspaper who have written an article ‘Charities call for NHS to stop rationing critical care’ https://www.theguardian.com/society/2017/feb/18/charities-stop-nhs-rationing-critical-care
Please circulate this letter to your family, friends and supporters.