Stephen  has joined MPs and Peers in backing a new report released yesterday by the All Party Parliamentary Group (APPG) for Muscular Dystrophy. The report investigated access to specialist care and new treatments for patients living with devastating and life-limiting muscle-wasting conditions. It found NHS England has failed families with these rare conditions as a result of gaps in care, support and treatments they desperately need. This is a result of the confusion caused within the NHS by a lack of clarity over whether services are funded locally or nationally. 

Stephen Timms MP, alongside the APPG for Muscular Dystrophy, is calling on the Government and NHS England to: 

  • Develop a fast and streamlined process for making funding decisions on treatments for rare diseases 
  • Fund vital respiratory equipment for people affected by muscle-wasting conditions 
  • Allow access to essential services, such as specialist physiotherapy, for people with severe muscle-wasting conditions 
  • Issue guidance to provide clarity on which services are funded by the local NHS, and which are funded nationally

Stephen said: “I am pleased to support the recommendations in this powerful report. I was concerned to hear from people affected by muscle-wasting conditions at the launch about the difficulties and delays that they have faced in accessing new treatments and specialist care and support in the local area.” 

Nic Bungay, Director of Campaigns, Care and Information at Muscular Dystrophy UK, said:
“We greatly appreciate the support of Stephen Timms for this landmark report. This inquiry is a major step in the right direction, highlighting issues that need to be addressed urgently. We urge the Department of Health, NHS England and organisations named in the report’s recommendations to take quick and effective action to speed up access to treatments and improve access to specialist care for people with muscle-wasting conditions.”

AuthorStephen Timms