Chelmsford MP Simon Burns has joined MPs and Peers in backing a new report  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.

Simon Burns joined forces at the launch of this hard hitting report with MPs, Peers and families of those with muscle-wasting conditions.

The report 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.

Simon Burns MP, alongside the APPG for Muscular Dystrophy, is calling on 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

Simon Burns MP said: “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 their region.”

Nic Bungay, Director of Campaigns, Care and Information at Muscular Dystrophy UK, said: “We greatly appreciate the support of Simon Burns 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.”