Action Duchenne Joins Health Professional Groups in calling for the Health and Social Care Bill to be dropped

By Eilidh

Press Release 31st January 

Action Duchenne has announced its opposition to the Health and Social Care Bill due to be debated again by the House of Lords from 8th February.

The Health and Social Care Bill represents the biggest change to the NHS since its inception, at a time when public health services are facing additional financial challenges.

Action Duchenne claims that the proposed changes and loss of statutory responsibility for neuromuscular services by the Secretary of State for Health and Primary Care Trusts will result in a threat to services for complex, chronic health conditions like Duchenne Muscular Dystrophy. With no legal responsibility to provide the standards of care specified by the National Commissioning for Neuromuscular Conditions, patients with complex illnesses will not be given the continuity and range of care services required.

The charity also claims that the reform will increase competition and impact communication amongst GP providers, resulting in fragmented and delayed services. Treatment of chronic health conditions will also be affected as GPs review prescribing costly new drugs as they face increased pressure to make savings.

Many professional health organisations, including The British Medical Association, the Royal College of GPs, Royal College of Nursing, Royal College of Midwives and Chartered Society of Physiotherapy have already publicly opposed the bill.

Nick Catlin, CEO of Action Duchenne said, “We are calling for the Health and Social Care Bill to be dropped. We believe that it will worsen the current standards of care for people living with complex neuromuscular conditions, preventing the necessary integrated health and social care that complex conditions like Duchenne Muscular Dystrophy require. 

“We have long campaigned for a national coordinated network of specialist centres that people can access, as well as a statutory body to ensure the recommended standards of care are provided. 

Early diagnosis of neuromuscular conditions, referring to specialist centres and the ability to fund clinical trials are all vital to combat this life wasting disease. The new Bill is a recipe for delayed diagnosis and chaotic and disjointed care as the health service looks to reform service delivery and reduce costs.”

Kathy Weddell, mother of a son with Duchenne, and Chair of Action Duchenne’s National Advocacy Council said,

‘Our GP has never had a patient with Duchenne before – when we were first worried about Isaac and I took him to the GP he said ‘run around the park with him a bit more’. Isaac’s care is provided by the excellent well-co-ordinated NHS team based at the local children’s hospital. I don’t want our GP sending us to cut-price competitors, with eleven different specialists in maybe eleven different locations, with no guarantee of a team working together or any continuity over time, and those competitors would inevitably undermine the provision we’ve already got. The real cost of all this won’t just be the extra millions wasted in emergency hospital admissions, it’ll be the life of my son and thousands like him.’