Hornsey and Wood Green MP Lynne Featherstone has tabled a motion in Parliament calling on NHS bosses in London to improve the care and support for patients with rare illnesses.

According to families with rare illnesses, who are joining forces to launch the ‘London Muscle Group’, patients living with muscle disease in the capital are facing battles to access vital services such as physiotherapy.

A clinician led report published by the Muscular Dystrophy Campaign also highlights the lack of Muscular Dystrophy Care Advisors, who support and advise families affected by the condition, for the 7,400 children and adults living with muscle disease in London.

Commenting on the new Early Day Motion she has tabled in the House of Commons, Lynne Featherstone said:

“It is totally unacceptable that many of the 7,500 people living with muscular dystrophy in the capital are forced to go without the vital services they need.

“Local NHS decision makers must recognise the specialist nature of the care needed by patients with muscle disease and ensure that such services are available to all patients living in the capital.”

One of Lynne Featherstone’s constituents, Rosemary Lawy from Muswell Hill, who has muscular dystrophy and who attended a meeting in Parliament to discuss the report, said:

“As a London patient myself, I do not receive any hydrotherapy – a service which I know helps to keep me and many people with muscular dystrophy fitter and more mobile – as well as helping us take control of our condition.

“All people living with muscle disease in London also deserve the support of a Muscular Dystrophy Care Adviser, if they need one. It’s shocking that there is only one Care Adviser in the capital who only sees children – meaning that there are many adults with the condition who feel completely abandoned.

“It’s alarming that there is not better provision of care for the 7,500 patients with muscle disease in London. I am adding my voice to the call for a thorough review of neuromuscular services across the capital.”

Director of Policy at the Muscular Dystrophy Campaign, Robert Meadowcroft, said:

“With the backing of Lynne Featherstone MP, we are calling on the NHS to carry out a full review of neuromuscular services in across London as a matter of urgency.”

These results come four years after the Government’s National Service Framework for Long Term Conditions, which pledged to improve quality of life and independence for people living with chronic conditions.

Notes:

The Muscular Dystrophy Campaign is the leading UK charity focusing on muscle disease. It has pioneered the search for treatments and cures for 50 years, and is dedicated to improving the lives of all people affected by muscle disease. It funds world-class research to find effective treatments and cures; provides free practical and emotional support; campaigns to raise awareness and bring about change and awards grants towards the cost of specialist equipment.

The Parliamentary motion tabled by Lynne Featherstone MP reads:

That this House welcomes the launch of the London Muscle Group; notes that the new group will campaign to improve access to essential specialist care and support for patients living with muscle disease, also notes that the Group is led by local families and people affected by Muscular Dystrophy and other related Neuromuscular conditions; is concerned to learn of the serious problems that the 7,500 people with muscular dystrophy and related neuromuscular conditions face living in London; further notes that access to multi-disciplinary specialist care improves overall health outcomes and survival for patients with muscular dystrophy and related neuromuscular conditions; calls on the London Specialised Commissioning Group, Local Primary Care Trusts and the Strategic Health Authority to take forward a review of neuromuscular services which will identify areas of best practice and gaps in NHS service provision; and praises the campaign led by the Muscular Dystrophy Campaign, local families, health professionals and experts in these conditions who will work together to fight for good access to clinically effective, first class, specialised neuromuscular services across London.

Key findings from the Muscular Dystrophy Campaigns Building on the Foundations in London reveal:

• Specialist clinics in London do not have the capacity to serve the 7,500 people living with muscle disease in the region, as well as the many others who travel from other regions and countries, for specialist services.
• One in four patients in the region currently has no access to a neuromuscular specialist and receives no specialist care.
• Young adults need greater support moving from child to adult services. Many patients frequently receive wholly inadequate support at transition and throughout their adult lives.
• There are limited psychology services for neuromuscular patients despite its importance as part of multi-disciplinary care for patients with diseases with no known cures and only limited treatments available.