Trailblazers joined MPs and Peers at the Houses of Parliament where an Inquiry into access to NHS specialist care for people living with rare conditions was launched today.
The Inquiry, being undertaken by the All Party Parliamentary Group for Muscular Dystrophy (APPG) will focus on access to specialist multi-disciplinary care; commissioning and funding; workforce planning and the role of care co-ordinators.
A recent patient survey of 1,000 people revealed that half of patients with muscle disease rate their experience of the diagnosis process as poor; while over 50% of patients have no access to a specialist neuromuscular consultant. There are 60,000 people in the UK with muscular dystrophy or a related neuromuscular condition.
The APPG includes Lord John Walton, ex-president of the British Medical Association and the General Medical Council, as well as Baroness Celia Thomas, front bench Opposition Spokesperson, who has limb girdle muscular dystrophy.
Over the next six months, the Group will seek evidence from:
- health and social care professionals
- scientists and researchers
- specialised Commissioning Groups across England
- officials from the Department of Health
- professional bodies
- the Neuromuscular Centre in Cheshire
- representatives from the devolved countries
The Inquiry comes three years after the introduction of 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.
On the panel at today’s first oral evidence session, was Professor Mike Hanna, Consultant Neurologist at the Institute of Neurology, London; Dr David Hilton-Jones, Consultant Neurologist at the John Radcliffe Hospital, Oxford; Michelle Eagle, Consultant physiotherapist at the Newcastle Muscle Centre and Dr Stephen Lynn, Project Manager for Treat NMD, Newcastle.
Commenting on the Inquiry, Chair of the Group Dave Anderson MP, said:
“It’s shocking that so many families living with muscular dystrophy are not getting the care they need.
“This Inquiry will uncover gaps in service provision; and the immediate steps that need to be taken in order to improve care received by families and patients.”
Providing oral evidence, Dr David Hilton-Jones, Consultant Neurologist at the Oxford Specialist Muscle and Nerve Centre, said:
“I hope that the MPs and Peers listening to today’s evidence will understand the importance of patients receiving multi-disciplinary care provided by specialist centres such as Oxford.
“Too often people living with muscle disease are denied access to this kind of specialist care, advice and support.”
The APPG is calling on interested parties to submit evidence by February 2009. In order to submit evidence, please visit the Muscular Dystrophy Campaign
The APPG investigation follows a number of hard hitting reports published by the Muscular Dystrophy Campaign, which reveal that life expectancy and quality of life is being seriously affected by a ‘postcode lottery’ in service provision.