Wednesday 10 December 2008
Parliament to probe "shocking" lack of care
A cross party group of MPs and Peers has launched an Inquiry into access to NHS specialist care for people living with muscular dystrophy.
The Inquiry is being undertaken by the All-Party Parliamentary Group (APPG) for Muscular Dystrophy. It will focus on access to specialist multi-disciplinary care; commissioning and funding; workforce planning and the role of care co-ordinators.
The Inquiry follows 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.
The APPG is chaired by Dave Anderson MP and also 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, and Dr Hywel Francis MP, Secretary of the APPG and Chair of the Welsh Affairs Committee.
Over the next six months, the Group will seek evidence from:
- patients and their families
- 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
On the panel at today’s first oral evidence session were: 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 APPG 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.
Chief Executive of the Muscular Dystrophy Campaign, Philip Butcher, said:
Families and patients from across the UK are delighted that the All-Party Group has decided to launch this important Inquiry.
The urgency of this Inquiry is underlined by the lack of a NICE guideline for muscular dystrophy and related muscle diseases.
We hope that the Government and NHS commissioners across the UK sit up and take note of the group’s forthcoming recommendations.
The APPG is calling on interested parties to submit evidence by February 2009. In order to submit evidence, please see the documents below.
APPG for Muscular Dystrophy Inquiry - Call for Evidence
