A cross party group of MPs and Peers have launched an inquiry into access to NHS specialist care for people living with rare conditions.
The inquiry, being undertaken by the All Party Parliamentary Group for Muscular Dystrophy (APPG) will focus on access to specialist multidisciplinary care; commissioning and funding; workforce planning and the role of care co-ordinators.
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 are being seriously affected by a "postcode lottery" in service provision.
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 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.
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.”
The APPG is calling on interested parties to submit evidence by February 2009. In order to submit evidence, please visit: