MPs to investigate access to specialist care for rare conditions

A cross party group of MPs and peers have launched an inquiry into access to specialist care for people living with rare conditions.

The inquiry, being undertaken by the All Party Parliamentary Group for Muscular Dystrophy, will focus on access to multi-disciplinary care, commissioning and funding, workforce planning and the role of care co-ordinators.

The investigation follows a number of 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.

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 half of patients have no access to a specialist neuromuscular consultant.

Over the next six months the group will seek evidence from patients and their families as well as health and social care professionals.

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