MP backs fight for Muscular Dystrophy care

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Milton Keynes North MP Mark Lancaster has vowed to back thousands of families across Berkshire, Hampshire, Buckinghamshire and Oxfordshire who are living with muscular dystrophy and related conditions.

Mr Lancaster met with families from the Muscular Dystrophy Campaign’s South Central Muscle Group, which has battled tirelessly for NHS investment in specialist health professionals and vital equipment to support people affected by muscular dystrophy.

He was shocked to hear that £2million is being wasted in the South Central NHS region every year on emergency hospital care for patients with the conditions, which could have been prevented through access to ongoing specialist care at a fraction of the cost. The MP has now pledged to join calls in Parliament to end the waste.

Nearly 5,000 people of all ages in the South Central NHS region live with muscle-wasting conditions, many of which cause severe disabilities and shorten life expectancy. Patients told Mr Lancaster that with GPs and nursing staff struggling to give advice on how to deal with such rare diseases, families are often being forced to cope alone, with the lack of access to specialist information on the conditions taking a heavy toll on patients’ health.

Following years of campaigning by patients and the Muscular Dystrophy Campaign, there are now two part-time specialist neuromuscular care advisors working with patients in the region. However, the charity argues that it is unrealistic to expect two health workers to cover the needs of several thousand patients, and with many still receiving no specialist care, further investment is vital. In what Mr Lancaster has described as a “shocking postcode lottery” in the neighbouring South West NHS catchment, a team of ten specialist neuromuscular care advisors and physiotherapists are available to the 6,000 patients living there.

Patricia Lock from Oldbrook, Milton Keynes, said: “As someone living with muscular dystrophy I am appalled by the lack of specialist care available to people with muscle-wasting conditions in Milton Keynes. We know the difference that the support of care advisors can make both to people’s health and quality of life – having access to proper advice on managing our conditions keeps people off hospital wards. I am delighted that my MP Mark Lancaster is adding his voice to ours and fighting for better care.”

Mark Lancaster MP, said: “These are difficult times financially for the NHS, but here is a clear opportunity to save funds while delivering potentially life-saving care to patients. It is hard for the many hundreds of people in Buckinghamshire living with muscular dystrophy or a related condition to see the South Central NHS waste millions every year on rushing people on to the emergency ward, for the sake of spending a fraction of that amount on giving them the support they so acutely need. I am giving my full backing to the campaign for investment in specialist neuromuscular care.”