State of the Nation - National Patient Survey
In September 2008 our national survey revealed that families with rare illnesses are experiencing severe financial hardship and many are seeing loved ones’ lives drastically shortened due to a lack of specialist care.
Launched ahead of Muscle Awareness Week, our survey report, State of the Nation, reveals that patients are losing out in a postcode lottery and are being denied essential health and social care services. Individuals are being forced to pay for their own wheelchairs and many family members have to provide full time care for years without any respite.
The survey of almost 1,000 patients and families revealed:
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more than 50% have funded their wheelchair out of their own pocket or from charity grants
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just over 50% of patients have no access to a specialist neuromuscular consultant
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more than 75% of carers don’t have any access to respite care, such as a hospice or care home
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more than half of people with muscle disease of working age are not in employment
These results come 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.
The charity is now calling for additional key workers or care co-ordinators for families living with muscle disease, as well as urging NHS Commissioning Groups to conduct urgent reviews of local services.
Patients report lack of care and financial hardship
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