Steve backs patients’ concerns over shocking gaps in care

Steve McCabe has vowed to back patients affected by devastating muscle-wasting conditions in their fight for specialist services, which they say would change lives and save the NHS money.


Steve McCabe has signed a motion in Parliament* calling for the NHS to implement guidelines for care and support for people with muscle-wasting diseases and called on the new NHS Commissioning Board to support the development of networks across the country with a view towards reducing costly unplanned emergency admissions to hospital.


The motion in Parliament welcomes the State of the Nation report published by the Muscular Dystrophy Campaign today showing that patients with muscle-wasting conditions are concerned that some regional NHS groups have put up barriers and caused delays to investing and improving services for people with muscle wasting conditions, and that specialist health professionals might be restricted by NHS geographical boundaries in providing the necessary care and support. Coupled with this is unease that GPs will have more control over planning local services.

The Muscular Dystrophy Campaign’s report showed that:

-        Patients continue to experience long waits for a correct diagnosis, with less than half of people receiving a diagnosis in under a year and nearly   one-in-six having to wait over 5 years for their diagnosis.

·         More than one-third of patients reported their condition had been initially misdiagnosed.

·         Worryingly, over a third of people were uncertain whether their GP had offered the correct advice and fewer than half felt that the advice was correct.

·         Over a quarter of patients also reported that they were forced to wait more than 12 months to see a specialist consultant, after they had been diagnosed with a neuromuscular condition. 


Commenting on the report, Steve McCabe MP said:


“I was shocked to read the findings of the Muscular Dystrophy Campaign’s Patient Survey. I am concerned that too many patients and families affected by muscle-wasting conditions in the UK are receiving poorly co-ordinated care which can not only result in unnecessary use of NHS resources but can also have serious implications for a patient’s life expectancy and quality of life.”


The Muscular Dystrophy Campaign’s Director of Campaigns, Care and Information, Nic Bungay, said:


We are delighted to have the support of Steve McCabe MP backing patients’ calls for improvements to specialist care, who is a powerful voice for people with muscle-wasting conditions in Birmingham.


The Muscular Dystrophy Campaign is now calling for:

 - Clinicians and the NHS to ensure children and adults with severe muscle-wasting conditions, who have associated respiratory and cardiac issues, should have their heart and lungs checked regularly at a muscle centre or a clinic that has appropriate expertise from a specialist multi-disciplinary tea

- The NHS to ensure a faster diagnosis for both adults and children with symptoms of a muscle-wasting condition, with families supported by specialist, multi-disciplinary teams of health professionals accessible within their local area

- GP-led Clinical Commissioning Groups to work with specialist neuromuscular clinicians, regional NHS leaders and people affected by these conditions to ensure that (a) the warning signs are picked up sooner and (b) appropriate care and support arrangements are in place locally

- Recognition by the NHS that investment in specialist care can dramatically reduce unplanned admissions and save money, by keeping people out of hospital

- New guidelines  on neuromuscular services set to be published by the NHS on the treatment and care of people with these conditions to be implemented as soon as possible.

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