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5 January 2013

I was encouraged to see Myasthenia gravis covered by the British Medical Journal’s ‘Easily Missed’ series (21st December 2012). As with many neuromuscular conditions, the rarity of Myasthenia gravis and the nature of the symptoms presented means the condition is frequently misdiagnosed.
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Further, I would like to draw the attention of readers to the range of services that the Muscular Dystrophy Campaign offers to patients affected by Myasthenia gravis. A primary focus of the charity is to provide practical and emotional support, alongside sign-posting to specialist care for the 9,000 people in the UK living with the condition.
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The Muscular Dystrophy Campaign's Care and Information team work to support patients in coping with the feelings of anxiety, confusion and helplessness that can come with a diagnosis of Myasthenia gravis, and to introduce them to local networks of those also affected. The charity offers a dedicated helpline for those newly diagnosed, as well as factsheets and guides on the ongoing management of the condition. The charity’s advocacy service - backed on a pro bono basis by a leading law firm – also guides patients and families on addressing any barriers to vital care and assistance.
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The charity is a leading campaigning voice for increased NHS investment in specialist neuromuscular care for patients and expert primary care – essential in aiding GPs to provide accurate advice of the best possible care options.
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The impact of a lack of ongoing, specialist support is clear. An audit published in 2012 of unplanned emergency admissions of 395 neuromuscular patients, led by Professor Michael Hanna, Consultant Neurologist and Director of the Queen Square Division of UCLH, revealed that over one fifth of patients admitted were affected by Myasthenia gravis. The Hanna audit shows avoidable hospital admissions for these patients are often down to a lack of co-ordinated, specialist care, as well as patients not having emergency care plans.
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We are working closely with NHS specialised commissioners to ensure NHS reform brings about positive change for patients with Myasthenia gravis and other muscle-wasting conditions. We are delighted that a draft neuromuscular service specification is now out for consultation. This sets out for the first time the care that patients with Myasthenia gravis and other muscle-wasting conditions can expect to receive; and we expect the NHS National Commissioning Board to ensure these services are delivered across the English regions.
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We hope that health professionals continue to highlight the support provided by the Muscular Dystrophy Campaign to those affected by Myasthenia gravis and other muscle-wasting conditions. Visit www.muscular-dystrophy.org to find out more, or call our freephone information line: 0800 652 6352.

Competing interests: None declared

Robert Meadowcroft , Chief Executive

Muscular Dystrophy Campaign , 61 Southwark Street, London, SE1 0HL

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