Improving care and clinical trials for adults with Duchenne muscular dystrophy

Published Date
11/08/2017
Author
Lloyd Tingley
Category
Care & Support

As part of our Duchenne Dialogue series Muscular Dystrophy UK are holding an event on improving healthcare for adults living with Duchenne muscular dystrophy. The event will bring together health professionals, adults affected by Duchenne and representatives from pharmaceutical companies, opening conversations on improving care and research.

By bringing these groups together we’re aiming to ensure that adults with Duchenne are able to receive the highest quality healthcare, as well as better tailoring future trials and treatments to their needs.

Vivek Gohil (pictured with family and Mary Glindon MP) is 27 and has Duchenne muscular dystrophy, Vivek is attending the consultation meeting and below discusses his care exerpeinces and hopes for the future:

I’m excited to attend the Muscular Dystrophy UK’s Adult North Star Network’s consultation event in London on October 27th. This event is crucial for adults living with Duchenne as it aims to provide best practice guidelines that are currently non-existent, regarding cardiac, respiratory, neurology, transition and other specialist care.

Dialogue between leading health experts, representatives from the pharmaceutical industry and patients will hopefully drive these new guidelines to be adopted (in 2018) by specialist neuromuscular centres, community health professionals, physiotherapists and GPs.

Personally, in Leicester, there have been improvements to respiratory physiotherapy care; I have received community physio and a vital new cough assist machine. However, cardiac provisions are lacking as 6 monthly appointments are inadequate and it is difficult to get a response from the department over the phone in an emergency. Neurology services are deficient as muscular dystrophy is only an integrated part of the much larger Stroke Services. My GPs are good, they make referrals quickly and visit me at home however, many GPs do not specialise in Neuromuscular diseases so are less knowledgeable about DMD.

So the Muscular Dystrophy UK’s Adult North Star Network’s consultation aims to through standardised care guidelines to prevent the problems I faced occurring in the future care services for Duchenne muscular dystrophy. Every region needs a North Star Network so that inter-departmental collaboration during an appointment creates an environment that monitors your cardiology, respiratory, neurology (or other departments) holistically.

I’m looking forward to having an input in this consultation as it will benefit Muscular Dystrophy UK to reach the horizon of better care provisions for Duchenne muscular dystrophy.

You can join in the conversation with Vivek at the event at the Hilton Bankside on the 27th of October to share your views and support care improvements for adults living with Duchenne. Book your place today by contacting Lloyd Tingley at l.tingley@musculardystrophyuk.org or on 020 7803 4804.

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