First comprehensive patient survey launched to better understand DMD care across the UK
6 May 2021
DMD Care UK have launched the first comprehensive patient survey aiming to understand Duchenne muscular dystrophy (DMD) patients’ and caregivers’ experiences of medical care.
DMD Care UK, a joint initiative funded by Duchenne UK, Joining Jack and the Duchenne Research Fund, aims to ensure that everyone living with DMD has access to the best care. In collaboration with the John Walton Muscular Dystrophy Centre and the North Star Network, the project will bring together expert working groups and the patient community to agree and implement care recommendations across hospital sites in the UK.
Guidelines for the care of DMD patients, known as the International Standards of Care, were published in 2018 by a respected medical journal called The Lancet Neurology. Whilst this was an important step forward, families realised there was often a gap between the care they should be receiving and the care they actually received.
That’s why DMD Care UK has launched this essential survey which will help us to understand how DMD care is being delivered across the UK.
This will allow the working groups to gain a clear picture of care across the country, so we know where the gaps are, where standards differ between centres, and what we need to do improve care for all.
In three years’ time, we will repeat the survey to measure the difference that the DMD Care UK project has made.
We believe that receiving the highest standard of care should not be a postcode lottery. By taking part in the survey, those affected by DMD will have their voices heard, no matter where they live in the UK.
If you live with DMD in the UK or are a parent or caregiver to someone who does, please take part in the survey today. With your help, we can work to transform care and increase the health, quality of life, and life expectancy for all DMD patients.
Watch the video below to understand how the DMD Care survey will make a difference:
The survey will be open from 6 May – 28 May 2021. Please note that it will take approximately 25 – 45 minutes to complete. You can take a break and return to the survey at any point as your answers will be saved in your browser.
To take part, you must be a patient, or parent/caregiver of a person with Duchenne muscular dystrophy and receive your main neuromuscular care in the UK. Anyone who completes the survey will have the option to be entered into a raffle for a £50 Amazon gift card.
If you would prefer to fill out the survey over the phone, please email Philippa Farrant from the Duchenne Family Support Group (DFSG) or call the DFSG helpline on 0800 121 4518 to arrange an appointment.
Thank you to the DMD Care UK Family Focus Group who helped with the preparation of this survey, and to the following organisations: Duchenne Family Support Group, Duchenne Now, Smile with Shiv, Alex’s Wish, Pathfinders Neuromuscular Alliance, Decipha.