New one-stop clinic for Duchenne muscular dystrophy patients a UK first

University Hospital Southampton (UHS) has partnered with Jacksplace, a hospice for young adults, to create the UK’s first one-stop clinic in a joint venture with the voluntary sector for patients with Duchenne muscular dystrophy (DMD).

The specialist clinic, based at Naomi House & Jacksplace in Winchester, runs every other month and combines appointments with different health professionals all in one day – meaning patients won’t need to come into hospital as often to have their condition monitored.

It has been designed specifically to support patients aged 18 and over who are transitioning or have transitioned from paediatric to adult care.

The combined clinic also gives patients and their carers the opportunity to meet and socialise with others as well as engage with palliative care services to address their holistic needs – enabling them to access additional facilities such as complementary therapies.

DMD is a genetic condition that causes a lack of a protein called dystrophin in the muscles which leads to progressive muscle weakness and wasting.

It is a life-limiting condition that affects mainly boys and is usually diagnosed in early childhood – currently there is no cure.

In the UK, around 100 boys are born with DMD each year and there are around 2,500 people living with the condition in the UK at any one time. UHS sees around 30 patients every year with DMD.

Dr Amanda Brain, associate specialist in palliative medicine at UHS and part of the hospice palliative care team at Jacksplace, said: “This idea was formed on the back of a patient focus group created at the hospice looking at how care can be improved.

“One of the key issues that kept coming up was accessing hospital services and the number of appointments these young men have to attend due to the nature of their condition and the many specialties involved.

“It all jumpstarted from there – the whole team could see the potential benefits of a one-stop clinic for everyone.”

The new clinic, which started just as the COVID-19 pandemic hit, offers appointments from across various clinical specialties including neurology, cardiology and physiotherapy all in one-session.

There is also access to a specialist doctor in palliative care who can support with changes in health symptoms and advanced care-planning as well as a specialist care advisor who can provide information about education, employment, housing, mobility aids and social activities.

“Our primary aim is to provide the very best service to these young men by offering a proactive service to help maintain good health rather than just a reactive service during periods when health deteriorates,” explained Dr Brain.

Following each session, health professionals meet to discuss patient cases helping to align care and manage symptoms together.

Suni Narayan, clinical coordinator and specialist physiotherapist at UHS, said: “We’re absolutely delighted that we are able to offer this new service which is going to make such a difference to our DMD patients and their families.

“With the improvement in care in paediatrics, we are seeing more of these young men live into adulthood and they are a relatively new population of patients that adult services are now managing.

“This two-way approach to coordinated care has even more benefits, freeing up clinic time at the hospital as well as reducing hospital admissions. Patients are staying better for longer and living longer and that is the ultimate aim.”

The clinic also involves aspects of the adult North Star Project – a national collaboration of all clinicians in the UK working within the neuromuscular specialty to ensure best practice guidelines are put into place for men with DMD.

Carol Ransome, head of Jacksplace and adult services at the hospice, said: “Working together with UHS is an excellent example of how the third sector can support NHS projects and feed into the NHS Long Term Plan of working together with charities to improve care and services for patients.

"For some, this will be their first experience of the hospice and provides an opportunity for young people to see what services they can choose to access with the potential to breakdown perceptions around hospice care.”

Patients are allocated their own room for the day where all assessments take place, allowing discussions about any health or care issues to be carried out in private.

Ms Ransome added: “It also helps with their long-term planning and provides a softer environment for difficult conversations.”

Patients will still need to attend hospital appointments with the respiratory team as currently the machines used for acute testing are not mobile however this is something the project is hoping to fund in the future.