NHS and third sector come together to support young adults with DMD
Before the clinic, I had to go to separate appointments on different days and wait for hours each time. It was tedious, repetitive and boring. The process is so much easier now and a lot more comfortable. I like that it’s at Jacksplace because it’s a lot more familiar and chilled out.
Jacksplace has recently partnered with University Hospital Southampton (UHS) to create the UK’s first one-stop clinic for young adults with Duchenne Muscular Dystrophy (DMD).
Duchenne muscular dystrophy is a genetic condition, 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.
The specialist clinic is based at Jacksplace and allows young adults with DMD to combine the majority of their annual appointments all into one day, to discuss and monitor their condition. This results in less hospital visits, freeing up space at the hospital.
Josh, who attends the clinic and has visited Jacksplace since it opened, shared his thoughts about the new clinic:
Rather than going to the hospital a lot for different appointments, they’ve brought them all together in one place. Before the clinic, I had to go to separate appointments on different days, wait for hours each time and sort out parking – it was a lot of back and forth which was very tedious, repetitive and boring. The process is so much easier now and a lot more comfortable. It doesn’t feel rushed – it feels like there’s more time for us at the clinic, which gives me time to process what’s happening and ask the questions I want to ask.
It’s also good to meet with others and share similar experiences. Sometimes you can be struggling with something and if you just mention it, you realise someone else is going through it too. I like that the clinic is at Jacksplace because it’s a lot more familiar, chilled out and a calmer environment and it doesn’t feel like a hospital.
The new clinic, which supports young adults aged 18 and over with DMD, offers appointments from across various clinical specialties including neurology, cardiology and physiotherapy, all in one session. It also gives attendees the chance to meet and socialise with others in similar conditions, and access facilities and additional services at Jacksplace. There is also access to Jacksplace’s 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.
The clinic 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.
Dr Amanda Brain, part of the hospice palliative care team at Jacksplace and Associate Specialist in Palliative Medicine at UHS, said:
The idea for the clinic 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 fact that the NHS and the third sector worked together to create this clinic as the COVID-19 pandemic hit is incredibly impressive and shows everyone’s dedication to providing the very best service to these young men. The primary aim is to offer a proactive service to help maintain good health, rather than just a reactive service during periods when health deteriorates.
Following each session, health professionals meet to discuss patient cases, helping to align care and manage symptoms together. In a world where health care professionals often aren’t able to work together in this manner, resulting in young adults and families to feel their care is disassociated, this is a huge benefit to the clinic.
Carol Ransome, Head of Jacksplace and Adult Services, 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. It also helps with their long-term planning and provides a softer environment for difficult conversations.
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.
Neuromuscular clinic featured on ITV Meridian
We are delighted that ITV Meridian recently gave a spotlight to our pioneering neuromuscular clinic as the lead feature on the evening news. Click here to watch the broadcast and read the online story.