Lancashire Teaching Hospitals and Manchester Metropolitan University are collaborating to research the impact of, and help to unlock access to, hydrotherapy for boys and young men with Duchenne Muscular Dystrophy (DMD).
Having secured funding from Duchenne UK, the Trust – whose Paediatric Neuromuscular Service recently received a prestigious Centre of Excellence award from Muscular Dystrophy UK – aims to demonstrate that hydrotherapy can benefit the mobility of DMD patients and help towards a better quality of life.
It is also hoped that the relationship between the Trust’s Dr Christian de Goede, Consultant Paediatric Neurologist and Candiss Argent, Paediatric Research Physiotherapist, and Manchester Metropolitan University’s Dr Christopher Morse, Reader in Exercise Physiology, will lead to further opportunities to work together.
Hydrotherapy is generally recommended for everyone with DMD; however, more evidence is required to show it benefits mobility. The cruel irony is, that the lack of evidence means there is a lack of provision across the UK for DMD patients to access hydrotherapy.
The new trial will last 24 months and Dr de Goede, the lead researcher said: “Despite ongoing research, there is still no cure for DMD. However, there is a lot we can do to help and improve the lives of these boys and men. We believe hydrotherapy can make a difference and our aim is to provide evidence for this. This will help to support the development and access to hydrotherapy which currently is very limited.”
Dr Morse added: “The whole point of this is to provide evidence that spending money on this is worthwhile. Patients do feel better, although to get evidence that can convince someone to spend millions of pounds, is really tricky. You struggle to recruit due to the lack of pools, and there is a lack of pools because there is no evidence. Hopefully this money from Duchenne UK will help start that process.
“Christian is completely motivated towards giving these children something, that isn’t a cure but could make their lives better. With Candiss as well, it’s such an amazing team and I want us to keep working together.”
That is something Candiss wholeheartedly agrees with: “What this study has brought to Lancashire Teaching Hospitals, is a really strong working relationship with MMU. There is potential for a lot of opportunities in the future, also with Duchenne UK supporting us. We’ve had to go and make connections with local charities as well. Some really positive things have come from strong collaboration.”
Care standards for people with DMD are increasing, those with DMD are living longer, and Candiss believes the focus should widen to making sure they are living a meaningful and happy life: “The study is not just about the physical benefits, it’s the outcome measures of participation and quality of life.
“We’ve had all these amazing medical advances within the neuromuscular world in general, but the therapeutic element needs to come in then and we need stronger, more robust evidence to back what we’re doing as physiotherapists.”
Patients involved in the trial are required to travel to Rochdale to access a hydro pool, as Candiss explained: “There is a lack of pools and lack of accessibility to the pools as well, so we are really lucky to be working with the Jolly Josh charity in Rochdale. We are using their hydro pool, which is fully accessible with an electronic hoist, appropriately sized slings and private changing facilities.”
She believes the benefits go beyond the physical aspect: “Some of the boys are terrified of the water, because they’ve never had the opportunity to learn to swim. By the end of the sessions, their confidence has drastically increased, and they are making eye contact and laughing and joking, where before they might have been quite withdrawn.
“Regardless of what the study finds, what we all know is exercise is good for us, that is well-established for anybody. For anybody with physical disability, exercise on land can be challenging, but particularly for boys with Duchenne, because their mobility reduces over time.
“But if they come into a pool, they are completely safe because they won’t fall, and for those who are non-ambulant, to get them in a standing position and feel they can move with ease, the emotional benefits are brilliant.”
To find out more about what the Jolly Josh Charity do, please visit their website https://jollyjosh.co.uk/ The charity provides excellent care for families with children with complex needs. Access to hydrotherapy is a benefit that those who engage in their support services can access.
