Rehab professionals can help you work out ways of dealing with some of the common problems MS can cause and support you to draw up practical goals for living the way you want to. On these pages some of the UK’s leading experts talk about how MS rehab has changed over the years and how it can help you today.
“I started my work in MS in the early 80s,” says Professor Alan Thompson, one of the world’s leading authorities on MS, and the founder of the Neurorehabilitation Unit at the National Hospital for Neurology and Neurosurgery in London. “This was in the days before MRI scans, before MS treatments. A lot of my research then, as it is now, involved people with progressive MS, who I would see every couple of weeks. I saw them getting worse and nobody really doing anything to help.”
“So my commitment to rehab in MS was about trying to manage this progression. An opportunity arose in 1990 to take on the rehabilitation programme at the National so that’s when I started establishing the modern service. It had a long gestation. There was a small rehab unit in woodlands in East Finchley at the time. This was the old concept of rehab: something done by someone else, somewhere else, in a leafy, relaxed place. I wanted to make rehabilitation much more rigorous: I wanted to introduce research and measurement. And that meant bringing people who needed rehab right into the heart of Queen Square. We eventually took over an entire wing of the hospital.”
The rehab unit Professor Thompson set up now consists of a multidisciplinary team, including a neurologist, physiotherapist, occupational therapist, speech therapist, psychologist and rehabilitation specialist nurse, who work together to help people with MS and other neurological conditions such as cerebral palsy or stroke.
“We work to help people maintain the best possible quality of life,” says Professor Thompson. “It’s an educational process, that’s a key point. It’s not a therapy process. It’s an education process where you support people to take on responsibility for their own health.”
Managing day-to-day issues
The unit is now led by Dr Diane Playford. “I always wanted to work in rehab,” says Diane. “The very first patient I worked with when I was a student had very bad rheumatoid disease. He told me he could deal with the disease, but he couldn’t deal with the thought of his wife having to clean his bottom for him. The OTs worked with him to solve that problem and I was very struck by that. For me it was a story about the impact disability has on people’s day-to-day lives.”
So what does rehab practically mean for people with MS? “It’s about managing day-to-day issues. I’m particularly interested in supporting people to remain in work. Although it doesn’t always feel that way, work is actually good for us. I wouldn’t want to make grandiose claims for rehab but I think we can do things to help people retain their jobs.”
Jenny Thain is Clinical Specialist Physiotherapist at the Walton Centre, a specialist neuroscience NHS Trust in Liverpool, where she’s been instrumental in setting up their support programme for people with MS. “We see patients from when they’re newly diagnosed right the way through their MS. Many people think of rehab as being admitted to a ward. But it can be any help or support that we give people: we give them advice, perhaps exercise programmes that they can then carry on and do themselves. That’s still active rehab.
“There has been a change in rehab over the years,” says Jenny. “In the past it was seen as something for people with severe disability. But now we’re encouraging people to get rehab much earlier. We focus on self management very early on, and then help people dip in and out of more formal rehab services as they need to.
“With our newly diagnosed patients we look at things like posture, health and general wellbeing, cardiovascular fitness. We encourage people to get into a regular routine of activities they enjoy to maintain their general health. We also try to pick up on more subtle difficulties like posture or mild spasticity, so we can focus on that early. Fatigue is obviously a big symptom and a lot of our early patients have problems with that, so we give fatigue management advice.”
Raising the profile
It’s clear that we need to raise the profile of rehab and how it can help people with MS. “There’s still quite often a certain level of ignorance about what is possible,” says Professor Thompson. “But I have never ever met anybody where there wasn’t something we could do to improve their situation one way or another.”
But raising the profile remains a challenge. “I think we need to raise the profile of rehab full stop, across the boards – never mind just with MS,” says Dr Playford. “It is absolutely right that money goes into the front end, to modify disease, prevent disease and treat disease. But rehab tends to get thought about afterwards. I think we need a culture shift across the UK. If you look at our ageing population, if we accept the experiences we will all have to a greater or lesser extent, what we need to do is embed rehab in the whole of healthcare.”
The MS Trust is co-hosting RIMS (Rehab in MS) 2014 this summer. This European conference offers neurologists, MS nurses, therapists and other rehab professionals the chance to hear the latest research and practice on how to help people living with MS to lead full, active lives. Professor Thompson himself will be delivering the RIMS Honorary Lecture on the future for rehabilitation in MS.
“I think that this year’s RIMS conference is unique,” says Professor Thompson. “I’ve always been very impressed by the MS Trust’s Annual Conference for health professionals: it’s incredibly engaging and educational, but in a quite dynamic way. With RIMS, the interaction of the MS nurses and therapists with the rehab group could have real impact on understanding of what’s available, how that should be targeted, and the consequent benefits. I’d be very surprised if that didn’t have a real impact on people with MS.”