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How can occupational therapists help people with MS?

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Gilly and Steph

Occupational therapists (OTs) can help people overcome everyday difficulties and stay independent for longer. However MS specialist OTs are still rare in the UK. We spoke to Gilly Burdon, an MS specialist OT working for Wye Valley NHS Trust in Hereford, about her work, the difference she makes, and how she’s supported by the MS Trust

Read about how Gilly helped new mum Steph with fatigue

Read about how Gilly helped Katie manage MS cognitivie issues

Gilly, can you tell us briefly what occupational therapy actually is?

Occupational therapy is about trying to enable people to remain as independent as possible. It’s a patient-centred approach where we work with people to identify the issues they’re having and what areas of their life they’d like to be able to engage in more. We look at ways to address their problems and hopefully enable them to become more independent or remain doing what they enjoy for as long as possible. This could be anything from enabling someone to be able to prepare a meal themselves, to joining their family to take their dog for a walk, to being able to use their computer more easily.

How did you become an MS specialist OT?

After I qualified as an OT, I moved to London where I had a role at the National Hospital for Neurology and Neurosurgery which is where I first worked with people with MS. When I left London I knew that I wanted to be working in a neurological setting, but ideally with people with MS. However, this didn’t seem likely, because I was moving to a rural area where there’s less scope for specialists. But when I moved back to Herefordshire I met up with Del Thomas, the clinical specialist MS nurse here. She was negotiating a new MS OT role and luckily I got the job.

How did Del demonstrate the need for a specialist OT?

Del is responsible for over 550 people with MS. The Care Quality Commission identified her service as needing support, so there was scope to change how the service was configured. A lot of the people she saw were struggling with fatigue. She was also having to provide increasing support in order to help to remain in work. She felt an MS specialist OT would be ideally placed to address these issues.

How do you help people manage fatigue?

Over 80 per cent of people with MS experience fatigue. It’s very common but it can be hard for people who don’t have MS to understand its impact. My role is to offer support to the person. I help them to understand what fatigue is and identify what type of fatigue they have. Together we identify strategies, which can help them to reduce their fatigue and manage their energy levels more effectively throughout the day.

What kind of strategies do you suggest?

It’s a good idea to try to incorporate rests into the day. There’s been lots of research carried out into the benefits of rest. The evidence suggests that having 20 minute rests, staggered throughout the day, can help people get through their day without having that afternoon crisis period when they feel they can’t carry on.

Other strategies include looking at someone’s lifestyle and the activities they’re doing in the day. Can we reduce some of the jobs they have to do? Can we delegate some of them? And then can we prioritise what’s really important to them?

It’s not about taking away roles or routines, it’s about looking at how we can get people to be as productive as possible through being really efficient at managing energy. A lot of it is about forward planning. For example, rather than being really busy on a Monday and Tuesday and then spending the rest of the week recovering, looking at ways to spread activities out, so people don’t experience the peaks and troughs.

How do you help people with issues around work?

My role is to ensure that people are aware of their rights, what help is available to them, including what services are out there and how to access them. I help people to draw up possible reasonable adjustments which they can make at work. Often I visit people in their work environment to list the different roles they carry out and what difficulties these pose. I’d then write a report of my findings and send it to the employer with a list of reasonable adjustments. Following that we’d meet with the employer so both parties can negotiate the proposed adjustments.

People can be supported to remain in work in many ways, for example, by introducing flexible working hours or reducing the amount of work somebody is given to do. I would also assess how somebody is able to access their work environment, For example, if somebody has got bladder difficulties, can we make sure it’s easy for them to get to the loo?

Do you think your work with the MS nurse is a good model?

Del and I share the same office so communication is fantastic. Although we’re busy, we’ve still got time to discuss patients, and we can update each other about any issues that are happening, which can only be a positive thing in terms of providing an efficient and ongoing service for people with MS.

Del has identified that more people with relapsing MS are starting on disease modifying drugs. This is great because it means people are being proactive about treating their MS. But monitoring the drugs takes up an increasing amount of nurse

time. From my perspective, I think OTs are perfectly placed to help, by working with people with MS on the issues that are affecting their everyday lives.

It’s quite dynamic for Hereford to have an MS-specific OT, I think. There are not many of us in the UK, so it’s an incredible opportunity for me. My in-depth knowledge of MS helps me to really understand people’s symptoms and the problems that

impact on their everyday lives.

How does the MS Trust support you?

The MS Trust are so supportive. I attend their fantastic annual conference which is partly subsidised by the Trust. I also went on the week long foundation course they offer to new MS specialists, from which I learned a lot and was able to consolidate my knowledge of MS.

The outcome from the course was a piece of research. The aim of which was to develop an area of my OT service. One of the areas in which I was lacking was my handwriting assessment. Although I could assess people, I didn’t have access to any adaptive equipment to trial with them. So although I could highlight the fact they were having difficulty, I wasn’t able to explore what might make things easier.

By doing my research I was able to produce a business case and secure the funding required to purchase the equipment. So I am now able to offer an holistic approach to handwriting, because I can enable people to trial different pieces of equipment to see what works and what doesn’t. It’s amazing how a small thing like helping people to write can make a big difference to their confidence. For someone to be able to write a birthday card to a loved one and be satisfied with the style and quality of their handwriting is hugely important.

I displayed my research as a poster at the MS Trust conference last year, and was amazed to win first prize. It was fantastic to win and for my work to be acknowledged. I didn’t even know there would be a prize! It was £500 to put towards training. I can now put that towards a course later this year.

New ways of delivering MS specialist services

At the MS Trust we believe that Gilly’s partnership work with Del, the MS specialist nurse, is a really interesting model for supporting people living with MS. It’s one of the examples we’ve been looking at in our MS Forward View project, exploring how we can best ensure that MS services work for everybody – whether they have relapsing remitting or progressive MS.

We’re going to be publishing the findings of MS Forward View this autumn. To find out more visit mstrust.org.uk/forwardview

Gilly is taking part in the London to Paris cycle ride in July 2016. Find out why she's cycling for the MS Trust.


This story is part of the May 2016 issue of Open Door. Read the whole issue. Sign up to receive the latest news every quarter.