MS Research could not help people without the incredible efforts of fundraisers and the generosity of our donors
The key purpose of research is to generate reliable answers to important questions so that we can continue to improve treatments and eventually see the back of MS. In 2018 we supported several research programmes under our theme of “difficult to treat symptoms”. Initial studies on MS related tremor were completed and papers on the development of a new measurement system to quantify movement disorders in the hand and arms in MS were submitted for publication.
We are now ready to use this unique system to evaluate treatments for tremor and to better understand why some people respond well to treatment and others do not. Tremor is relatively uncommon in MS but can be very disabling especially when severe.
2018 was also the final year of the PhD programme on understanding fatigue in MS carried out at CRIC (Clinical Research and Imaging Centre) Bristol. Research papers are currently being submitted for publication on all these projects as well as on the evaluation of better treatment strategies for neuromuscular fatigue and mobility and balance. We also supported some additional work on a stem cell study that aims to gain a better understanding of the functional capability of stem cells from people with MS compared with non-MS donors.
Helping people manage their MS
Most people with MS experience fatigue. FACETs (Fatigue: Applying Cognitive behavioural and Energy effectiveness Techniques to lifeStyle) is a course that helps people who have MS to manage their fatigue and to make more effective use of their energy. Studies by researchers at Bournemouth University were originally funded by the MS Society and tested at three independent sites, one of which was the Bristol MS Research Unit, resulting in The FACETS course. MS Research continues to fund free delivery of FACETS at its headquarters in The Vassall Centre, Bristol.
In 2018 MS Research concluded its seventeenth course treating over 100 people. The Bristol course was run by MS specialist research physiotherapist, Angela Davies Smith, and assistant therapy practitioner, Olivia Powell. At the request of the UK MS Society, Angela also administers FACETS training to professionals across the UK.
In November of that year, she was invited to Melbourne, Australia, to train health care professionals and staff members at Australia’s MS Limited equipping them with the information needed to deliver FACETS across Australia.
MS Research and the Bristol MS Research Team have also played an active part in the Anglo-French Group IMSPIRE, helping to oversee the translation of FACETS into French and to discuss issues of FACETS clinical delivery in France and other European countries.
“I felt completely positive about it all. The professionalism of the work that went into developing it, the presentation, the content, the materials. An absolute gift to any busy yet motivated health and social care professional.” - Feedback from the trainer facilitator course at MS Limited.
In 2018 MS Research launched the MS Hand and Arm Clinical Advice Service (MSH&A) run by a specialised neuro-occupational therapist with excellent knowledge of the symptoms of MS and who have impaired dexterity or hand and arm tremor an opportunity to discuss upper limb symptoms during a one-to-one appointment. It also provides advice and the chance to sample various aids designed to alleviate upper limb movement disorders that may help with everyday tasks. At present only one session a month is available for this MS Research funded service, so appointments are precious.
2018 also saw the development of a short advice course for people who have MS related bladder and bowel difficulties. This course was designed by a retired NHS MS professional with specialist knowledge of MS continence problems and treatment.
All courses may be delivered at suitable locations. Currently they are available in the wider Bristol region. Our offices are located at The Vassall Centre, which is one of the earliest barrier-free workplaces in the UK and with ample disabled parking.
Core Stability in Wheelchair Users
A project to help positioning in wheelchair users with trunk instability explored ways of preventing the many unwanted consequences of being a regular wheelchair user. A group of five Bristol University design engineering post graduate degree students explored the use of new measurement systems for assessing the needs of wheelchair users. Alongside this, they evaluated new materials with staff from University of the West of England (UWE), using 3D printing techniques to aid design and test support systems that move from wheelchair to normal seating with the wheelchair user. This study was also supported by staff at the Bristol Enablement Centre who provide disability services in the South West for people with MS who are wheelchair users. All students were awarded their Masters degrees in 2018.