TiMS really enjoyed the MS Trust conference 2023. The launch at the beginning by the MS Trust was amazing, setting the tone for a conference highlighting the journey MS care has been on for the past 30 years.
“Really enjoyed the How to implement the MS consensus Bladder& bowel management guidelines and Pathway in your MS service was a useful session.”
“Emma Talintire’s session, presenting on Recognising and Managing Relapse was an interesting session about how to recognise relapse from a nurse, therapy, and doctor perspective, it was really useful to take away.”
“The talk on Palliative Care in MS, specifically, ethics in palliative care also really good, and the examples were typical of the patients they we’re seeing. I liked having non-MS specialist speakers who brought practical knowledge.” As a group we felt that it incorporated the best of MS practice as well as useful tips from non-MS specialist speakers who brought practical knowledge. Tim Farmer on mental capacity and Oliver Asha on Wills were particular highlights.
We also really enjoyed the yoga and mindfulness session, “Where we were having a break from the conference and learning practical skills that can be implemented into our practices easily.”
“Additionally, the session on MS Fatigue: Insights and current perspectives, was great and provided useful tools such as FACETS.”
“Another key highlight was the talk by Dr Lou Jarrett in the opening plenary, which really got us thinking about the language we use around MS.”
We were really pleased to see the number of therapy orientated posters presented at conference and would like to congratulate Laura Douglas on her honourable mention for her poster.
We are looking forward to next year’s conference and seeing more new therapy posters being presented.
This year at conference we held a meet and greet session for new members at the beginning of the conference. Over 20 new AHP’s to conference attended.
The session was an informal session with a gentle icebreaking activity so people could get to know each other, and some tips of how to get the most out of conference. From taking notes in the speed dating session on how to prioritise which posters to see. It was so lovely to see people buddy up in the session and observe them navigate their first conference together.
The TiMS committee feels promotion of physical activity and exercise is a large part of our role as therapists working with people with MS. There is a growing base of compelling evidence for the benefits of exercise for people with all stages of MS, but putting this into clinical practice can feel daunting.
A working party has come together to make a consensus document of evidence based and expert-opinion options for using exercise as part of a management plan for MS, for all levels of ability, which we hope will be a concise and clinically relevant tool for many of you to use in practice.
The Specialist Neurological Intervention Audit Tool (SNIAT) is a tool that was developed in Dorset in 2012 for use by Specialist MS/Neurological health care professionals in evidencing the ways in which these professionals prevent long term complications, which can lead to poorer outcomes and unscheduled care (including emergency hospital admissions) through the interventions that they undertake with people with MS or other long term neurological conditions. The SNIAT has been used in a number of MS services and as part of the MS Trust’s Generating Evidence in MS Services (GEMSS) and Advanced MS Champions (AMSC) programmes.
It is hoped that a new focus on the SNIAT involving a collaboration between TiMS, the MS Trust and UKMSSNA can move the SNIAT forward, to enable it to be used by more services and health care professionals.
A staggering 90% of people living with MS experience fatigue. Worryingly, fatigue has one of the biggest impacts on quality of life and is the most cited reason for people with MS giving up work. Despite this overwhelming statistic, it is estimated that only a third of people who experience fatigue are offered a treatment. The evidence shows that non-drug approaches to fatigue management, such as exercise, balance, and cognitive behavioural therapy, have promising results for reducing fatigue for people living with MS. And yet, these treatments are not reaching enough people. In a recent survey of over four thousand people with MS, only 13% of the people experiencing fatigue were offered a non-drug treatment.
The REFUEL-MS research programme aims to fill this gap in fatigue treatment by developing a new digital app to help reduce fatigue for people living with MS. The app will focus on the person with MS largely self-managing their fatigue using physical activity or balance, and aspects of cognitive behavioural therapy. REFUEL-MS officially kickstarted in October 2022, and aims to develop and implement this new app into routine NHS care within 5.5 years.
While the treatment is intended to rely on self-management, there will be some minimal guidance needed from healthcare professionals to help guide people through the treatment. Given the variability between MS healthcare services in the UK, and not to mention the enormous pressure on healthcare professionals working in the NHS, these decisions must be made carefully. Most importantly, healthcare professionals must be involved in making decisions about their involvement in the app, so that their thoughts can impact how the app is developed.
If you would like your voice to impact how the REFUEL-MS app is developed, the research team are currently looking for healthcare professionals to take part in an online focus group discussion. During this focus group, a member of the research team will ask you to talk about your experiences of fatigue management in MS with a small group of other healthcare professionals. You will also be shown a short description of the proposed fatigue app to gather your thoughts on how you think the REFUEL-MS app should work. The focus group would last up to 2 hours, but there is also the option to take part in a shorter, one-to-one interview instead. At the same time, the REFUEL-MS team are also running focus groups and interviews with people living with MS, their paid carers and loved ones to feed into app development.
If you are a healthcare professional or service manager working with people with MS and would be interested in signing up for a focus group, you can read more about this research study via the REFUEL-MS survey
Throughout the REFUEL-MS journey, there will be ample opportunity for healthcare professionals to get involved. As well as taking part in a focus group, there will opportunities to help co-produce and user test the healthcare professional platform of the app. If you want to be involved in any of these activities, the research team would love to hear from you! The team is based at King’s College London and led by Professor Rona Moss-Morris who has been researching fatigue in MS for over 20 years. You can reach the team via email at REFUEL-MS@kcl.ac.uk or telephone on 020 7188 2606.
There will be lots more to come over the next 5 years, so keep up to date with the progress of REFUEL-MS via their website (refuel-ms.com), Instagram (@refuelms) and Twitter (@REFUEL_MS)!
We look forward to hearing from you!
We are currently recruiting for more OTs, Dietitians and Speech and Language Therapists to join our working group! We meet 4 times a year, with one of those meetings being face to face. If you would be interested in joining the working group, please contact therapistsinms@mstrust.org.uk with your CV.
We’ll be sad to see Michelle stepping down from the Co-Chair role later this year and we will be voting in a new member of the Working Party to sit alongside Jody in this role.
We will continue to deliver a quarterly newsletter and you can see resources and updates on our Twitter feed @TherapistsInMS. You can also email questions for the Working Party via therapistsinms@mstrust.org.uk