Welcome to the Autumn newsletter of 2017
After a busy few months working on various projects we are now looking forward to the MS Trust Annual Conference on 12-14 November. We hope many of you have already booked your place but if you haven't there are still a few places left.
We are here to help you manage people with MS so please contact us (link sends e-mail) if you want to join the Working Group, tell us about new ways of working, or if you need advice or support on managing MS.
Pam Bostock and Wendy Hendrie (Co-chairs of TiMS)
Assessment and treatment of the respiratory aspects of neurological disease - a specialist study day held in Birmingham on 3 October
This specialist study day was a great success with a multi-disciplinary attendance of physios, OTs, SLTs, a dietitian and a rehab assistant! The inspirational and interactive day left us buzzing with theory and practical ideas on how to manage the respiratory aspects of our care for people with MS, including admission prevention, airway clearance, swallow and voice optimisation.
Website and online video tutorials
We have recently updated the TiMS website, which we hope will be easier to navigate, to help you find the information you require. Let us know what you think.
We would like to include more educational video tutorials on the site and we’re excited to announce that editing of our recent filming is near completion! Keep a look out for the new videos on spasticity management coming soon…”
TiMS are keen to set up a new audit tool so that you can analyse your service, measure change and compare against other services nationally. We are currently exploring using the MS Trust's MS Forward View report as well as the NICE guidelines and other important guidelines as a basis for this. We'll keep you posted.
The AHP competencies for progressive neurological conditions (Parkinson's, MS and MND) are near completion and will shortly be put out to groups for user testing. It is our aim to support this document with a comprehensive skills and knowledge 'tick-list' for each grade of therapist. The task has been enormous as the documents cover three conditions and four professions but we are nearly there!
Advanced MS Champions project
A focused Working Group and a larger Steering Committee of health and social care professionals, and other experts including people with MS and carers, has been set up. The pilot for the programme will run for three years, working with champions in six sites across the UK. The first AMS champion will hopefully be in post by the middle of 2018.
University of Nottingham survey
The School of Health Sciences at the University of Nottingham is conducting a survey to find out about current management strategies for cognitive problems in people with MS. They would really appreciate your input, the survey should not take no more than 15 minutes to complete and is confidential.
TiMS Working Group meeting
The Working Group met in London in September for their autumn meeting. Please contact us if you would like a copy of the minutes from this meeting.
If you have a question about any aspect of managing MS, contact the working group (link sends e-mail) and we will do our very best to answer it. We publish one question in every newsletter.
Question: Is there was any evidence on energy drinks/caffeine in relation to MS fatigue. I am working with a young chap who reports high levels of fatigue. He doesn’t sleep well and often wakes in the night to urinate. He usually starts his day with an energy drink and then consumes 1 - 2 500ml bottles of diet coke at work. He drinks around 1ltr of water from 5pm.
Answer: There isn’t any research on the use of these drinks in the management of MS fatigue. Probably because they have quite a few adverse effects on health! Point out that his high consumption of these sugary drinks may be making his fatigue worse and may also contribute to other long-term health problems. Therapists are ideally placed to talk to patients about all aspects of their lifestyle including diet. As far as his fatigue is concerned you could try the following:
- Ask him to replace the sugary drinks with water or non-fizzy drinks (but avoiding too much fruit juice).
- Encourage him to drink regularly during the day rather than in the evening. This may give him a better night’s sleep.
- Talk to him about good sleep hygiene – regular bedtime, dark room, noise reduction, no blue light in the evenings and no iPads or phones in the night.
- You may want to look at other areas of his life such as work environment which may be contributing to fatigue.
- We know that fatigue can be helped with moderate, progressive resistance exercise – is he doing any exercise?
- Temperature control is also important and small increases in temperature can increase fatigue. Regular cold drinks and even exercising in a damp T shirt may help if this is a problem.
- Lastly, a fatigue management programme such as FACETS may help him manage his fatigue more effectively. The MS Trust also produce an excellent booklet on fatigue.
I hope that has given you some ideas.