Welcome to the TiMS summer newsletter. The sun may be shining (on and off!) but the TiMS Working Group have been shunning the sun-loungers and busying themselves with more projects which, we hope, will improve the management of people with MS and make your working life a bit easier.
In this edition we have news of the respiratory pathway – a much needed piece of work as respiration tends to get overlooked in people with MS even though we know it can be affected early on in the condition. We also have news about other projects as well as the QuDoS awards which showcase best practice and reward AHPs for the amazing work they do for people with MS.
Last but not least, don’t forget to register for the MS Trust conference in November. This three-day conference has so much for AHPs and is a ‘must-attend’ for anyone working with people with MS. We hope to see you there.
Wendy Hendrie and Pam Bostock (Co-chairs of TiMS)
Representatives from TiMS have attended meetings with NHS England looking at how specialist commissioning services should configure regional services. Although they cannot comment specifically on the document until it is published, they have continually championed the need for non–pharmaceutical interventions, especially therapies, throughout this process and have contributed to a pathway development, as well as influencing health and social care requirements for people with advanced MS.
TiMS are setting up a study to collect data about pwMS and their respiratory function. A testing study, over a period of one month, will be undertaken to define what information is valuable to collect. A draft respiratory pathway has been drawn up looking at 3 different groups of pwMS (grouped according to EDSS), to determine how we should assess them, what interventions and onward referrals would be recommended and considerations to take into account e.g. drugs, comorbidities. Currently there are very different levels of service provision and access to specialist respiratory services across different areas.
We will keep you updated on the progress of this study.
Findings from the first phase of this project were presented at the recent RIMS meeting. This was an excellent opportunity to promote the work of TiMS and opened up opportunities to work with MS services across other countries.
Phase 2 of the project to obtain user feedback from patients is underway. There has been a good response from initial sites and members of the TiMS working group and approximately 10 sites are involved in this phase. A poster of the findings from this phase of the study will be presented at the MS Trust conference in November.
The QuDoS in MS recognition programme is back this year. These awards highlight innovation and excellence in MS care management and service delivery, recognising the valuable contribution of individuals and teams in improving the quality of life and experience of care for those with MS.
There is a new streamlined entry process and the deadline for entries has been extended to 5pm on Monday 15 July, so send your nominations in. The recognition evening will be held prior to the MS Trust conference on Saturday 2nd November. More details can be found on the QuDos website.
TiMS is working with the MS Trust to update the posture pages on the TiMS/MS Trust website. As part of this update, some short videos have been filmed which are intended for pwMS, families and carers to highlight postural problems and ways to help deal with the problems.
TiMS are also considering making some videos covering the importance of posture in the early stages of the condition.
Ataxia in MS
Work on writing an Ataxia booklet for pwMS is ongoing. This will be available on the MS Trust website and hopefully as a published resource.
Work is continuing on the annual review template for health professionals and the associate guidelines for what should be considered as part of annual review in MS.
TiMS are reviewing the audit document and updating it in accordance with the NHS 10 year plan to establish if/how this will be taken forward.
Assessment and outcome measures
We aim to have TiMS consensus of recommended measures for improved consistency nationally.
We will update you on these projects in the next newsletter.
If you have a question about any aspect of managing MS, contact the working group at firstname.lastname@example.org and we will do our very best to answer it.
"I wonder if you can offer me some guidance. I am seeing a couple for psychosexual therapy. The woman has MS and struggles to open her legs because of stiffness. We have worked on exploring comfortable sexual positions with her legs closed and the couple have been trying this at home. However, the woman would very much like to be able to open her legs further to make intercourse easier and more varied. Unfortunately she feels too embarrassed to talk to her physio about sex and has asked me to find out what might help her."
Thank you for getting in touch with us about this rarely discussed subject. Here are a few ideas which may help.
It sounds as if this lady has spasticity in some of her leg muscles. This can make the legs 'pull' together as the muscles overwork and, as a result, it can be difficult to relax them in a spread position. Initially it would be worth asking her whether there are any 'triggers' that make that make it worse e.g. constipation, pain or even feeling anxious. Addressing these 'triggers' can often help to relax the legs.
Posture may affect tightness. Sitting well with good support may help. Standing regularly may also help to reduce the tightness (standing frames can be useful for people who find standing difficult). Stretching those tight muscles during the day and night may also ease the tightness. Ask your patient to try placing a cushion between her knees to stretch the legs apart for long periods during the day and night.
Medication can help to reduce tightness and drugs such as baclofen, tizanidine and gabapentin are all designed to 'weaken' tight muscles and make them more relaxed. Taking medication an hour or so before having sex may relax the legs sufficiently, however, this should initially be monitored by a health care professional with an expertise in MS to ensure that there are no unwanted side-effects. Botulinum toxin injections can be very useful for people with this ‘adductor spasticity’. This weakens the muscles but needs to be considered carefully in the context of how the person sits/transfers/walks.
Unfortunately most of these suggestions require some medical intervention. Perhaps if she knows there are different ways she could be helped she may be willing to discuss things with someone such as her MS nurse, GP or neurologist. It may also be useful to try and find a local physiotherapist who has expertise in MS.