Welcome to the TiMS end of year newsletter.
As we ready ourselves for Christmas celebrations, we reflect on 2019 being another very busy and rewarding year for the TiMS Working Group.
In this edition, we say goodbye to Wendy Hendrie, who is stepping down as co-chair of the working group; provide an update on the TiMS Self-Reported MS Assessment Tool and respiratory pathway, and look forward to being involved in more exciting projects in 2020.
Wendy Hendrie stepped down from her role as co-chair of TiMS in November after 6 years at the helm. We would like to extend a huge thank you to Wendy for her passion, commitment, and hard work as co-chair as well as many years before this as part of the working group. We all agree, TiMS would not have achieved half as much as it has without her.
Michelle Davies is delighted to have been appointed the new co-chair working alongside Pam Bostock. Michelle currently works as MS Service Lead and Practitioner for the Dorset MS Service, based at Poole Hospital.
TiMS presented the initial phase of this project at RIMS earlier this year.
The NICE MS Guidelines (2014) recommends that all people with MS should have an annual review by professionals with expertise in MS. The MS Self-Reported Annual Review Assessment Tool (AR) was developed to assist in the implementation of this guidance. An initial phase one pilot was undertaken to explore the professional perspective, demonstrating that the tool was feasible to implement, and valued as an adjunct to practice. The aim of the second phase was to explore the views of people with MS regarding acceptability of the assessment tool, and whether they considered it added value to the review process.
Seven sites from across the UK took part in phase two and it was concluded that, the annual review tool was acceptable to people with MS, representing a variety of MS types and disability levels. It was feasible to implement within different clinical settings and was considered by the service users to be useful in informing their annual review process. TiMS now plan to review the tool in line with the feedback received, with the aim of making it available for people with MS and the professionals providing services for people with MS.
Watch this space!
A small scoping study was completed by TiMS in September to gain a basic view of the lifestyles, disease process, medications and co-morbidities alongside peak cough flow (PCF) values for people with MS of different Expanded Disability Status Scale (EDSS) bands in 3 centres. The aim was to look at potential trends and risk factors contributing to a low PCV and therefore identify people with MS who may be at increased risk; in order to inform a potential larger study.
The study showed that in ambulatory people with MS, (lower EDSS bands) lower PCF values were recorded in people who were obese, smoked, or had pain in the back or chest/abdomen. In people with higher levels of disability, (higher EDSS bands), lower PCF values were recorded in people with impaired activity, upper limb function, and swallow; with increased co-morbidities; and with medications which might have a depressing effect on the respiratory system, (e.g. gabapentin and opioids). TiMS will now be looking at the feasibility of conducting a larger study in this area.
In addition to the above, TiMS will be working on a number of other areas including:
As a stakeholder, TiMS is also providing information and input into the review of the NICE MS guidelines. Since the 2014 guideline was published the AHP community has stepped up to the challenge in conducting more recognised research in the form of randomised controlled trials. It is hoped that this research will be considered as part of the guideline review.
If there is anything you feel TiMS should be looking at, or you would like to be more involved in TiMS we would love to hear from you.
From the TiMS working group and the MS Trust, we wish you a very Happy Christmas and a peaceful and healthy New Year.
