Welcome to the spring edition of the TiMS newsletter.
In February, I attended my first working group meeting as incoming co-chair, and without surprise, the group has started 2020 as they mean to go on - full throttle!
In this edition, we have an overview of the NHS RightCare progressive neurological conditions toolkit, as well as information on this year's MS Trust annual conference; we are also pleased to update you on the various projects that TiMS have been and continue to work on.
As always, if there is anything you feel TiMS should be looking at, please let us know.
Michelle Davies, Co-chair of TiMS
People with progressive neurological conditions are experiencing delays in diagnosis and treatment, fragmented or uncoordinated services, limited availability of neuro-specialist rehabilitation and reablement and a lack of psycho–social support.
A RightCare toolkit for progressive neurological conditions has been developed with NHS England and charities including; the MS Trust, the MS Society, Parkinson's UK, MND Association, Sue Ryder, and The Neurological Alliance.
The toolkit sets out shared priorities amongst the conditions, provides a set of practical actions to take towards improvement and best practice examples of what 'good' looks like. Visit NHS Progressive Neurological Conditions to access the toolkit (p46 onwards is the MS section).
The conference is returning to Jurys Inn Hinckley Island Hotel from the 1-3 November 2020. There will be a mix of plenary sessions, seminars and interactive workshops, with plenty in the programme for AHPs.
Online booking will open in early April and there will be 50 bursary places covering 80% of the cost available to TiMS members. These will be allocated on a first come-first served basis so look out for further information from the MS Trust.
This is a chance for us all to raise awareness of multiple sclerosis and the work of the MS Trust. MS is often misunderstood, with many people not realising what it's actually like to live with it. By speaking up about MS, in MS Awareness Week and all year round, we can change that. This year the focus is mental health and MS.
Visit MS Awareness Week to find out more and order your MS awareness week pack.
The working group membership has been reviewed and all members will be asked to re-state their commitment at the end of each three year term. Members must have current active involvement with an MS caseload, or bring relevant experience. If you are interested in joining the working group please email firstname.lastname@example.org.
The TiMS sub- groups have also been reviewed and the aims and objectives of each sub-group have been updated and will be incorporated into the TiMS Aims and Constitution.
Self-reported annual review tool
The tool has been evaluated by HCPs and pwMS. A professional, copyright version is now being produced. Look out for an update of where we are at in the next newsletter.
Annual review guidelines
A guidance document on how to use within your service is being produced and will be made available through the TiMS and MS Trust website.
Over 30 centres have expressed an interest in taking part in the next stage of this project. This stage may be too big for TiMS to conduct independently so we are looking into potential partnerships to take this forward. It is hoped that future studies will provide robust evidence for the need and access to specialist respiratory services for pwMS which is lacking in so many areas.
In the meantime information regarding best practice for monitoring and managing respiratory issues in MS including a "how to" guide and respiratory pathway will be added to the website. So watch this space!