Welcome to the third TiMS newsletter which reports back on the Working Group meeting held in September.
Remember that TiMS is here to help you manage people with MS so please contact us if you need help in your practice or if you have any ideas or innovative ways of working so that we can pass them on.
Pam Bostock and Wendy Hendrie (Co-chairs of TiMS)
MS affects respiration
Did you know that pwMS often have respiratory problems very early after diagnosis? It is briefly mentioned in the NICE guidelines but is often overlooked in MS. TiMS are aiming to produce a resource about respiration to raise awareness about what to look for and how to manage problems. If anyone is already using a respiratory assessment please let us know. Contact: email@example.com
Progressive Neuro Competencies near to completion
TiMS are working with PDUK and MNDA to publish easy-to-use knowledge and skills competencies for therapists (Band 5-8) working with people with MS, PD and MND. Many therapists from around the UK are working on these competencies which should be available early in the New Year.
The story so far:
- 20 competencies have been developed
- PT and MS and PT and PD framework completed
- the framework with be an on-line tool in Excel
- it can be viewed as a complete document or sections can be downloaded for individual use
- you will be able to record evidence of achieving each competency which can be linked to CPD (eg. case study, attending course, discussion with clinical lead)
- the intention is that the competencies will be endorsed by all the professional bodies and special interest groups
We will let you know as soon as they are available.
Annual Review form
The new NICE Guidelines for MS (Oct 2014) recommended that everyone with MS had an annual review carried out by someone with expertise in MS. The Working Group have been considering ways of doing this including an electronic form for HCPs and a client-held form. Designs will be trialled in areas around the UK next year before a definitive form is available. If you are using any forms which you feel captures review information we would be very grateful if you could send them to us: firstname.lastname@example.org
How motivated are your patients? The Patient Activation Measure (PAM)
The PAM describes the knowledge, skills and confidence that a person has in managing their own health and social care. Approximately 200 sites have been given a licence to use the PAM tool which enables HCPs to tailor services to the individual needs of their patients to improve health outcomes, ensure a better experience of care and reduce unplanned hospital admissions. TiMS would like to be part of this trial and will approach the Kings Fund to see if we can use the tool or be part of the second phase.
New TiMS Working Group members
Four new people joined the Working Group at the meeting in September: Chris Beach PT, Tania Burge PT, Fiona Roberts OT and Amy Smissen OT. All bring with them a wealth of experience in all aspects of MS management, research and service provision. The Working Group consists of 25 therapists from across the UK. If you would like to join the Working Group details of how to join are in the TiMS constitution. We are still looking for a SLT representative to join the group!
Working group September meeting - minutes
Please contact us if you would like a copy of the minutes from this meeting
If you have a question concerning any aspect of managing people with MS, please contact the working group and we will do our very best to help you.
Each quarter we publish one question which has been sent to the TiMS:
Question: I have a patient who gets very tired when they get hot, to the point where they can hardly function. Do you have any tips on how to keep cool?
Answer: We know that nerve conduction can slow considerably with even small increases in temperature. In fact many years ago the 'hot bath test' was put forward as a way of testing whether someone had MS! Keeping cool can prolong someone's ability to keep going. Ask the person to avoid hot drinks and hot meals if they are out and about, especially if they are doing any sort of activity. An iced drink or cold pudding may help them to feel stronger for longer. Other ideas include:
- wearing a cold, damp T-shirt (maybe under a dry top) to do activities - sounds horrible but it works!
- keeping a few cold, damp cotton scarves in a cool box or fridge and using them one at a time to tuck in around the neck if they begin to feel hot
- keeping a water spray handy to spray on the face to keep cool and running cold water over the inside of the wrist
- trying not to turn the heating up too high or putting on too many warm clothes (although many people with MS have problems with their internal thermostat and feel the cold so this is often difficult to do!)
Hope that helps!