Psychological support when you live with a muscle-wasting condition
We know how important it is to get support not only at the point of diagnosis but as your condition progresses too. Many individuals and families shared their experiences with us during a recent investigation by MPs and Peers, supported by MDUK, into improving access to psychological support. Join us in Parliament on Wednesday 21 November for the report launch, and to find out more.
Thank you for this, Di.
I'm not able to attend but would value updates from those who do.
Best wishes,
Gilly
I attended this meeting in which the chair of the APPG for MD, Mary Glindon MP (Lab, North Tyneside), presented the group's report on Access to psychological support for people with neuromuscular conditions. Link to report: https://www.musculardystrophyuk.org/wp-content/uploads/2018/11/MDUK-APPG-report-141118_final-lo-res.pdf
The agenda took the form of four 5-minute statements from various practitioners and also a parent of a Y6 boy with DMD, all of whom stressed the fundamental importance of psychological support for the person with the condition, their family and also practitioners themselves who were supporting the family. The point was made several times that up to now nearly all support had been targeted on physical need, but now there was a welcome and necessary recognition of emotional need.
The rest of the 2-hour session was given over to networking with service users, parliamentarians, NHS practitioners and representatives of various charities in the field.
The report is illuminating and in my view represents an excellent piece of work, particularly as it includes a whole section devoted to lived experience evidence.
Please see also https://www.musculardystrophyuk.org/news/news/new-report-on-gaps-in-mental-health-services-launched-in-parliament/
Max
That's interesting Max. In light of this, I wonder how specialist teachers in PD support this SEMH area of need (with any PD diagnosis)?
Do most people signpost onto counsellors/psychologists/CAHMs? Does anyone do any low level work e.g. 'Draw n Talk' or meet 1-1 to capture where they are at? Or are any other teams fortunate to have a Play Therapist etc trained in their department?
I personally feel that mental health is such a sensitive area, that it almost becomes the elephant in the room that is addressed too late and can affect Education entirely. The gap/waiting list for referrals is part of the problem. Kate
