Parents of children with muscular dystrophy and adults with the condition shared powerful testimonies at the first session of the new All Party Parliamentary Group (APPG) for Muscular Dystrophy inquiry into access to psychological support yesterday.
What happened at the meeting
The session, chaired by Mary Glindon MP, heard from:
- Sue Barnley, whose son Harry has Duchenne muscular dystrophy
- Louisa Hill, whose son Archie has Duchenne muscular dystrophy
- Steve Ledbrook, who has Becker muscular dystrophy
- Jaspal Mann, whose son Kirath has Duchenne muscular dystrophy
- Sarah Mitchell-Innes, who has congenital myotonic dystrophy
- Mathy Selvakumaran, who has congenital myopathy
We are very grateful to everyone on the panel and those in the audience for providing such open and emotive views and experiences throughout the session.
The APPG was keen to establish strong patient perspective themes to take forward during the inquiry. These included:
- needing access to psychological support where there is an understanding of muscular dystrophy and the progressive nature of the condition
- lack of psychological support available alongside support from other neuromuscular health professionals
- recognition that psychological support is required for both people with the condition and also family members
- psychological support should be available close to home as the clinic setting is not always appropriate
- referral processes take many months
- people are forced to turn to private psychological support because of long waiting times or inadequate support
The next session on Wednesday 21st March will focus on evidence from health professionals and professional bodies.
How you can get involved
The APPG would like to hear from people with muscle-wasting conditions and family members about their experiences of accessing psychological support.
There are some questions in the Have Your Say document, and you may wish to answer some or all of these, or alternatively you can email a statement of no more than 250 words about psychological support. Please email your answers to the questions or your statement to Jonathan Kingsley at firstname.lastname@example.org by Friday 27th April 2018.
For more information about the inquiry, please contact Jonathan Kingsley at email@example.com or on 020 7803 4839.