A new parliamentary inquiry investigating access to psychological support for children and adults affected by muscle-wasting conditions and families has been launched by the All Party Parliamentary Group (APPG) for Muscular Dystrophy, which is chaired by Mary Glindon MP.
Muscular Dystrophy UK will work alongside the APPG during the six month inquiry which follows on from our wellbeing survey in 2015 and comes after the launch of our expert ‘Mental Health Matters’ group last year who are supporting the inquiry.
The inquiry will also look at the support required in relation to any newborn screening programme, for example the provision of specialist support when providing information about undergoing a newborn screening test and the follow-up support after the results of the test.
Evidence from discussions at cross-party group meetings in Scotland, Wales and Northern Ireland will also be incorporated in the final report.
What will happen during the inquiry and how to get involved
The APPG will be holding three meetings in Parliament from February to April at which people with muscle-wasting conditions, health professionals, professional bodies, voluntary organisations and key decision-makers will provide evidence.
As well as the oral evidence sessions at these meetings, 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 j.kingsley@musculardystrophyuk.org by Friday 27th April 2018.
There will also be patient consultation event on our Mental Health Matters campaign on Friday 13th April - more details on this event will be on our website soon.
We will be producing a document for health professionals to respond to shortly.
Aim of the inquiry
The testimonies gathered at the meetings and by email will then be used to produce a final report in June 2018.
The report, which will be presented to the Department of Health and NHS England for action, will incorporate recommendations on:
- improvements which are required to provide excellent NHS psychology support for people with muscle-wasting conditions
- preparations needed in advance of potential newborn screening tests being introduced
- ensuring an increasing in knowledge of muscular dystrophy and neuromuscular conditions amongst community mental health staff
- creating a clear referral process for accessing psychological support
Sue Barnley, whose son 9 year old son Harry has Duchenne muscular dystrophy, and sits on the Mental Health Matters group, said:
I am looking forward to taking part in this crucial inquiry and telling MPs about the level of psychological support which needs to be available for families like mine. Access to psychological support when there is at least an adequate understanding of muscular dystrophy and the impact of the condition can make such a positive difference, and this knowledge is often lacking in generic counselling and mental health services.
Dr Sadie Thomas-Unsworth, a clinical psychologist who chairs Muscular Dystrophy UK’s Mental Health Matters Steering Group, commented:
Alongside Muscular Dystrophy UK’s Mental Health Matters initiative, this inquiry provides a vital opportunity for people affected by muscle-wasting conditions and health professionals in the neuromuscular field to tell MPs about the importance of accessing appropriate psychological support.
To find out more about the inquiry and how you can get involved, contact our campaigns team: campaigns@musculardystrophyuk.org or call 020 7803 4839.