Duchenne UK attended the All Party Parliamentary Group for Muscular Dystrophy Inquiry at the House of Lords last Wednesday last week to discuss: “Access to psychological support for people affected by muscle-wasting conditions” 

The APPG would like to hear from people with muscle-wasting conditions and relatives with positive and negative experiences of accessing psychological support and the importance of being able to access this support, as well as health professionals, NHS commissioners and professional bodies, throughout the inquiry.

This is a really important area as many families who are diagnosed with Duchenne are unable to access any help.

Please email your answers to the questions or your statement to Jonathan Kingsley at [email protected] by Friday 27th April 2018.

For more information, please read below:

All Party Parliamentary Group for Muscular Dystrophy Inquiry:

“Access to psychological support for people affected by muscle-wasting conditions”

GET INVOLVED IN THE INQUIRY – HAVE YOUR SAY

Background to the inquiry

A new parliamentary inquiry investigating access to psychological support for people affected by muscle-wasting conditions is being conducted by the All Party Parliamentary Group (APPG) for Muscular Dystrophy, chaired by Mary Glindon MP, and with secretarial and organisational support provided by Muscular Dystrophy UK.

The six month inquiry is assessing the availability of psychological support, which is a vital element of support for individuals and families to manage and cope with muscle-wasting conditions.

The inquiry takes place as Muscular Dystrophy UK prioritises mental health and wellbeing through the Mental Health Matters initiative. In December 2017 the Government published a Green Paper on ‘Transforming children and young people’s mental health provision’.

The inquiry will also consider the psychological support required by the impact of a potential future newborn screening programme and the increasing pipeline of emerging treatments.

Terms of reference

The terms of reference for the inquiry are:

"To determine the availability of psychological support at specialist and community level for children and adults with muscular dystrophy and related neuromuscular conditions."

Evidence testimonies

The APPG would like to hear from people with muscle-wasting conditions and relatives with positive and negative experiences of accessing psychological support and the importance of being able to access this support, as well as health professionals, NHS commissioners and professional bodies, throughout the inquiry.

There will be a separate document released in due course for health professionals on sharing written evidence for the inquiry.

Suggested questions to consider for written testimonies

  • What type of counselling or psychological support do you receive or you have received in the past in relation to your muscular dystrophy or neuromuscular condition? (e.g. have you seen a psychologist with expertise in muscular dystrophy and neuromuscular conditions, or generic counselling support) 
  • Have you accessed counselling or psychological support on an ongoing basis or at a particular point (e.g. at diagnosis, or at specific points in coping with progression of the condition, impact on family members and relationships)?
  • Can you describe the impact of a muscle-wasting condition on family members, such as parents or siblings, and carers?
  • Have you found the counselling or psychological support helpful for you in coping with the condition, and has the support been tailored towards long-term and progressive conditions?
  • Do you feel your counsellor or psychologist is sufficiently knowledgeable about your condition?

  • Can you outline the referral process for accessing counselling and psychological support? (e.g. through a neuromuscular health professional or a GP)
  • If counselling or psychological support has not been available, what alternative sources of support have you accessed (e.g. other neuromuscular health professionals)?
  • Are there any further comments you wish to make about accessing counselling or psychological support in relation to your condition?

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 [email protected] by Friday 27th April 2018.

We would greatly appreciate it if you could include contact details with your written testimony in case we need to clarify any information.

Part or all of the testimony provided may be included in the final report.

If you would like your testimony to be anonymous, please state this clearly when sending your testimony.


Scope of the inquiry

The APPG will hold three oral evidence sessions and invite written evidence submissions to be made.

To ensure that this is a UK-wide investigation, the cross-party groups in the Scottish Parliament, National Assembly for Wales and Northern Ireland Assembly are running parallel sessions on access to psychology support, and the final report will take account of issues discussed at these sessions.


All Party Parliamentary Group for Muscular Dystrophy

The All Party Parliamentary Group (APPG) for Muscular Dystrophy is a group of MPs and Peers in the Houses of Parliament which raises awareness of all types of muscle-wasting conditions and promotes links between parliament, individuals and families affected by these conditions, charities and scientists, health professionals and decision-makers.