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Mental Health Matters to MDUK

24 May 2022

Living with a muscle-wasting condition can take a toll on both your mental and physical health. This can be from stress and fatigue from everyday life but also from trauma surrounding condition progression milestones, whether its when they arise or living in anticipation.

While some people living with muscle-wasting conditions tell us of the social isolation they feel, others tell us of their struggle with anxieties surrounding their condition. These feelings span not only the person diagnosed with a muscle-wasting condition, but can also affect their family members, their carers, and other members of their personal support system.

While the world is becoming increasingly aware of the importance of mental health, people living with muscle-wasting conditions still face significant barriers in accessing the support they need. Some struggle with difficulties surrounding referrals to talking therapies and access to medication to help mental health management. Furthermore, some people with muscle-wasting conditions can’t access the coping mechanisms suggested to manage good mental health, such as exercise or spending time in nature which is often inaccessible when using mobility aids.

People really need support to help them navigate their journey after a diagnosis and each milestone thereafter. That’s why we are relaunching our Mental Health Matters campaign.

We know improving access to mental health support for people affected by muscle-wasting conditions must happen now. MDUK is therefore pressing to see:

  • better recognition of the psychological impact of muscle-wasting conditions on both individuals and members of their personal support system
  • psychological support from the point of diagnosis to both manage the struggles surrounding day-to-day life and tackle significant milestones
  • better integration of mental healthcare professionals into specialist neuromuscular multi-disciplinary teams
  • improved referral pathways for individuals to access psychological care
  • psychological upskilling for healthcare professionals working with people with a muscle-wasting condition

What is MDUK doing to affect change to mental health support?

Over the past few years, the NHS has focused on sustaining core services while also trying to manage the additional patients requiring urgent care due to COVID-19. Through our Shining a Light work, MDUK has heard the impact the lack of access to services and shielding has had particularly on people with muscle-wasting conditions.

Since the focus has shifted to recovering from the pandemic, we have been contributing to consultation responses across the UK and devolved nations’ governments. We know access to mental health support services needs to be improved by having clearer referral systems, incorporating people with chronic conditions when making mental health policy and improving the mental health workforce. Further, we have been organising psychological upskilling events for neuromuscular care advisors, providing them with more tools to support people with muscle-wasting conditions in the short term.

Now we are looking to recover services even further. As part of this campaign, we will be taking our concerns to parliamentarians and key NHS decision-makers across the UK to put forward key changes that will improve the mental health of people living with muscle-wasting conditions. Through our Mental Health Matters steering group, we will also review ways to improve access to services and ways MDUK can better support our community.

If you are keen to get involved, please get in touch with We will also continue to share updates on the progress we are making in our Mental Health Matters campaign.

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