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Scoping Social Care and Support Priorities for Young Adults with Neuromuscular Conditions

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Project Description

Neuromuscular conditions (NMCs) can be understood as a group of conditions that in some cases, are characterised by progressive muscle weakness and loss of muscle mass. In relatively recent years, advances in therapies have meant that a growing population of young people diagnosed with a NMC in childhood, are now accessing adult social care and support. Relatively little is understood about how young adults with NMCs experience adult social care and support and their priorities for improving adult social care and support.

This project aims to work closely with a group of young adults with NMCs to co-produce a research study based on a priority for social care identified by the group. The research study will form the basis of an NIHR Advanced Fellowship application.

Who is involved in the project?

The project team is made up of 5 young adults living with neuromuscular conditions, supported by a researcher. Our bios are below:-

Steven

Steven graduated from Oxford Brookes University with a 1^st Class joint, honours degree in Business Management & Film Studies with an average of 74% across both domains. Following university, Steven joined the Civil Service where he completed a number of key management, executive support, governance and delivery roles in HMRC, Cabinet Office and Department for Health. He now works as Head of Planning and Governance for HMRC based in Westminster. Steven has Spinal Muscular Atrophy Type 3 and uses a wheelchair. He is passionate about diversity and inclusion and raising awareness of diversity issues and has a keen interest in film and cinema, travel and theatre.

Grace

Grace has a neuromuscular disorder called Central Core Disease. Grace recently graduated with a Human Neuroscience degree from the University of Birmingham. Grace was motivated to take part in the project to gain a greater understanding of the research process. Grace also wanted to use her experience of having a neuromuscular disorder to help create a study that will highlight the issues faced by individuals with neuromuscular conditions.

James

James is 29 and has Duchenne Muscular Dystrophy (DMD) which is a neuromuscular condition. In 2021 he set up a Youtube channel called "James Parkin - Living Life DMD Style!!" which is a channel that gives an insight into his life, such as hobbies and activities, equipment, advice, etc, to try and raise awareness. It also highlights that life can still be positive and enjoyable despite the condition. He edits all the videos he does himself. The channel has about 600 subscribers at the moment. James is a big Leeds United football fan who attends games often. He also likes other sports, music, concerts, going out to the country and generally just to keep busy.

Catia

Catia is a young PPI mental health researcher with a neuromuscular disease called Spinal Muscular Atrophy type 2. She is interested in developing effective and sustainable interventions that can support and improve the lives of young people with similar conditions and has been recently offered to do a PhD focused on developing a digital platform for the mental needs of adolescents and young persons with neuromuscular disorders. Her motto is "In omnia paratus!" which translates as "Ready for anything".

Suzanne

Suzanne completed her PhD in 2021 at Ulster University, Northern Ireland. Her PhD focused on resilience in family carers of those with Duchenne Muscular Dystrophy. She is currently the research officer at Pathfinders Neuromuscular Alliance leading a project on transition to adulthood for those with DMD. Suzanne has SMA type II and has been a long-time supporter and volunteer of Muscular Dystrophy UK and SMA UK. She lives in an apartment with her husband and has a care package to support her needs. Suzanne enjoys going out for walks and loves dogs almost as much she loves a good cup of tea!

George

George is a researcher here at the Martin House Research Centre (https://www.york.ac.uk/healthsciences/our-staff/george.peat). Since completing his PhD that aimed to understand social media and video gaming use by young men with Duchenne Muscular Dystrophy, George has been keen to develop research that aims to support young adults with neuromuscular conditions to live meaningful and fulfilling lives. George is passionate about co-production methods, and is excited at the prospect of starting from a blank canvas to developing a study that holds significance and importance to all group members. Outside of research, George enjoys being outdoors; whether that is gardening, walking, cycling, or just ‘Being’.