Title: PARC: A self-management intervention to support Physical Activity for people with Rare neurological Conditions
Funder: Department of Health and Social Care

Abstract: We know that it can be hard for people with rare conditions such as those affecting the brain, spinal cord, nerves or muscles to be physically active. This can have a large impact on managing day to day life and general health. This project aims to develop new ways for people living with rare conditions to be as physically active as they can and want to be. The project is called Physical Activity in Rare Conditions (PARC) and we will learn from people living with these conditions and together develop new ways to support physical activity in whatever way is possible. There is currently a lack of understanding of the needs of people with rare diseases and how to support them to engage in physical activity. However, we have been able to learn from a recent study called ENGAGE-HD, which developed supported &ldquo;self-management&rdquo; for physical activity with people with a condition called Huntington s disease. People gained confidence about doing more physical activity and overcame the barriers to building activity into everyday life. We plan to build on this work and together with people living with rare conditions we will develop a new intervention and training package for health-care staff to support people with rare conditions to be more physically active. The plans in this project have involved ideas from five charities that support people with rare conditions who supported the idea of developing an intervention and training package similar to ENGAGE-HD. Their input has helped us shape each stage below: STAGE 1: The programme development work will help explore the needs of people with rare conditions in more detail and inform our larger programme grant (2nd stage) when we will try out the new PARC intervention and work out the best ways to measure any changes, identify challenges and how easy it is to recruit people from different hospitals. The programme development grant will involve three specific areas of work: 1) Building on and growing our close collaborations between research and our patient public involvement team (PPI) from the charities and patient/carer representatives; 2) Building relationships with potential collaborating NHS sites across England and finding out about existing services, support and resources currently available for people with rare conditions; 3) Work in collaboration with the PPI group to agree the types of measures that should be used in the larger programme grant, to ensure the study assesses what is important to them. This development work will be carried out through workshops with the charities, patients and families, interviews, surveys and literature reviews.

Lay abstract: We know that it can be hard for people with rare conditions such as those affecting the brain, spinal cord, nerves or muscles to be physically active. This can have a large impact on managing day to day life and general health. This project aims to develop new ways for people living with rare conditions to be as physically active as they can and want to be. The project is called Physical Activity in Rare Conditions (PARC) and we will learn from people living with these conditions and together develop new ways to support physical activity in whatever way is possible. There is currently a lack of understanding of the needs of people with rare diseases and how to support them to engage in physical activity. However, we have been able to learn from a recent study called ENGAGE-HD, which developed supported &ldquo;self-management&rdquo; for physical activity with people with a condition called Huntington s disease. People gained confidence about doing more physical activity and overcame the barriers to building activity into everyday life. We plan to build on this work and together with people living with rare conditions we will develop a new intervention and training package for health-care staff to support people with rare conditions to be more physically active. The plans in this project have involved ideas from five charities that support people with rare conditions who supported the idea of developing an intervention and training package similar to ENGAGE-HD. Their input has helped us shape each stage below: STAGE 1: The programme development work will help explore the needs of people with rare conditions in more detail and inform our larger programme grant (2nd stage) when we will try out the new PARC intervention and work out the best ways to measure any changes, identify challenges and how easy it is to recruit people from different hospitals. The programme development grant will involve three specific areas of work: 1) Building on and growing our close collaborations between research and our patient public involvement team (PPI) from the charities and patient/carer representatives; 2) Building relationships with potential collaborating NHS sites across England and finding out about existing services, support and resources currently available for people with rare conditions; 3) Work in collaboration with the PPI group to agree the types of measures that should be used in the larger programme grant, to ensure the study assesses what is important to them. This development work will be carried out through workshops with the charities, patients and families, interviews, surveys and literature reviews.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS
Health categories: NEUROLOGICAL