Gloucestershire Integrated Care Board (ICB) are currently scoping the Huntington’s disease pathway in the county. As such, they have created a project group to bring together those with expertise and knowledge of Huntington’s disease. The group will gather existing data and information to facilitate improvements in how they support people with Huntington's disease in the county.

The group currently consist of commissioners (from health and social care), clinicians and staff from the Huntington’s Disease Association.

Patient and Public Involvement (PPI) plays a vital role in ensuring that healthcare services are developed to meet the needs of users. They work collaboratively with people affected by Huntington’s disease which is critical in ensuring that the working group effectively supports the development and delivery of high-quality and inclusive services.


Who can get involved?

  • If you are affected by Huntington’s disease (symptomatic, at-risk, tested positive or negative) or if you have current or recent experience of caring for someone with Huntington’s disease
  • Live in Gloucestershire
  • Ideally have accessed (or supported someone to access) services, in Gloucestershire, in relation to Huntington’s disease.
  • Be willing to share your experiences with others to help improve services
  • Have access to the internet and be able to use Teams (or willing to learn)
  • Have an email address where information can be sent to


What does the role involve?

  • You will meet every three months, in person or virtually depending on infection control advice and on the purpose of the meeting
  • The virtual meetings are during the day for around one hour
  • If a meeting is face-to-face it will be during the day and at a suitable location
  • The group is expected to last for 12 months


If you are interested in this opportunity to get involved and would like to know more, please contact James MitchellHealth and Social Commissioning Manager at NHS Gloucestershire or Ruth Sands, Head of Advisory Service at Huntington's Disease Association. The deadline is 27 January.



Is it a paid role?

No, this is a voluntary role. Out-of-pocket expenses will be paid, and where meetings are
held face to face light refreshments will be provided.


What knowledge do I need?

  • Your expertise will be in your experience, and your opinions as a family member
  • You need to be able to read papers in advance of meetings and be willing to comment
    within a mixed group of professionals (however there may be the option to be part of a PPI
    sub-group which has a nominated representative to feed into the group)
  • Ideally have a wider picture of Huntington’s perhaps by knowing other people with the

How will I access support?

You can contact either James Mitchel - Health and Social Commissioning Manager at NHS Gloucestershire or Ruth Sands from the Huntington’s Disease Association.

If you have any accessibility needs (for example with transport or needing information in large print) please let us know.


Please note by registering your interest to be part of the group your data will be held by the Huntington’s Disease Association in line with the privacy policy and by NHS Gloucestershire. Your data will only be used to support the work of this Project Group and not shared with others.

Your data will be disposed of at the end of the project in line with Information Governance.