Huntington’s Community Connect: Gap analysis report published

The research for the report took place in the second half of 2020 and included a rapid evidence review of the current prevalence of HD, that is, how many people are diagnosed with HD in Australia, as well as the number of people receiving funded support.

The report confirms the relevance of the Huntington’s Victoria Social Impact Domains and explored the relationships of these domains. Participants responded to all the domains as being relevant. Domains were described as either being about risks and safety or about social inclusion. Risks and safety topics included housing stability, and economic sustainability. Social inclusion included health and symptom management, physical wellbeing, emotional wellbeing, and building resilient relationships.

As part of the research, Huntington’s Victoria ran focus groups with members of the HD community and health professionals supporting people with HD. We asked what services and supports people use, and what services and supports they need. We asked about gaps and we asked how peer connection might help. We also ran a peer support session to shape our final project recommendations.

Our community told us about the suitability and effectiveness of the services they access, what they need from peer-to-peer support, and what they want health and disability professionals to know about the disease.

A space for our community to support our community

Huntington’s Community Connect will be a peer-led online forum and a safe space where all members of the community can come together. People will be able to share information and get support via the forum. Community members will also be able to find information on their rights and develop the skills and confidence to better navigate service systems and achieve their own goals.

The report made a number of recommendations to Huntington’s Victoria in implementing Huntington’s Community Connect, including that:

• the service is constructed with clear roles and support structures
• the community aware of the relationship between peer support and other forms of support
• the service provides clear links to other resources by subject and region.
• the service should be monitored closely to make sure processes are being followed. This monitoring should continue ongoing.
• The service should be opt-in and flexible according to individual needs.

What comes next?

Huntington’s Victoria will now start work on implementing Huntington’s Community Connect with the guidance of the Steering Committee.

The focus groups included members of the steering committee in addition to other stakeholders, as identified in the gap analysis report.