Huntington’s Community Connect: Gap analysis report published
The HD community is one step closer to having an online peer support network with the publication of the gap analysis report: Peer support for the Huntington’s community… by the Huntington’s community.
Written by Monash University, the report outlines the current prevalence of the disease, looks at the services and supports available to the community and recommends ways to implement an effective online peer support service.
This the first stage in rolling out Huntington’s Community Connect, funded by the NDIS, which aims to provide online peer support for the HD community and will be implemented by Huntington’s Victoria.
Huntington’s Victoria CEO Tammy Gardner welcomed the report. ‘This gap analysis means we have a more accurate understanding of the national prevalence of HD and the support people are actually receiving, and what they feel is missing. This is crucial for understanding what support Huntington’s Community Connect can and should provide for our community.
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.
The steering committee will guide this process and will be discussing the report in detail in May. The steering committee includes the key stakeholders identified in the gap analysis, this includes state-based HD associations, and the Huntington Disease Network of Australia.
How many Australians have Huntington’s Disease (HD)?
The best available published evidence* suggests a prevalence rate of 8.4 per 100,000 people in Australia. With a current population of 25.7 million people in Australia1, this is around 2,160 people with a diagnosis of HD. Even though the Australian Bureau of Statistics collects national data, information about HD is hidden within the ‘progressive neurological’ category.
How many Australians with HD use the NDIS?
833 people diagnosed with HD were receiving an NDIS package on 31 December 2019.
How many people with HD live in residential aged care?
About 38 people per year over the last five years moved into residential aged care permanently. In total, 331 people with HD were living in these facilities as at June 2019.
How many people are tested and diagnosed with HD in Australia?
Seventeen genetic clinics and services were asked about their testing and diagnosis numbers. They told us it was difficult to count accurately, and also described very different services across the country. Some clinics suggested a national database is required. Three clinics provided information about their service numbers and showed that small numbers of people are tested and diagnosed each year.