1. To expand Huntington’s disease (HD) specialist services to areas where there is currently no HD services available to families struggling to cope with the condition.
2. To sustain adequate levels of support for our families during this time of increased need across our services.
3. To raise awareness of the impact Huntington's disease has on families living in communities across Scotland.
For some time now, and especially over the last 18-24 months, many of our Huntington’s disease (HD) service teams have experienced a rapid increase in the number of referrals and an escalation in the complexity of the situations they are required to deal with to support our families. This has had a profound impact on the charity trying to manage the services and sustain adequate levels of support for our families.
There also remains areas of Scotland with no, or limited, HD services, which means families often only receive reactive telephone support rather than the proactive home visits they require.
The lack of awareness and understanding around Huntington’s disease makes life even more difficult for families. Families are constantly faced with explaining the condition to their own networks, and even health and social care professionals. Often people are left feeling frustrated they aren’t getting the support they need due to this. Families are often isolated and stigmatised in their communities when members of the public don’t understand why and how Huntington’s disease changes their movement, mental health, personality and behaviour.
Our solution comes in two parts.
Part one – Ramp up our efforts as a community to raise awareness of Huntington’s disease (during the global HD Awareness month) and the struggles faced by families amongst the general population, politicians, and key decision makers in health and social care.
With a recent upswing in attention for the HD community, the time has come for the spotlight to firmly shine on HD families and for the stigma and isolation to end.
Read how SHA is raising awareness during HD Awareness Month at hdscotland.org/news
Part two – Secure funding to expand our HD services in areas with no, or limited HD Services
The Scottish Government backed National Care Framework for HD states that NHS Boards should have HD Specialists in place. However, five NHS board areas (Borders, Forth Valley, Orkney, Shetland and Western Isles) do not. In addition, areas who do have a full service face gaps due to staff absence and spikes in complex cases. These situations result in clear inequalities of service throughout Scotland.
Funding will help us provide a Peripatetic HD Specialist to families, that would not be tied to any particular NHS Board area, who would instead focus their work on whatever area was most in need at any given period, including those areas currently with no service at all.
This role is designed to help cover these gaps in the short term, and plan a more equitable service provision for the long term.
The role will support families in areas with:
- Higher and/or more complex than normal caseloads
- Staff absence
- No specialist service
The role would ensure virtual and essential face to face visits as required. The proactive support is designed to keep clients cared for at home, reducing costly emergency admissions.
Our initial findings are that the need is even greater than we had anticipated with our Peripatetic HD Specialist expected to receive 150 client referrals to the service. A recent visit is evidenced below:
"After no face to face visit for two years due to the coronavirus pandemic .I walked into this one man’s room in the care home and I could not believe the immediate issues I was confronted with.
This man was extremely thin with significant movement and was at significant risk of injury from the bed and inadequate padding. I found later this man had no family or friends and had no visitors nor could he communicate effectively. The home had no hoisting scales so have not obtained a weight. The lead nurse also made a comment that he found it particularly difficult to see this man as they were the same age. I've arranged training for the staff in the care home, arranged to get adequate bumpers installed on her bed immediately and the manager has now obtained hoisting scales to regularly weigh this man. I spent some time with him and even managed to raise a wee smile."
- Jillian Foster, National HD Specialist
Who are Scottish Huntington’s Association?
Scottish Huntington's Association (SHA) is the only charity in Scotland dedicated to supporting families impacted by Huntington’s disease (HD), an incurable genetic condition with devastating physical, cognitive and mental health symptoms. Those impacted by HD will eventually lose the ability to walk, talk, eat, drink, make decisions or care for themselves - requiring support for most or all of their activities on a 24 hour basis.
The dreadful toll on families is compounded by the reality that each child of an HD positive parent is at 50% risk of inheriting the faulty gene that leads to the disease. In Scotland around 1,100 people have HD, with a further 4,000 - 6,000 estimated to be living at genetic risk of inheriting the life-limiting disease. Symptoms typically begin to develop between the ages of 30 and 50. Although, in around 5 - 10% of cases HD symptoms develop before the age of 20. This is known as Juvenile Huntington’s disease (JHD).
Scottish Huntington’s Association was founded in 1989 by families for families with Huntington’s disease. It has grown to provide a Scotland-wide network of services, informed by the insights of our family members who continue to play a key role in driving forward the charity’s growth, impact and influence at local, national and international levels.
We can make sure nobody in Scotland has to cope alone with the impact of Huntington’s disease. Thank you for helping to make this possible.