Improved quality care and support.
In one of our blogs, Camilla talks about how the advisory service has helped her:
“I learnt about the Huntington's Disease Association after a few years of looking after her (sister). The Specialist Adviser for Cornwall was amazing. He ran sessions in the nursing homes to provide information on Huntington's disease and how best to help patients and he provided help with continuing healthcare (CHC). My great auntie wasn’t even given a Huntington's consultant or specialist Huntington's nurse due to non-compliance. Our adviser helped me to learn about the disease and give me advice at various stages when needed."
The expertise of the advisers and the understanding of Huntington’s disease that they have demonstrated the difference that knowledge can make in improving care and support.
This quote from a service user shows the difference our services make:
“Our family has had the support of the Huntington's Disease Association at a time of severe emotional stress. It was the only place that could possibly understand the complexities of a family member being diagnosed with Huntington’s disease and the impact of that on all concerned. Though one or two family members are accessing the service, it has a trickle effect which enables you to support others in the best way possible.”
Our services continue to be in demand, with our advisers working to support families across England and Wales. We offer support in a number of ways and will attend clinics to ensure all health and social care professionals are supported in providing the right care for someone with Huntington’s disease.
Huntington's Disease Association Quality Assured
The Quality Assured accreditation is a mark of assurance to make choosing a care home more of a positive experience for families affected by Huntington's disease. The scheme improves choice and provides people with reassurance that core standards of care will be provided and more information to help them make a decision about the best care home for their needs.
Accreditation is a rigorous process and Huntington's Disease Association Quality Assured was this year awarded to:
- Exemplar homes - Dearnevale in Barnsley and Kavanagh Place in Liverpool
- Fieldbay homes - Yr Ysgol and Pen Y Bont
- Elysium Health Care - Stanley House in Herefordshire
Juvenile Huntington’s disease and young people
This year saw a return to in-person events. We were delighted to be able to hold the Juvenile Huntington's disease weekend in June 2022. The first in three years.
A weekend attendee said:
“We made new friends who are in the same situation as ourselves, people who can understand and empathise with us.”
Youth Engagement Service - HDYES
Due to its hereditary nature, Huntington’s disease affects all generations. Working with children and young people is key to offering people with Huntington’s disease the generational support they need. This year we have been working and consulting with young people to see how services can be designed to meet their needs. We worked with an external agency to consult with young people to prevent bias. The lockdown in the previous year had a huge impact on young children and how they accessed our services. Understanding we needed a fresh approach to engage with young people we worked with an external company to consult with young service users. From this, the Huntington’s Disease Youth Voice was created - a group of young people who will help us develop the services, programmes and resources that we create so that we can provide the best possible support for young people impacted by Huntington's disease. The group started in January 2023 with a residential meeting of ten young people accompanied by our Youth Coordinators. This group continue to meet and influence the way our HDYES service has transformed.
Offering direct financial support through welfare grants improves people’s quality of life, and independence and reduces risks. £10,022.75 was awarded in 40 grants during 22/23. All of these grants were for people symptomatic with Huntington’s disease. Research found that the grant improved quality of life in 93% of cases, and in 81% of cases, risk had been reduced.
Understanding the importance of the website as a source of information for the community, we aim to continually improve the website. Working with the community allowed us to improve the navigation of the website and understand what information they looked for when visiting www.hda.org.uk.
Through consultation a new website was designed with an easier-to-manage content system, this meant website updates could be made more timely and the design reflected what the community told us they wanted. For example, the ‘How we support you’ area of the website now includes all information by area including all details of the local adviser, branches and support group information.