Project information

Empower, Inform, Support for Huntington’s Disease

People with Huntington’s disease (HD) face physical and emotional decline as well as ignorance and isolation. Our specialist HD advisers give emotional and practical support and reduce isolation, raise awareness, aid empowerment, and inform and educate the health and social care sectors and public.

Ongoing

Charity information: Huntington's Disease Association

Huntington's Disease Association logo
  • Need

    Need

    A diagnosis of Huntington’s disease is frightening and devastating. A sufferer faces years of decline mentally, emotionally, and physically before requiring 100% care. Many professionals have little experience of this incurable illness. Each child of a sufferer has a 50% chance of inheriting it. Families need emotional and practical support to ensure they get the best possible care from health and social services and relief from the isolation and hopelessness HD causes.

    Solution

    Our specialist advisers reduce isolation through home visits to families, telephone advice, family days and other events. Their unique and extensive knowledge of HD enables health and social care professionals deliver the best possible care. They empower carers who are struggling with the day-to-day care of loved ones with this complex illness. And they raise awareness through training days. Most of all, they give hope for a better life to those who felt they had none.

  • Aims

    Aim 1

    Reduce isolation of families with Huntington’s disease

    Activities

    » Make regular home visits to help families cope with a diagnosis of HD
    » Organise regular family days to enable families to meet one another and just have fun
    » Liaise with branch and support groups to get new families involved
    » Organise summer camps for children who have a family member with HD so they can have a bit of respite and enjoy themselves

    2,084 individuals will be less isolated through home visits, branch support groups, professional family information days, and our family conference


    Aim 2

    Raise awareness of Huntington’s disease

    Activities

    » Hold information days for families reaching more than 2,000 carers/family members
    » Work with health care professionals at HD clinics to ensure best practice is followed
    » Hold professional training days for those in the health and social care sectors

    By working with health and social care professionals, quality of care will be improved. We will measure this through questionnaires and family surveys


    Aim 3

    Provide emotional support for families with Huntington’s disease

    Activities

    » Be a listening ear and shoulder to cry on through home visits and telephone support

    We will do 156 home visits annually to people with HD and their carers, supported activities such as family conference and 3 summer camps for children and 2-day young peoples forum


    Aim 4

    Aid empowerment of families

    Activities

    » Assess for provision of specialised chairs and beds and changes to home
    » Signpost to appropriate agencies for benefits
    » Attend carers’ support groups to better ascertain family needs
    » Hold events where families can get to know one another

    472 carers/family members will be educated to improve their skills to look after their loved ones, 1,612 will have access to other professionals


    Aim 5

    Inform and Educate

    Activities

    » Hold education days for families and professionals
    » Give out leaflets on various aspects of HD to families
    » Give talks at schools and community meetings about HD

    At least 60 health and social care professionals will be supported and trained, higher attendance at training events, increased numbers at branches/support groups


  • Impact

    Impact

    The project will improve the quality of care for people with Huntington’s disease and their families and extend the period of time they can live in their own homes. It will reduce stress for carers and improve service provision by the NHS. It will ensure families receive correct social benefits to maximise their income and equipment to ease the physical strain of the disease.

    Risk

    Staff turnover -- our staff turnover rate is very low and we minimise this risk through regular progress reports and staff training. Health and Safety – our advisers receive regular training in Health and Safety. They must check in before and after each home visit and keep detailed diary sheets so we know where they are at all times. Funding – we have 5 fundraisers who ensure the continued funding of these essential posts.

    Reporting

    Donors will receive our bi-annual newsletter and regular emails. We also will post news on our website and social media sites

  • Budget

    Budget - Project Cost: £153,400

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      Amount Heading Description
      £102,300 Salaries, NI, Pensions For four adviser positions in England and Wales
      £9,400 Travel For advisers to make home visits and visit clinics and care homes
      £7,680 Training, telephone, expenses For staff training, telephone advice, petrol and other expenses for four advisers
      £18,350 Management charge For the management of the four advisers
      £15,670 Administration For all admin help for four advisers

    Current Funding / Pledges

    Source Amount
    Cambridge CCG £1,500 Guaranteed
  • Background

    Location

    We already help 1,612 individuals with HD or at risk of having it and 472 carers in these geographic areas. There is the potential to help a further 414 people with HD or at risk of it and 27 carers.

    Beneficiaries

    1,612 individuals with HD or at risk and 472 carers

  • Why Us?

    Why Us?

    We are the only organisation in England and Wales that offers this service.

    Read more about the Charity running this project.

    People

    Shirley Bignall

    Specialist HD adviser

    Sue Hill

    Specialist HD adviser

    Sue Tompkins

    Specialist HD adviser

    Kay Holmes

    Specialist HD adviser

£100

will pay for 1 specialist HD adviser for 1 day