Deciding to move into a care home is one of the most difficult decisions someone with Huntington’s disease and their family may ever have to make. It can have a big impact on families, both practically and emotionally. There are many factors families have to consider, including the standards of care provided, location, environment and funding for living in the home.

New project

We’re launching a new project which aims to give families confidence when choosing a care home. It will create an accreditation scheme for care homes that look after residents with Huntington’s disease. While there are examples of excellent standards of care around the country, quality of care can vary from place to place. We aim to tackle those differences and recognise care homes giving great service.

Cath Stanley, Chief Executive, said: “Families living with Huntington’s often tell us that one of the biggest decisions they have to make is when their loved one can no longer be cared for at home. The idea of the scheme came from carers who have made this difficult decision and felt such a scheme would have reassured them at a challenging time.”

We want families to be at the heart of the scheme. Your experiences will help to inform adjustments that can be made to improve the understanding of Huntington’s disease, making sure that residents get the best care possible.

How you can get involved

By sharing your experiences, you can help families to have confidence in choosing the right care home with their loved one.

You can get involved by:

  • Completing an online survey on your experiences of choosing a care home and the care you or your loved ones have received. Take the survey now by clicking here.
  • Taking part in a focus group, which will involve discussions about care homes with a group of other people. Please contact Ewan McHenry to find out when and where your nearest focus group is being held.
  • Taking part in a one-to-one interview to share your experiences. Please contact Ewan McHenry for more information.

If you’d like to find out more about any part of the project please contact Ewan McHenry, Project Coordinator by email to or call Ewan on 0151 230 2171 or 07841 037625.

Categories: families

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