We asked our community what issues they would like us to prioritise in future campaigning.
…A care co-ordinator who would work on the person's behalf would be a godsend.
Thank you to everybody who took the time to complete our campaign survey. We’ve had a fantastic response, with 171 people taking part. The findings will help our work to influence decision makers, including the government, to improve care and support for people affected by Huntington’s disease.
The three issues you told us to prioritise are:
Coordinated care
Ensuring everyone affected by Huntington’s disease can access a care coordinator who understands their needs and can help them access services and support. Almost nine in ten people (89%) said this should be a top three priority for us.
Guidance for health professionals
Ensuring there is guidance for health professionals on what good care and support looks like for people living with Huntington’s disease. Over eight in ten people (82%) said this should be a top three priority.
The benefits system
Ensuring that the benefits system meets the needs of people living with Huntington’s disease. Three in four people (75%) said this should be a top three priority.
Our other findings include:
- Over half of people (53%) said they or the person they supported had experienced significant problems relating to Huntington's disease that they hadn’t been able to get help with.
- Almost half of people (44%) told us that improving access to mental health services should be a priority. This was a focus of ‘Unseen and Unheard’ - our report on Huntington’s disease and the mental health system.
- More than one in two people (51%) said they or the person they supported did not have a specialist NHS health professional or team to manage care (e.g. a specialist nurse or Neuro Rehabilitation Team).
Someone who completed the survey said:
Having well-trained and informed clinicians will improve understanding and quality of care.
Next steps
We will be working throughout this year and beyond on the issues that you’ve told us to focus on and will be updating you on our progress.
Cath Stanley, Chief Executive, Huntington’s Disease Association said:
Thank you hugely to everybody who completed this survey. We did this survey to make sure our work is focused on the issues that matter most to people affected by Huntington’s disease. I’m looking forward to working alongside you to campaign for better care and support.
How you can get involved
Join us and help campaign for better support for people affected by Huntington’s disease. When you sign up, you'll be the first to hear about campaigns the Huntington’s Disease Association is planning and ways you can get involved. Please tick the campaign box below when you fill out the form.