Help us improve care!
This survey is for people affected by Huntington's disease, aged 18 and above. This includes people who support someone who is living with Huntington's disease. The survey should take around 10 minutes to complete.
We want to hear about your experiences of care coordination. By sharing your experiences, you will help us influence decision makers, including the government, to improve care and support for people affected by Huntington’s disease.
If you have any questions about the survey, please email us at: info@hda.org.uk
We really appreciate your time and feedback.
What are care coordinators?
Care coordinators are health or social care professionals who provide expert advice on care, along with practical and emotional support, helping people with conditions like Huntington’s disease to manage their condition throughout their lives. They can have different job titles, including ‘Clinical Nurse Specialist in Huntington’s Disease’ or ‘Neuro Navigator’. Their role is different to that of a Huntington's Disease Association Adviser.
Care coordinators can liaise with the range of providers a person may need support from, in areas including occupational therapy and social care. Crucially, they act as a bridge between a person’s specialist Huntington’s disease service and community services. This involves ensuring health and social care professionals have the knowledge they need about Huntington’s disease and are able to provide high-quality and joined-up care.