Help us in our work campaigning for care coordinators to support those affected by Huntington's disease.
People living with Huntington’s disease often do not have a single point of contact (such as a nurse or social worker) to coordinate their care. This means family members become care coordinators by default and so become responsible for:
- Tracking appointments across a range of providers
- Educating healthcare professionals about the disease
Not only does this add significantly to the emotional and logistical burden of caring for a person with Huntington’s, but it can also lead to an increased risk of unplanned or crisis care due to a lack of comprehensive oversight from professionals.
To combat this, we are campaigning for care coordinators.
What is a care coordinator?
Care coordinators are health or social care professionals who provide expert advice, along with practical and emotional support, to help people with diseases like Huntington’s manage their condition.
They can liaise with the range of providers a person may need support from, in areas including:
- Mental health
- Occupational therapy
- Social care
Crucially, care coordinators act as a bridge between a person’s specialist Huntington’s disease service and community services, and can make a real difference to people’s lives.
We need your help:
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.
We’re asking members of the Huntington’s community to take part in a short survey about care coordination.
This survey takes around 10 minutes to complete, and is open to anyone aged 18 and over affected by Huntington’s disease, including family members and carers.