Huntington’s disease (HD) is a rare, inherited, neurodegenerative disease, with onset usually in mid-adult life. It progressively affects a person’s everyday functions, and there is no way to stop or slow it. People who contract HD have a median life expectancy of 15 years.
The NHS does not currently have a service model that outlines the delivery of care for HD patients, despite the requirement for numerous clinical professionals to support patients, family members and carers.
This project is a collaborative partnership with Surrey Heartlands Health & Care Partnership (SHHCP), Kent Surrey Sussex Academic Health Science Network (KSS AHSN), Roche Products Ltd. and the Huntington’s Disease Association (HDA)
A co-production/co-design approach was taken, to create a service model that is fit for purpose.
Stakeholder engagement identified challenges around communication and co-ordination, support, knowledge and awareness, together with suggested solutions.
A patient and carer survey dug deeper into the areas requiring further support, and a co-design workshop looked at the achievability and impact of the suggestions, resulting in themes which were tested in a second workshop.
This intelligence was used to generate a care pathway, from pre-symptomatic patients to those requiring end of life care.