There is currently no NHS service model for the care of people with Huntington’s disease (HD), meaning care standards vary nationwide. HD progressively affects a person’s everyday functions and, while medications and interventions can help control its effects, there is no way to prevent its progression and it is ultimately fatal. Numerous clinical professionals are required to support those affected, creating a complex pathway of care.

Co-production of service model

A collaborative project involving Surrey Heartlands, KSS AHSN, Roche Products Ltd. and the Huntington’s Disease Association (HDA), from July 2021 to January 2022, aimed to build on existing services to develop a fit-for-purpose service model providing equitable care. It took a co-production/co-design approach, with stakeholders from project partners, St George’s Hospital, local health and social care professionals, patients, families and carers.

Engagement included surveying patients, families and carers across England to understand where current care services worked well, and two Surrey specific co-design events. Learning from this helped shape a service delivery model for HD patients in Surrey, and led to the successful proposal to develop and recruit to a new HD coordinator post.

KSS AHSN was approached by Surrey Heartlands to provide additional project management expertise and capacity, including overseeing creation of the final report, and the outputs are being shared with NHS commissioners in London and Leicestershire.

Read the report

For further information please contact Peter Carpenter, Service Delivery Director, KSS AHSN.