Huntington’s Disease (HD) is a complex degenerative disease, impacting all aspects of the patient’s life. At present there is no NHS service model that outlines standard delivery of care for HD patients, so this project aimed to co-design one, with patients, family and carers.


The project sought to identify the unmet needs for care for families with Huntington’s Disease. It was successful in bringing together multiple stakeholders from a number of different backgrounds across the breadth of care needs in Huntington’s Disease and highlighted a need for improved partnership working and co-ordination of care.


Dr Nayana Lahiri, Consultant Geneticist, St George’s Hospital

What the project involved

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.


As well as developing the new service model (shown in the image below), a report on the project has been published, outlining how the partnership mapped current service provision, and co-produced the suggested new model.

Pathway diagram for Huntingdon's Disease care

It captured learning from the project, and also proposed the development of, and recruitment to, a new HD care adviser co-ordinator role.

Find out more and read the report here.

Next steps

Funding was agreed with Surrey Integrated Care System to appoint a HD care adviser. A clinical nurse specialist is now in post, and the impact this has on patients and families in the region will be audited.

NHS commissioners in the London and Leicester areas are also interested.

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