We are pleased to share our new guide for healthcare professionals on NHS CHC assessments for people with Huntington's disease.
Too many people living with Huntington’s disease are not getting the NHS funding they are entitled to. To help address this, the Huntington’s Disease Association has developed a new guide to help health and social care professionals conduct fair and accurate NHS Continuing Healthcare (CHC) assessments, ensuring people with Huntington’s disease receive the care and support they need.
Why does NHS Continuing Healthcare matter for Huntington's disease?
Huntington’s disease is a rare, inherited neurological condition that affects movement, thinking, and behaviour. As the condition progresses, many people need complex, long-term care, often around the clock. NHS Continuing Healthcare (CHC) funding can cover the full cost of this care. For families affected by Huntington’s disease, this support can be life-changing, reducing financial pressure and helping ensure consistent, appropriate care.
What is NHS Continuing Healthcare (CHC)?
NHS Continuing Healthcare (CHC) is a package of care for adults in England and Wales whose primary need is a health need. If eligible, the NHS pays for all care costs, whether care is provided at home, in a care home, or elsewhere. Eligibility is decided through a formal assessment process. However, for people with Huntington’s disease, this process does not always reflect the full complexity of the condition.
Challenges with CHC assessments for Huntington’s disease
Assessing Huntington’s disease can be difficult, especially for professionals without specialist knowledge. Symptoms such as cognitive decline, behavioural changes, and loss of insight are often less visible but have a significant impact on daily life and care needs. This means care needs may be underestimated, and CHC funding may be denied
CHC guide for health and social care professionals
This new guide supports professionals to carry out accurate NHS Continuing Healthcare assessments for people with Huntington’s disease.
It includes practical guidance to:
- understand the full impact of Huntington’s disease
- recognise less visible symptoms
- improve consistency in CHC decision-making
The guide focuses on ensuring that both physical and cognitive needs are fully considered.
Developed with Huntington’s disease experts
The guide has been developed with professionals who have direct experience of Huntington’s disease and NHS Continuing Healthcare.
Alex Fisher, Senior Occupational Therapist in Neuropsychiatry at Birmingham & Solihull Mental Health Foundation Trust and Huntington’s Disease Module Lead at the University of Birmingham, said:
“Assessing the care needs of someone in the later stages of Huntington’s disease can be challenging, particularly without experience of the condition. This guide supports more accurate CHC assessments.”
Lilian Wiles, Registered Nurse and All Age Continuing Care Case Manager – Appeals at NHS Birmingham & Solihull Integrated Care Board, said:
“ I appreciate how challenging and complex the CHC Assessment process can be for people with Huntington’s and their families. This guide will help to ensure the full spectrum of the individual’s needs is consistently identified and considered in a robust and accurate way”
We encourage all health and social care professionals to download the guide and share it with colleagues.