New guidance aims to help health professionals improve Huntington’s care across mental health, cognition and wider support.
The resources have been developed by the Huntington’s Disease Association (HDA) with experts including Dr Sarah Gunn, from the University of Leicester, and Dr Akshay Nair.
Huntington’s disease is a rare inherited condition that gradually damages nerve cells in the brain. It can affect movement, mood, thinking, behaviour and independence.
The new publications focus on mental health and cognition, which means thinking, memory and how people process information.
The mental health framework covers core principles of care, common mental health conditions, assessing need and capacity, drug and psychological treatments, admission to mental health units, holistic care and personalised care planning.
Dr Gunn, a practising NHS clinical psychologist at the University of Leicester and specialist in neuropsychology, helped develop the mental health guidelines with Dr Nair, a consultant neuropsychiatrist.
Dr Gunn, who is also co-lead for Leicestershire Huntington’s Disease Network, said: “Huntington’s is a rare and complex condition, and healthcare professionals may feel unsure about how best to support people living with it.
“These new sets of guidelines bring together available evidence to support informed and confident clinical practice, and cover the different types of difficulties and needs commonly seen in adults affected by Huntington’s disease.
“The mental health guidelines provide information on psychological interventions and pharmacological treatment, and have been reviewed by a community member with lived experience of Huntington’s.
“They’re endorsed by the European Huntington’s Disease Network (EHDN) and the Association of Clinical Psychologists (ACP-UK) and our hope is that healthcare professionals working in mental health services will use them to support adults living with Huntington’s when they need it most.
“Crucially, the guidelines advocate for tailored support to meet people’s needs, rather than a prescriptive approach to help manage a range of symptoms.
“The guidelines are intended to support and complement existing guidance, providing Huntington’s specific information to inform best practice from a compassionate and person-centred perspective.”
David Stephenson, head of policy and public affairs at the Huntington’s Disease Association, said professionals often had limited experience of the condition and its impact.
He said: “These guidelines, developed by leading specialists in neuropsychiatry and clinical psychology, and endorsed by the ACP-UK and the European Huntington’s Disease Network, gives practitioners the knowledge they need to offer effective support.
“We are proud to champion resources like this as part of our commitment to build a better life for anyone affected by Huntington’s disease.”
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