Getting help with the symptoms and associated difficulties of HD

Examples of Support

Getting help with motor symptoms ( e.g. chorea, incoordination, problems with speech, fatigue, incontinence, swallowing, communication, falls/ balance, sensory loss, weight loss, oral health, excessive salivation, pain, epilepsy, sleep issues, temperature regulation, changes to posture and movement, sexual dysfunction )

Getting help with mental health symptoms ( e.g. depression, suicidal thoughts, anxiety, psychosis, irritability, obsessive disorder, lack of motivation, agitation )

Getting help with cognitive symptoms ( e.g. problems with: concentration, memory, visuospatial perception, reduced speed of processing, loss of mental flexibility, self-awareness, planning and organising, problem solving, judgement, decision making, repetition )

Integrated Multi Agency Arrangements, Referral Pathways and Resources

There is a core specialist team that includes an HD Clinical Lead and HD Specialist who will work closely with a range of health and social care professionals to coordinate the symptom management of each person with HD. Staff should ideally remain consistent, providing continuity of support over time for client.

There are sufficient HD management clinics to allow at least one multi-disciplinary annual review for each person with HD and their carers.

Home visits can be arranged as necessary, dependent on needs of individuals.

There are clearly established relationships, referral routes and criteria for referring a person with HD to mental health services and coordinating care. Referral routes straight to Community Mental Health Team as per CMHT Operational Framework. Consultant to Consultant referral between HD Service and Mental Health Service.

The named HD Specialist should be notified of all hospital admissions, and a local system should be developed to ensure this happens. This can be done via EMIS, Clinical Portal and also by HD Families informing HD Specialists directly.

Specialist clinician will keep GPs informed on care plan.

With consent of the client a GP should complete a Key Information Summary (KIS) entry.

Referral to rehabilitation services should be considered, liaising with the HD Specialist or HD Clinical Lead.

Staff must ensure that information is shared appropriately with relevant agencies.

The Physician’s Guide to HD provides clear guidance on symptom management, including movement/motor, cognitive & mental health/psychiatric symptoms


European Standards for Huntington’s Disease provides a framework of standards for the clinical management of HD.

The Physician’s Guide to HD provides clear guidance on symptom management. NHS Boards should use this to develop prescribing guidance on HD, which should be ratified by their Drug & Therapeutic Committee to prevent treatments being stopped inappropriately.

Treatment algorithms for chorea, OCD and irritability are also available

All HD clients should have a named HD Specialist

Every symptomatic individual should have a symptom management plan that has been developed with the involvement of an experienced HD Clinical Lead. Where appropriate the client should be provided with a copy of this.

HD specialist team should be notified of all admissions to secondary care.

People with HD should be treated as close to their home as is possible.


People with HD and their families are satisfied with their symptom management, health, wellbeing and quality of life.

National Care Framework for Huntington's Disease