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)
Key Services and People
Social Work (assessment & care management)
Integrated Multi Agency Arrangements, Referral Pathways and Resources
There is a core specialist team that includes a HD Clinical Lead, HD Specialist, Allied Health Professional staff, psychologist, psychiatrist and neuropsychologist that coordinates the symptom management of each person with HD. Client facing staff should ideally remain consistent, providing continuity of support over time.
There are sufficient HD management clinics to allow at least one multi-disciplinary annual review for each person with HD and their carers.
There is a responsive and needs based facility for domiciliary visits, as required.
There are clearly established relationships, referral routes and criteria for referring a person with HD to mental health services and coordinating care.
The named HD Specialist is notified of all hospital admissions, and a local system is in place to ensure this happens automatically.
Specialist clinician should use client management system to update GP on care plan.
With consent of the client a GP should complete a Key Information Summary (KIS) entry. General staff must contact specialist team.
Clear referral arrangements to rehabilitation services are in place.
Information to be shared via SCI Gateway
The Physician’s Guide to HD provides clear guidance on symptom management, including movement/motor (p39), cognitive (p51) & mental health/psychiatric symptoms (p63).
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 must 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.