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 are core specialist services  that include an HD Clinical Lead, HD Specialist, allied health professional staff, psychologist, psychiatrist, rehabilitation 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.

Work is underway to ensure sufficient HD management clinics to allow at least one multi-disciplinary annual review for each person with HD and their carers.

Home based visits are available dependent upon the need of the individual.

There are referral routes and criteria for referring a person with HD to Mental Health Services ( Angus, Dundee City , Dundee East , Dundee West , Perth & Kinross ) and coordinating care.

Work is underway to ensure that HD Specialists are notified of all acute hospital admissions via TRAK to enable support of ward staff and families.  Family members are also encouraged to advise HD Specialists of acute hospital admissions.

HD Clinical Lead should write to GP  to update on symptom management.

Where appropriate, and with consent of the client, a GP should share relevant information via a Key Information Summary (KIS) entry to provide guidance to health care professionals in unscheduled care situations.

Clear referral arrangements to Rehabilitation Services are in place.

The Physician’s Guide to HD provides clear guidance on symptom management, including movement/motor (p39), cognitive (p51) & mental health/psychiatric symptoms (p63).

Standards

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

Outcomes

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

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