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, postural support)

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 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. In order to ensure that all information is shared contact with clients by all health staff should be reported on Care Partner.

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 via HD Lead Clinician who has 1 monthly session set aside for this purpose.

There are clearly established relationships, referral routes and criteria for referring a person with HD to Mental Health Services and coordinating care via the HD Management Clinic.

The named HD Specialist is notified of all hospital admissions, and a local system is in place to ensure this happens automatically in the form of a daily email to HD Clinical Lead and HD Specialists.

Specialist clinician provides a care plan update at each HD Management Clinical Appointment and uses secure email 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. HD Management Clinic is located in XXXX and has a strong working relationship with its staff to make referrals.

Referrals are made via SCI Gateway. GP communication taking place via secure email.

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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