Getting help with the symptoms and associated difficulties of HD
Examples of 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 )
Key Services and People
Lothian HD Service ( HD Clinical Lead , HD Specialists , Specialist Youth Advisor , Financial Wellbeing Officer )
Lanfine Service ( Specialist Team for Adults with Progressive Neurological Conditions )
Clinical Psychology / Neuropsychology
Rehabilitation services
Community Mental Health Team ( Edinburgh City , Midlothian , East Lothian , West Lothian )
Mental Health Assessment Service ( Crisis Service )
Acute General Hospital ( Royal Hospital for Sick Children , Royal Infirmary of Edinburgh , St John’s Hospital , Western General Hospital , Royal Edinburgh Hospital )
Social work assessment & care management ( Edinburgh City , Midlothian , East Lothian , West Lothian )
Speech & Language Therapy
Dietetics
Physiotherapy
Occupational Therapy ( Edinburgh City , Midlothian, East Lothian , West Lothian )
District Nurses ( via GP )
GPs
Pharmacy
Palliative Care Services
Podiatry
Wheelchair & seating services
Faith based organisations ( see Spiritual Care Services or Local Interfaith Forum )
Electronic Assistive Technology Service
Driving Assessment Service
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 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
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