Getting support with day-to-day living and reducing isolation

Examples of Support

Developing personalised support packages, Self Directed Support, Social Work – Children’s Services, Support from family & friends, Local community groups & organisations, Reducing isolation, Disease progression, Loss/ bereavement, Relationships (including sexual relationships & intimacy) , Dealing with prejudice & stigma, Coping strategies, Spiritual needs, Specialist clothing, Financial worries, Impact of behavioural changes on wider family, Dealing with feelings of guilt, Concerns about suicide or feeling suicidal, Pressures of being a caregiver, Worries about the future, Assessment for specialist equipment (e.g. seating, postural control, wheelchairs)

Key Services and People

HD Specialists

Scottish Huntington’s Association Youth Project (SHAYP) / Specialist Youth Advisors

Advocacy Services ( Highland , Argyll & Bute )

Appropriate recreational & leisure opportunities ( Capability Scotland , Focus on Disability , Scottish Men’s Sheds Association , Highland Disability Sport )

Assistive Technology ( Highland , Argyll & Bute )

Befriending Services

Carer Support Services (e.g. NHS Highland , Highland Council , Argyll & Bute Council , Highland Carers AdvocacyCarers Trust , Carers Scotland , Shared Care Scotland , Care Information Scotland)

Children’s Services including third sector (e.g. ChildlineBarnardo’s , Children 1st,  NSPCC , Action for Children, Breathing Space)

Connecting Carers

Counselling Services (  Scottish Counselling Services , Relationships Scotland , Samaritans , Breathing Space )

Driving Assessment Centre

Emergency Services

Equipment and Adaptations (Highland , Argyll & Bute )

Faith based organisations ( see Highland Chaplaincy Services  , Argyll & Bute Chaplaincy Services , Interfaith Scotland  )

Family Services, including third sector (e.g. Turning Point , Breathing Space , Richmond Fellowship, Parentline)

Foodbanks ( Highland , Argyll & Bute )


HD Support Groups

Health & Community Care Services  ( Highland , Argyll & Bute )

Hospice Services

Occupational Therapy ( Highland , Argyll & Bute )

Social Work/ Self Directed Support (Highland , Argyll & Bute )

Specialist clothing (e.g. Limon Attire)

Speech & Language Therapy

Volunteering ( NHS Highland , Highland Council , Volunteer Argyll & Bute , Volunteer HighlandArgyll & Bute Third Sector Interface , Highland Third Sector Interface )

Wheelchair & Specialist Seating Services ( HighlandArgyll & Bute )

Integrated Multi Agency Arrangements, Referral Pathways and Resources

HD Specialists or Specialist Youth Advisor will assess the unmet need of each person with HD and signpost to relevant Health & Social Care Services. HD Specialist also able to assist and signpost to relevant services in event of client becoming involved with criminal justice system.


People with HD who have complex needs must be treated and supported by a multi-agency team (examples include Care Programme Approach and Long Term Care reviews) and have a named Care Manager.

Individuals should have support to be part of their local community in line with Health & Social Care Standards.

Police to keep people with HD on Vulnerable Adults Database, where appropriate.

Fire Brigade to offer risk assessment to all people with HD, where appropriate.

Health & Social Care Partnerships to provide an allocated worker to link with specialist team for all HD clients, where appropriate.


People living with HD and their families feel well informed of and connected to support services, are able to live independent lives where care is personalised to their specific needs.

National Care Framework for Huntington's Disease