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

Social isolation

Dealing with prejudice & stigma

Coping strategies

Spiritual needs

Specialist clothing (e.g. Limon Attire)

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

Key Services and People

HD Specialists

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

Health & Community Care Services

Appropriate recreational & leisure opportunities (see Capability Scotland & Focus on Disability )

HD Support Groups

Advocacy services

Assistive Technology

Specialist clothing (e.g. Limon Attire)

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

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

Carer Support Services (e.g. Carers Trust , Carer’s Scotland , Shared Care Scotland , Care Information Scotland)

Emergency Services

Driving Assessment Centre

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.

Standards

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.

Outcomes

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