Getting support with day-to-day living and reducing isolation
Examples of 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
Lothian HD Service ( HD Clinical Lead , HD Specialists , Specialist Youth Advisor , Financial Wellbeing Officer )
Lanfine Service ( Specialist Team for Adults with Progressive Neurological Conditions )
Health & Social Care Services ( NHS Lothian, Edinburgh City HSCP , Midlothian HSCP , East Lothian HSCP , West Lothian HSCP )
Appropriate recreational & leisure opportunities ( see Capability Scotland & Focus on Disability )
HD Support Groups
Advocacy
Assistive Technology
Specialist clothing ( e.g. Limon Attire )
Children’s Services, including third sector ( e.g. Childline, Barnardo’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, including respite ( Lanfine Service , Vocal ( Edinburgh City & Midlothian ) , Carers of East Lothian , Carers of West Lothian , Carers Trust , Carers Scotland , Shared Care Scotland , Care Information Scotland )
Driving Assessment Service
Occupational Therapy ( also see Edinburgh City , Midlothian, East Lothian , West Lothian )
Faith based organisations ( see Spiritual Care Services or Local Interfaith Forum )
Speech & Language Therapy
Wheelchair & seating services
Hospice/ Palliative Care Services
Edinburgh Community Rehabilitation and Support Service ( 0131 443 3837 )
Link Workers ( accessed via GP practices )
Integrated Multi Agency Arrangements, Referral Pathways and Resources
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 ( Edinburgh , Lothians & Scottish Borders ) 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