Getting support with day-to-day living and reducing isolation
Examples of Support
Developing personalised support packages
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 )
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 )
Occupational Therapy ( also see Edinburgh City , Midlothian, East Lothian , West Lothian )
Faith based organisations ( see Spiritual Care Services or Local Interfaith Forum )
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
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 ( 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
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.