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

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

HD Clinic ( HD Clinical Lead, HD Specialists, Specialist Youth Advisor, Financial Wellbeing Officer )

Mental Health Support

Health & Community Care Services ( North Lanarkshire , South Lanarkshire )

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

HD Support Groups

Advocacy ( North Lanarkshire ,  South Lanarkshire )

Assistive Technology ( North Lanarkshire , South Lanarkshire )

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 ( e.g. Lanarkshire Carers Centre, Carers Trust , Carers Scotland , Shared Care Scotland , Care Information Scotland )

Emergency Services

Driving Assessment Centre

Occupational Therapy ( North Lanarkshire  ,  South Lanarkshire )

Faith based organisations ( see  Chaplaincy Services or  Interfaith Forum )

GPs

Speech & Language Therapy / Augmentative & Alternative Communication

Wheelchair & Seating Services

Hospice/ Palliative Care Services ( Also see: St Andrew’s Hospice , Strathcarron Hospice , Kilbryde Hospice , The Haven  )

Voluntary Action Service Locator ( North Lanarkshire , South Lanarkshire )

Well Connected Programme

Men Sheds

Making Life Easier

Scottish Huntington’s Association Financial Wellbeing Service

The multi-disciplinary team will be involved in developing individual packages of support that meets the health and social care needs of each person. In situations where Self Directed Support is appropriate this will be led by Social Work.

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.