Support if you are a caregiver and getting a break from caring

Examples of Support

Carers rights

Carers assessment

Carers training

Young carers

Employment issues


Welfare rights


Planning ahead

Power of Attorney


Wills & testaments

Keeping healthy

Condition specific information


Financial planning

Support for mental health & wellbeing

Key Services and People

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

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 )

Health & Community Care Services ( Edinburgh City , Midlothian , East Lothian , West Lothian )

HD Support Groups

Young Carers’ Services ( Lothian , Edinburgh City , Midlothian , East Lothian , West Lothian )

Mental Health Services e.g. GP, Clinical Psychology, Psychiatry , Community Mental Health Team ( Edinburgh City , Midlothian , East Lothian , West Lothian )

Scottish Huntington’s Association Carers’ Forum

Faith based organisations ( see Spiritual Care Services or  Local Interfaith Forum )

Hospice/ Palliative Care Services

Community Navigator Service ( 0131 443 3387 )

Scottish Huntington’s Association Short Breaks Fund ( via HD Specialists )

Integrated Multi Agency Arrangements, Referral Pathways and Resources

HD Specialists or Specialist Youth Advisor will undertake assessment of need, referring to Social Work ( Edinburgh City , Midlothian , East Lothian , West Lothian ) for a statutory assessment when appropriate and signposting carers to the network of services within each local authority.


Support should be consistent with the Carers ( Scotland ) Act 2016

Health & Social Care Partnerships ( HSCPs ) should ensure that training & education is available to carers


Carers and their families are well connected  to support services and feel adequately supported throughout their experience

National Care Framework for Huntington's Disease