Moving to supported accommodation and long term care

Examples of Support

Help with choosing a care home

Managing transitions

Financial planning

Respite prior to move to long term care

Ensuring care staff have sufficient info and training on HD

Access to specialist equipment in long term care

Ensuring specific nutritional needs can be met

Supporting staff to understand changes in behaviour

Key Services and People

HD Specialists

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

Social Work

Care Inspectorate

Care Homes

Advocacy

Community Occupational Therapist

Community Physiotherapy

Integrated Multi Agency Arrangements, Referral Pathways and Resources

A number of supported accommodation and care home providers are identified and commissioned to provide specialist care for people with symptoms of HD. There are clear arrangements for multi-disciplinary care and care provided in line with National Nursing Home Contract .

There are clear liaison arrangements, training, support and capacity building with the specialist core team.

Nursing homes must liaise regularly with their named HD Specialist where there are changes or new concerns about the person with HD.

Checklist to be provided to enable clients to choose the best provider for their needs.

Families supported by HD Specialist or Care Manager to view care homes to inform their decisions.

Standards

Care is consistent with the Health & Social Care Standards for Scotland

Every person living in a care home receives regular reviews, with an annual review by a local specialist team as a minimum to ensure health & social care requirements are being met.

HD Specialist or specialist team to be advised when there are any changes to care requirements.

In a long term care setting all aspects of care should comply with the HD Framework.

Outcomes

People living with HD and their families have a positive experience of long term care and are satisfied with their quality of life.

National Care Framework for Huntington's Disease