MIDLOTHIAN COMMUNITY CARE PARTNERSHIP Whose Life is it Anyway?

1. MIDLOTHIAN COMMUNITY CARE PARTNERSHIP Whose Life is it Anyway? (Family Solutions for Family problems) Jane Fairnie and Peter Haughey

2. Background • Scottish Government figures indicate there are currently over 80,000 people in Scotland with dementia – 2,300 of whom are under 65 • This is set to at least double over the next 25 years • Numbers are increasing – Resources are diminishing

3. Natural Family Supports • For thousands of years individuals have called on traditional networks of support • Over the past 100 years there has been a massive growth in the caring professions, specialists and external systems of support • The roles and responsibilities of families have often been diminished by the intervention of professionals and families have been disempowered • Seeking external support has become the norm for many people and a strong sense of entitlement has developed • As numbers of people with dementia increase can we continue to provide the same levels of care and support ?

4. What can we do? • The ideal - Cradle to Grave professionally provided care and support for all • The reality – More with less

5. So! Let’s talk about...... FAMILY GROUP CONFERENCING • Initial system developed in New Zealand in the late 1980s to acknowledge rights of Whanau/Families to make their own decisions and plans regarding their own family members (Legislative framework – CYP and Families Act 1989). • Now used in 56 countries worldwide • Introduced into the UK in 1992 • Approximately 2/3rds of Local Authorities have used or are using FGCs to some extent, primarily in Education, Childrens Services and Youth Offending • Over recent years limited, but increasing use with adults – domestic violence, older people and disabled people

6. Families of connection – not just Families of blood Process fits with Adults with Incapacity Act - emphasis on rights of individuals to make their own decisions - to have their voice heard through the use of advocates - empowers families to make their own decisions on behalf of their “whanau” member if unable to decide for themselves

7. Key points • FGC is a structured approach that puts families at the centre of the planning and decision making that affects them • The FGC Co-ordinator is clearly seen as independent from statutory bodies • Professionals attend to provide information to the family then withdraw. It must be a family plan designed by the family and therefore owned by the family

8. Challenges for transferring the model • Post diagnostic process – at what stage? • Demographics – families can be scattered • Many older people have vastly diminished networks of support • Change in culture from dependency to empowerment

9. Midlothian’s approach • To empower the individual and their family/natural supports to develop and own outcomes focussed solutions to support • To have a dedicated point of contact • To empower the individual and their family/natural supports to develop their own support plan • To support the individual and their family/natural supports to identify appropriate services at a time that is right for them

10. Midlothian’s approach • To ensure that the individual and their family has considered advance planning which includes end of life care • To establish a process that has regular reviews built in and interfaces with the work of the Community Care of the Elderly and Dementia Teams • To independently evaluate the pilot

11. Midlothian’s approach • 12 month pilot • Process mapping • Guidance document for staff across Health and Social Work • Commission service from Alzheimer Scotland • Recruitment of Co-ordinator • Selection of participants based on identification of risk – (ASP, carer breakdown, advance in condition etc) • Formal evaluation by independent evaluator