Family Group Conferencing family solutions for family problems

1. Family Group Conferencingfamily solutions for family problems Peter Haughey Midlothian Dementia Demonstrator Site, Midlothian Community Care Partnership

2. Background • Recent Alzheimer Scotland figures indicate that there are currently over 86,000 people in Scotland with dementia – 3,200 of whom are under 65. Many others are yet undiagnosed. • Estimates are that there is approximately 1,200 people diagnosed with dementia in Midlothian. • Numbers are expected to double in the next 25 years –with the levels of resourcing currently available the existing levels of support will be unsustainable. Many services are already under pressure.

3. Natural family supports • Traditionally internal family networks would have been called upon for support in times of crisis and illness. • However, with the increase in the availability of external systems of support, the role and responsibilities of families have often been reduced by the intervention of professionals and many families have been disempowered. • A strong belief that the state and local authorities have full responsibility for family issues has developed for many people in society resulting in an increased dependency.

4. How do we shift the power back to families and do more with less?

5. 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 worldwide. Introduced into the UK in 1992. • Approximately two thirds of Local Authorities in the UK have used or are using FGCs to some extent, primarily in Education, Children’s Services and Youth Offending. • Over recent years there has been a limited, but increasing use with adults – domestic violence, older people and people with disabilities

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 and to control, as much as is possible, the direction of their own “dementia journey” with the support of their existing natural networks of support. • Format to have their voice heard through the involvement of their own natural support networks. Family of connection rather than necessarily family of blood! This may include the support of advocates. • Empowers families to make their own decisions on behalf of their “whanau” member if that person is unable to decide for themselves.

7. How does FGC work? • FGC is a structured approach that puts families at the centre of the planning and decision making that affects them. • FGC empowers them to develop their own support and care plans with the role of professional services being to: • provide good information prior to the FGC; • to provide targeted support where family identify specific needs. • The FGC Co-ordinator is independent from statutory bodies. He/she consults widely amongst the people identified by the person with dementia or their carer/advocate as being integral to the plan and with professionals involved. This takes place prior to the conference meeting. • 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 transferring the model to people with dementia At what stage of the dementia journey should FGC referrals be made? • Initial findings are that an FGC intervention soon after diagnosis is more effective in coordinating family support networks rather than further on in the Dementia journey. Demographics • Modern families can be scattered. Wider interpretation of family is required- the individuals immediate network of support needs to be explored. Many older people have diminished networks of support. Many of these people will also be in the older age group. Change in culture for professionals • This can often be an issue for Professionals who lose the ability to develop a care and service plan based on their professional assessment of the issues as decision making is transferred to the “whanau” group.

9. Midlothian’s pilot • Independent facilitators commissioned. Kalm Solutions have been contracted for an initial 18 month period as FGC Coordinators. • 10-12 initial FGCs agreed for people at varying stages of dementia. To provide the initial FGC conference and a review if and when requested by family. • To establish an Family based decision making process which interfaces with the work of the Community Care of the Elderly and Health Dementia Teams. • Guidance and training are being provided for staff across Health and Social Work • Independent evaluation commissioned from Firefox Research, Queen Margaret University.

10. Midlothian’s approach • To empower and assist the individual with dementia and their family/natural supports to develop their own outcomes focussed solutions to family issues. • To provide support and information to assist the individual and their family/natural supports to develop their own support plan. • To have a dedicated point of contact to ensure advice and support is readily available as required. • To support the individual and their family/natural supports to identify appropriate services at a time that is right for them- to encourage Self Directed Support if practicable.

11. Initial referral criteria for pilot • Diagnosis of dementia - initial difficulties are becoming apparent and additional support is required from outwith the immediate home environment. • The individual with dementia has a supportive network of support. • There has been minimal professional involvement to date. • Willingness by family to develop their own support/care plan with advice and information from professionals including Alzheimer Scotland Link worker.

12. Current situation and future plans • 10 Pilot FGCs have now taken place. • Evaluation by QMU is currently underway. Focus groups, involving professionals and family members involved in the pilot have been conducted and findings are currently being evaluated. • Evaluation report and conclusions regarding value of the FGC programme for people diagnosed with Dementia is expected by early July. • Assuming independent evaluation report is positive then Midlothian Adult Services will continue with the model with an intent to investigate whether it could be used for older people more widely and possibly other client groups. • The FGC process is being incorporated into the care pathway for the new Single Dementia service.