1. A Vision for the Future Henry Simmons 7 November 2008

2. A Common Story

3. 68 year old man Community Activist Retired lecturer Memory problem Just part of growing old Goes to GP GP agrees part of growing old Goes home relieved

4. 1 year later Returns to GP with wife & daughter Memory Mood Behaviour Isolation Treats for depression Home again

5. Returns to GP With wife and daughter Critical incident - Lost and distressed Serious memory problem Low MMSE Low Mood Isolation Behaviour 6 months later

6. 18 months ago Active in Community Council Allotment Church Activist Local network of friends Supportive family Now Never allowed to leave house Lost all connections Rare visits from friends Isolated Inactive Frightened Worried Highly stressed family

7. GP refers to specialist 6 months later diagnosis of dementia consultant too far on for medication Social worker CPN Refer to day care 30 place centre 2 days per week 2 hours home support Tuesday morning

8. Active citizen Empowered Valued Engaged Articulate Included Patient/client Stigmatised Disempowered Isolated Stressed Alone In 2 years he has gone from

9. Does it really need to be this way? There is a systemic failing in our system of support We need to transform our whole system of social and health care if we are to avoid many more stories like this Tinkering not enough – transformation is absolute necessity

10. What are the key lessons from this story? Lack of awareness Avoidance and denial (stigma) GP collusion Lack of control No balance of paid and natural supports No attempt at sustaining network Ongoing withdrawal and isolation Builds up critical points/crisis Block purchased service – too late

11. Balance of Support

12. Balance of Power and Control

13. No connection between natural resources and support Disconnects person’s life from needs Service supports operate in isolation 2 hours support in right hands worth 20 in the wrong

14. The story should be 68 year old worried about memory Contacts local Alzheimer Scotland office Has early meeting Looking at information /advice Receives basic info, memory skills/ techniques support Visits GP – says worried he might have dementia Meets specialist early diagnosis and treatment Refers to PDS CPN

15. Post Diagnostic Services Support coming to terms with diagnosis Develop understanding of abilities and strengths Figures out essential lifestyle features and plan the journey Build ongoing connection strategies Iron out risks and plans around weaknesses Support family, friends and community contacts

16. We need to have a vision Of a person In a community With lots of resources and supports With hopes and aspirations With potential to enjoy a good life

17. Natural Supports and Community Health & Social Care System Person Individual Plan/ Budget Balance should be

18. Personal Planning and Support Light touch early support Individual budget Design creative forward plan Work in line with existing funds Support development and creation Plan the journey, using all resources available

19. This is personalisation It is not about direct payments or money It is not about opting out of system and employing staff It is not about believing in fairy tales It is not impossible It is not something for other groups It is not a fad

20. It is about A basic human right to self-determination Starting with one person at a time Unlocking resources from failing system Planning with similar budgets/funds Synergy between paid and natural supports Avoiding the systems whirlpool Person, family, community

21. Strategic Options CURRENT COMPETENCE AND SERVICE MARKET DEMAND PERSONALISATION 1 Protect Do we stay the same It will pass It is a fad Keep growing what we have got Our service users like it 2 Expand Move into new areas Move into new client groups Keep growing, keep safe 3 Build onto Can we build on existing skills and services Can we learn new skills, develop innovation with what we have Can we do both and wait 4 Transform Do we stop, transform and fully commit to personalisation Provide only individual commissioned personal provision

23. Key Strategic Aims To embrace and campaign for people with dementia to be at the centre of the personalisation agenda To fundraise to extend and develop our range of post diagnostic support services using this model To bring our awareness raising, fundraising, policy, campaigning and local service development in line behind these aims.

24. Strategic Aims cont. To build on our work to improve and transform our existing services, shifting away from 9-5 block funded support towards personalised community support To align our reserve investment to identified priorities in order to ensure a synergy between local spend and organisational priority To support the development of innovative, creative and effective individual services in key areas where we have no presence led by the PDT.

25. A Vision for the Future Henry Simmons 7 November 2008