A Vision for the Future

Henry Simmons

7 November 2008

A Common Story

68 year old manCommunity ActivistRetired lecturer

Memory problemJust part of growing oldGoes to GP

GP agrees part ofgrowing old

Goes home relieved

1 year later

Returns to GP with wife & daughter

MemoryMoodBehaviourIsolation

Treats fordepression

Home again

Returns to GPWith wife and daughter

Critical incident- Lost and distressed

Serious memory problemLow MMSELow MoodIsolationBehaviour

6 months later

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

GP refersto specialist

6 months laterdiagnosis of dementiaconsultant too far onfor medication

Social workerCPN

Refer to day care30 place centre2 days per week

2 hours home supportTuesday morning

• Active citizen• Empowered• Valued• Engaged• Articulate• Included

• Patient/client• Stigmatised• Disempowered• Isolated• Stressed• Alone

In 2 years he has gone from

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 andhealth care if we are to avoid many more storieslike this

Tinkering not enough – transformation is absolutenecessity

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

Balance of Support

Family & Natural Supports Social Care Health

Balance of Power and Control

Health Social Care Person

• 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

The story should be

68 year oldworriedaboutmemory

Contacts localAlzheimerScotland office

Has early meetingLooking at information/adviceReceives basic info,memory skills/techniques support

Visits GP – saysworried he mighthave dementia

Meets specialistearly diagnosisand treatment

Refers toPDSCPN

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

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

NaturalSupports

andCommunity

Health & SocialCare System

PersonIndividual

Plan/ Budget

Balance should be

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

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

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

Strategic Options

CURRENT COMPETENCE AND SERVICE

MA

RK

ET

DE

MA

ND

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

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.

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.

A Vision for the Future

Henry Simmons

7 November 2008