www.england.nhs.uk

Chair: Dr Rod Kersh Consultant in Medicine for Older People Doncaster and Bassetlaw NHS Foundation Trust

Accessing Peer Support Workshop

www.england.nhs.uk

A sociable approach to professional development

Vanessa Garrity Director, Sociable Angels Ltd Alex Irvine Advanced Nurse Practioner, Leeds & York Partnership NHS FT Presentation

Sheffield Dementia Involvement Group

SHINDIG

Beverly Graham Dementia Support Worker

Alzheimer’s society Sheffield

SHINDIG is a place where: People living with dementia (and family carers) can

share their experiences of memory problems and of local services

Organisations in Sheffield can come and listen to the

views of people living with dementia (and family carers)

Current funding support from DEEP

Essential Ingredients • City centre location • Lunch on arrival • Facilitators – skilled and novice • Small break out rooms • Preference of activity group • Topic questions don’t rely on reflection • Focus on valuing people’s contributions over

the outcome – having fun • The people who give up their time and

attend

Respect

• Not asking people to attend something at the very last minute.

• Following up with written information/feedback on the result of the discusssions.

• Helping people to feel that their contributions are valued and worthwhile.

• Be prepared to consider topics/issues that are raised by people with dementia-often there are unexpected outcomes.

Making Allowances for Dementia

•Active involvement rather than lots of presentations and listening •Topics not too conceptual or reliant on reflecting on the past •Prompts can be helpful as well as writing discussion points on a flip chart as a reminder •Allowing enough time so people don’t feel rushed and have enough opportunity to contribute

• Atmosphere to be friendly- not too stuffy.

• Staff to be prepared to step out from their professional/academic self.

• Being able to have a laugh-sometimes about memory and forgetting things.

• Being able to listen and respond to upset sometimes.

• Small groups work best.

Atmosphere

Supportive

• Friendly • The choice of whether to remain with family

carer or be in group with other people with dementia.

• Lunch and refreshments • Enabling people to tell their stories-being allowed

to go off topic. • Facilitators who know the person can help remind

the person of things they have said in the past.

SHINDIG Programme

12.45 Arrival, registration and group choice 13.00 Lunch 13.30 Large group welcome 13.40 Small group activities 14.45 Small group evaluation 15.00 Large group feedback and thank you 15.15 End

Topics • Experience of GP

services • Hints and tips on

living with dementia • Experience of

memory services • Dementia Friendly

Communities • Engaging with iPads • Choosing topics for

future SHINDIGs

Feedback/evaluation

• Informal evaluation takes place after each Shindig.

• Thumbs up/ Thumbs down used whilst people are still in small groups

• Written reports made available to the group at Shindig .

• Reports also available on the Shindig website: • http://shsc.nhs.uk/about-us/get-

involved/sheffield-dementia-involvement-group-shindig/

Peer Support opportunities for people with dementia. 25 June 2015

@HINSouthLondon

• Health Innovation Network is the Academic Health Science Network (AHSN) for South London

• The Government has established 15 AHSNs nationally

• AHSNs have 4 key objectives:

About Academic Health Science Networks

Focus on the needs of

patients and local

populations

Speed up the adoption of

innovation into practice to

improve clinical outcomes and

patient experience

Build a culture of

partnership and

collaboration

Create wealth through co-

development, testing, evaluation, early adoption and

spread of new products and

services

Shaped through Clinical Programmes and Cross-Cutting themes across South London:

Our work at Health Innovation Network

Diabetes

Dementia

MSK

Alcohol

Cancer

CLINCAL PROGRAMMES

Industry Partnerships

Patient Safety Collaboratives

Informatics

Patient Experience

Education & Training

CROSS-CUTTING THEMES

Patient & Public Involvement

Working across South London

Dementia Programme Who we are

Senior Responsible Officer David Bradley, Chief Executive, SWLSTG

Clinical Director Hugo de Waal, Consultant Psychiatrist

Associate Clinical Directors Aileen Jackson – Commissioning Manager Catherine Gamble – Head of Nursing Academic Dev SWLSTG

Programme Manager Rebecca Jarvis

Project Managers Amy Semple & Linda Briant

Darzi Fellow Laurence Cowderoy

Innovation Fellow Amanda Buttery

Innovations in Dementia Nada Savitch

Dementia Peer Support Project

Background to the project Born out of engagement exercise at launch Routinely advocated in policy and strategies across the UK Supports the Government’s Detection Agenda: Post-diagnostic support Need reinforced by mapping exercise: variation across South London

• provision, access, specific groups (BAME, younger people etc), exit plan

Not all want a structured approach to peer support – just opportunities to meet others in a similar situation Most want to continue taking part in social groups & activities - but dementia can lead to social isolation Lots of resources but spread across multiple organisations Challenge: Funding and weak economic evidence

Dementia Peer Support Project

Our whole system approach to peer support Specialist & structured peer support (usually time limited)

Dementia cafes or informal clubs where people can drop in to meet others in a similar situation

Community groups, clubs & societies which are able to accommodate people with dementia

Up-to-date information for people & carers about local services and supports – how to access them

Dementia advisors / navigators who are able to support people through the ‘system’ – connecting them to their communities.

Community organisations and specialist peer support groups both have an important role to play in supporting people with dementia to live well.

Dementia Peer Support Project

Introducing our Resource Pack

Who is it for?

Statutory, voluntary, and community sectors

Those involved in setting up, running or involved in peer support groups or social /activity groups which include people with dementia

Older people groups, clubs etc. that want to support people with dementia better

People who commission or fund services for people with dementia

Dementia Peer Support Project

What is in it?

Evidenced based guidance

Statistics

Relevant Policy & Research

Case studies Films

Feedback and Spread

European’s Foundation Initiative on Dementia

South London

2330 Downloads

Dementia Peer Support Project

Summer 2015 updates to the resource pack

Watch our films on peer support

Views from people with dementia and their families https://vimeo.com/123402358

Views from facilitators and volunteers https://vimeo.com/123098508

Contact

Amy Semple Project Manager – Dementia 020 7188 7188 x 55405 a.semple@nhs.net View the Resource Pack: http://www.hin-southlondon.org/resources/peersupportpack

Innovations in Dementia

Rachael Litherland Director, Innovations in Dementia

• 50 involvement groups across the UK

• National groups in Scotland and Northern Ireland

• Groups are all shapes and sizes

• Local, regional and national influence

• People with dementia as contributors, participants and citizens

• Developing a national dementia movement

• Clear Voices • Face it Together • EDUCATE • Lancashire Dementia Voices • Friends Together • Hope • Forget Me Not • Over the Rainbow • Positive Dementia Group • SHINDIG • Camden Minds

“What it says on the tin…”

DEEP offers groups…

• Building connections between groups, mapping interests and skills • Brokering national opportunities • Collating and developing good practice • Being a central repository of the work, ideas and solutions of groups and

keeping groups updated about each others work • Funding local groups and initiatives who have ideas about increasing the

involvement of people with dementia • Setting expectations about how others will engage with and involve people

with dementia effectively and supportively

Sign up to the Call to Action at http://www.dementiaaction.org.uk/dementia

words https://vimeo.com/122528299

Impact of collective engagement

“Being part of a network gave our members the confidence that they have a right to have their voices heard.”

• Tangible chances on national policy and guidance e.g. British Psychological Society, House of Lords

• Changes in culture at national meetings and events about dementia

• DEEP resources and guidance (via www.dementiavoices.org.uk) are

being used in practice

• Voices of people with dementia are louder and include a wider range of perspectives

• And hundreds of local, regional and nationwide impacts from the day to

day work of the groups

Mechanisms for continuing involvement

• Relevant and interesting opportunities, shaped by people with dementia

• Accessible (and peaceful) buildings, agendas, frameworks, values • Willingness of other organisations to adjust their methods and

approaches • Peer support, building of confidences • Shared roles, collectivism • One to one support - e.g. ‘buddies’

http://dementia.onourradar.org

www.england.nhs.uk

• Thank you to all our speakers • Presentations will be available on the SCN website – the

link will be emailed to you along with a link to the evaluation survey

• Lunch is available in the main conference room from 12:30 • Please visit our stalls and poster presentations • And learn to tweet at the Twitter Café in the Presidents

Suite!

Close and reflections