Impact on recall for adults with learning disability in the context of capacity to consentVal Hall (University of Brighton), Suzanne Conboy-Hill (Sussex Partnership), Dave Taylor

(Imperial College)

Experts by Experience –

no such word as can’t!

And what we learnt along

the way

December 2018

Impact on recall for adults with learning disability in the context of capacity to consentVal Hall (University of Brighton), Suzanne Conboy-Hill (Sussex Partnership), Dave Taylor

(Imperial College)

Nicola Smith, Team Springwell Expert by Experience

Lucy Westcott, Service User Participation Lead for

Learning Disability, SPFT

Jane Edmonds, Clinical Psychologist Lead, SPFT

December 2018

• We are going to tell you about 2 different

projects that involve experts by

experience at Sussex Partnership

Foundation Trust

• The Springwell Project

A co-production project involving people

with complex needs and behaviour that

challenges.

• The Learning Disability Research

Group.

• We want to tell you what we did and we

learnt.

The Springwell Project

Working together toward better engagement

People with a learning disability told

Sussex Partnership NHS

Foundation Trust (SPFT) that they

did not feel involved in their

specialist health care.

We wanted to find out what needed

to change so that people can be

more in control of their care.

Why did we start the project?

• We started with a small project led by 3

psychologists. We felt we should be involved in

engaging and empowering people to have a

voice

• We asked people with a learning disability what

we could do to involve them and give them a

voice.

• We were reminded about the model of host

leadership – cocktail party leadership.

• People with complex needs could tell us an

enormous amount but that we needed to invest

in this. Lucy will tell you more about this.

We wrote about this project in a paper called:

“Everyone thought I was a very very bad

person… no one want to know you like the

nurses and doctors”: Using focus groups to elicit

the views of adults with learning disability who

use challenging behaviour services.

Haydon‐Laurelut, M. et al (2017). British Journal of

Learning Disabilities

The Springwell Project was our

response to what we learnt

The Springwell Project brought

together a group of people with a

learning disability to share their

experiences of using specialist

health care services.

They all used services and had

additional complex clinical needs.

Introduction to Springwell film

https://youtu.be/MiHpRDD_HG4

The group called themselves Team

Springwell.

Team Springwell did lots of work to tell

SPFT what learning disability health

services are like for them.

They worked out how SPFT can make

services better for the people who use

them.

• Referral support films

• Easy read referral support information pack

• Springwell 5 Good Engagement Standards

• Team Springwell Experts by Experience Group

Project outcomes

Springwell Referral Support Films

• Made with Team Springwell

• Explain specialist learning disability health

services available and how to access them

• Use peoples own voices to reinforce the

importance of involvement and engagement

in their own care

• Help people who use services and their

families and carers to be prepared to be

involved in their care

• Show ways that staff, support workers,

carers, family can help

• Support workshop/training for staff

Referral support films continued…

Our service https://youtu.be/z3tQYutS5Uw

Initial assessment role play https://youtu.be/8k4SD6_QZR8

Questions and Answers https://youtu.be/E-STvofoNNU

• Developed with Team Springwell

• Sussex Partnership NHS Foundation

Trust has pledged to implement the

standards across Sussex

Our standards https://youtu.be/QsMQ9NAN5Fw

4 Standards for Good Engagement

Team Springwell Experts by

Experience Group

Team Springwell are now a

permanent group of skilled

experts by experience in

specialist learning disability

health services.

Supported by newly

created Learning Disability

Service User Participation

Lead role.

So far Team Springwell has:

• Co-run workshops for SPFT staff and other

staff who work with people with a learning

disability and for experts by experience in

other areas.

• Worked with SPFT Clinical Academic Group

for Learning Disabilities on their Mental

Health, Complex Physical Health and

Behaviour Support Pathways.

• One team member has gone on to do our

Trust’s Expert by Experience training

• Another spent a morning with the SPFT

Chief Executive Sam Allen finding out

more about the Trust and telling them

about Springwell.

• A Springwell member was also part of a

short film about Experts by Experience

made by SPFT.

Achievements

• Exploring Engagement workshop

Our project was one of 8 out of 169 granted funding by NHS England to celebrate and share our learning.

• Gold Positive Practice Award ‘Inspired to Improve’

What’s next?

• Continued consultations

Autism Pathway and Easy Read Nutrition Advice resources are some of the subjects Team Springwell has been asked to look at next.

• Service User Engagement workshop/training sessions

Co-run with Team Springwell, introducing the SpringwellStandards, Access Pack and films, project findings, sharing best practice, discussing barriers and solutions to meaningful engagement.

Rolling out across Community Learning Disability Services in Sussex.

• Evaluation of Springwell Project and dissemination of results

Learning Disability

Research Group

Who’s Who in the Learning Disability

Research Group (LDRG)

• We started as a group in 2012

• In the group are Aldingbourne

Powerful Trainers Nicola

Smith, Anthony Wake,

Rebecca Harrison, John

Warwick (Support Worker)

• Researchers / psychologists

Why we need to include people with a

learning disability (LD) in our research

• only a small amount of LD research in this country.

• Most of it is about people with LD who also have disorders. We want to make sure other issues are thought about

• It’s often difficult for people with LD to find out about research studies

• The research needs of people with LD are not usually thought about in studies.

• There are not may people with LD in research teams.

Learning

Disability

Research Group

Challenges

• Information is often complex

• Too many abbreviations like LDRG

• Inaccessible charts & diagrams

• Meetings too long

• Rooms uncomfortable

• Involved Powerful Trainers from

the start.

• Planned regular meetings

planned in advance.

• Tea and coffee.

• Group of trained people – can

ask experts for advice.

What we did

• Easy read agenda and minutes

• Got to know people over time,

no sudden introductions

Clinicians

• Better ideas – more people and

more experience

• Learning and challenges means

we have to stop and think

• Making things clearer helps us too

• Not making assumptions about

what matters

• Not just academic views

What service user inclusion means to us

Powerful Trainers

Working together makes better research

Gives us a voice

You can’t do your work without us

Learning from each other

Better together, not on different sides

Not tokenistic – full members

Being included from the start means creative

ideas

• All research and audit proposals must

come to our group for approval.

• We ask for updates and a final

presentation.

• We provide Patient and Public

Involvement (PPI)

• We hold a Learning Disability Research

Seminar every 2 years.

It is co-produced and presented by

Powerful Trainers

How it works

• Evaluation of a tool to help understand mental health

conditions in young children with learning disability

Our response: is it useful to label young people?

• Exploring ideas about homliness using photographs

Ethics of photographing in group homes

• Looking at standardising interventions following a

sensory assessment in people with profound LD and

autism

We loved this project but felt we were not the right group

to provide PPI (patient and public involvement).

Some examples

Keep SafeAn example of collaborative practice development and research by, and with, people from the learning disability community and clinical psychologists and other practitioners/researchers.

• We developed accessible, engaging Keep Safe intervention for young people 12 years plus who display harmful sexual behaviour– model, activities, resources

• Collaborated in research planning and doing for the feasibility study

Keep Safe: an example of collaborative practice development and research

• Participated with training• Made a video of our work

for the websitehttps://www.kent.ac.uk/tizard/sotsec/ySOTSEC/ySOTSEC.html

• Celebrated the Keep Safe manual completion and first public Keep Safe training.

• Reflected on what we’d learned to share with others -see poster; collaborative paper nearly finished

• Collaboration: working on research as

consultants

• Research colleagues: learning about

research to become collaborators & co-

authors on publications

• Service user initiated research

Where we want to go from here

Thank you to Dr Suzanne Conboy-Hill developed this work and wrote much

of this presentation with Powerful Trainers

Learning

Disability

Research Group

For more information about Team Springwell and Service

User Participation for Learning Disability in Sussex:

https://www.sussexpartnership.nhs.uk/springwell