Caring for the Carers - working in partnership to

achieve person centred care

Anne Marie Tunney

Caring for the Carers - working in partnership to

achieve person centred care

Anne Marie Tunney

The Partnership ApproachThe Partnership Approach

NHSCT

Stroke Specialist Nurse (Patricia)

Carer’s Co ordinator (Ann)

Ward Manager (Siobhan)

The carers

StrokeSurvivor

Stroke Co ordinator (Shelagh)

FONS& BurdettTrust forNursing

UUPractice Development Nurse (Anne Marie)

NICHSA

Funding

Personal experience

Where did the idea come from?Where did the idea come from?

“There is plenty of help available for

those who have had a stroke but little

available for carers”.(Carer of a stroke survivor)

Next steps………………… Next steps…………………

Support

Establish need Expertise

Function

Funding

Carers support group

Next steps……Next steps……

1

Establish need- Questionnaire

- Research

- NICHSA

2

Funding and expertise- FONS – “Patients

First Programme”- £3000- Services of

facilitator- Workshops

(London)

- Practice Development Nurse

- Stroke Specialist Nurse

3

Support- Steering Group

- Working Group

The research...... Benefits of a support groupThe research...... Benefits of a support group

Improvements on

measures of caregiving

burden

Reduced depression

Increased morale

Decreased sense of

loneliness

Increased knowledge

Chou, Lui & Chou, 2002Cook & Laris, 2000

Causeway Stroke Carers GroupCauseway Stroke Carers Group

Values Clarification Exercise – The VisionValues Clarification Exercise – The Vision

The purpose of the Causeway Carers Support Group is

to meet together with people in a similar position and to

support and receive support and learn from each other.

This will help us to cope by relieving tension, having

fun and giving us ‘me time’. New friendships will be

formed through chatting and interaction and advice and

shared information from visiting speakers will help us

to grow together.

Function of the groupFunction of the group

Social interaction

PR

Educational

Various speakers

Time to ask questions

Discussion

Support

Companionship

Sharing of ideas

Sharing of experiences

Learning from each other

Quarterly Newsletter

Editorial board – group

Up to date info/recipes

Local radioAdvertising group

Posters and leafletsPublic areas

The activities…………………..The activities…………………..

- Reflexology session

- Shopping trips

- Visit to Garden centre

- Scone baking

- Carers (NI) – Benefit awareness for carers

- Health checks – NICHSA

- Communicating with stroke survivor – SALT

- Stroke awareness week

- Ward Manager – action planning

- Carers wishlist

- Experience based questionnaire and listening lab

Educational Social Discussion

Stroke Awareness WeekStroke Awareness Week

The Carer Wish List……………The Carer Wish List……………

“I wish I could have my life

back the way it was before the

stroke”

“We had planned a trip to Canada

and I wish we could go”

“Sometimes that my sister could be more mobile – it’s

hard to see her getting weaker”

“I wish I could be wife, mother and

friend today instead of carer”

“I wish I was not so angry”

“I wish I had more help to ease my

burden and have a few hours to

myself”

“I wish I had space to myself”

“I wish I had time to play

with my son”

“A little free time to relax… someone to

speak to when feeling down…”

“More support and information

in the early days”

“I would like 5 hrs- 1 day a

week to myself”

“As an only child I wish I had more family members

to help if needed”

CARER’S WISHLIST

Experience Based Design ExerciseExperience Based Design Exercise

NHS Institute for Innovation and Improvement (2009)

- Opportunity for carers to share experiences and explore how improvements could be made

- Uses patient and staff experiences to design and improve health care

- Four key aspects -

Capturing the experience – tell the story

Understand the experience – from a different perspective

Improve the experience

Measuring the improvement

- Various tools- Experience based questionnaire

- Listening Lab

First contact (GP, ambulance, A&E)

Admission Inpatient stay (visiting)

Discharge Follow up and support

Attitude of staff

Information provision

HappySupportedSafeGoodComfortableScaredWorriedLonelySadOut of controlHelplessHopeful

HappySupportedSafeGoodComfortableScaredWorriedLonelySadThankfulFrustratedAngryOverwhelmed

HappySupportedSafeGoodComfortableScaredWorriedLonelySadExhaustedExpensiveNuisanceLost

HappySupportedSafeGoodComfortableScaredWorriedLonelySadConfusedScaredResponsibleAngry

HappySupportedSafeGoodComfortableScaredWorriedLonelySadUselessOn my ownResponsible

HelpfulDistantUnderstandingDisregardingCaringAggressiveAttentive

HelpfulSparseEmbarrassedPoorUnapproachableConfusingHelpless

Write your own words here

Why did you feel like this?

Experience questionnaireExperience questionnaire

Listening LabListening Lab

Taped – written consent

Thematic content analysis

Themes identified………………Themes identified………………

A sense of loneliness –

“I was just on my own”

Lack of information provision –

“I just wanted someone to come and talk it over – was he going to die?”

Effect of stroke on relationships –

“Things will never be the same again”

Effect on the carer –

“ I just cried and cried”

Loss of privacy –

“District nurse at the backdoor, doctor at the doorbell, carer trailing teabags across the floor, whilst I try to eat breakfast with my family”

EvaluationEvaluation

Session Evaluation

“it’s time out for me to meet people in the same situation”

“we all understand each others problems and heartaches’”

Overall evaluation

“When we first met and I looked around the room… wondered how we would get on…now one big family’”

“benefits of sharing with others who understand – not just being ‘a grumpy old woman’,

“creation of a bond of friendship”

“being better able to cope with caring role”

“social benefit of getting out and about”

Sustainability ……………… The FutureSustainability ……………… The Future

• Funding• Self funding• Members proactive

• Support• Personal and Public Involvement (PPI) strategy for NHSCT• Presentations

• Carers Strategy Group (NHSCT)• Practice Nurses (NHSCT)• Listening and Learning together (Patient & Client Council)

• Roll out to other areas of NHSCT

• Membership• Increased• Creation of database of carers

• No men!