Improving experience of care:

How patient and carer leaders can

make a difference

Content of this session

• Introduction

• Stories from patient and carer leaders of improving experience of care

• Panel and audience discussion

We set out to answer three questions: • Do patients and carers as leaders make a difference in the attention

that experience of care gets alongside clinical effectiveness and

safety?

• Can patient leaders influence NHS organisations to act on patient

and carer feedback to improve experience of care?

• What do NHS organisations need to do to make this

approach work?

What did we do? • Co-produced: conception; specification; project phases; learning.

• Three interlinked phases:

– Identified themes from Tweetchat with 350 & workshop with 70 – Gathered18 case examples from 17 NHS organisations

– Advisory Group selected 4 case examples to be visited for more detailed study; thematic analysis identified overarching critical success factors and building blocks.

• Advisory Group discussed and agreed key learning points and conclusions.

What did we find out? • Do patients and carers as leaders make a difference in the attention that

experience of care gets alongside clinical effectiveness and safety? YES

• Can patient leaders influence NHS organisations to act on patient and carer feedback to improve experience of care? YES

• What do NHS organisations need to do to make this approach work? – Invest in patient leaders; Put robust feedback mechanisms in

place; Develop the culture and systems to act on feedback.

• Underpinned by ten building blocks that provide a basis for success, including a set of eight key roles.

A patient leader perspective

Steve Sharples,

Chair, Patient Leaders Expert Advisory Group

What happened in the past?

• Within the NHS there was a culture of the patient not

being listened too

• The clinicians knew what was best

What has changed?

• Patients are now being allowed an opinion

• Some 40 Patient leaders made a huge contribution at our

workshop

• The Patient Leaders Advisory group was set up

What happened next?

• The Patient Leaders Advisory group were shown 18 projects.

• All of these showed patient power not only at its best but

at its wisest and most rewarding

• The group selected the 4 projects that we thought were

best for the patients and their families and carers

Midlands and Lancashire Commissioning

Support Unit (CSU)

Margy Woodhead

Lay Member for Public and Patient Involvement

Stoke-on-Trent Clinical Commissioning Group (CCG)

David Hardy

Audley Health Centre Patient Participation Group (PPG)

Newcastle North Locality Group

Patient Congress, North Staffordshire CCG

Lucy Salt

Patient Congress

North Staffordshire CCG

For more information please contact

Lesley Goodburn

Midlands and Lancashire CSU

07545 423379

Lesley.goodburn@staffordshirecss.nhs.uk

Shropshire Clinical Commissioning Group

(CCG)

“Ambassadors for their Generation”

Making a positive change in people’s lives…

https://www.youtube.com/watch?v=TRvAgJV7ddM

TOP TIPS

• Have an open mind to

doing things differently.

• Listen… really listen and

commit to act on what you’ve heard.

• Support us and we will

give back with time,

enthusiasm and skills

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