BLOG: Why is involving people with lived experience not universally embraced in the NHS?

“Being involved in this project has given me a purpose beyond my caring responsibilities.” (Lindsey)

Lindsey Stedman (parent / carer - Right), Jude Irvine (patient - Left) and KarenTaylor (Lead for Arts and Public Engagement - Middle) collaborated for the first time on the NIHR ARC NWL Improvement Leader Fellowship. As part of the programme, they developed a quality improvement project designed to improve experiences of care through diversifying lived experience representation and increasing opportunities for strategic co-production. Together, this learning created first hand insights into the challenges of working in genuine partnership to effect positive change in the NHS.

Policy context

High Quality Care for All (Darzi, 2008) articulates the foundational principles of excellence in healthcare, emphasising the equal importance of patient experience, clinical effectiveness, and patient safety within a well-functioning healthcare system. Unfortunately, patient experience reporting does not receive equitable respect, with a perception that the NHS appears “institutionally deaf to the patient voice” (Sibley, 2020). 

The National Quality Board's Shared Commitment to Quality (NHSE, 2021) underscores three key principles:

•  effective improvement requires both data/insight

•  strategic co-production

•  involving people with lived experience Further involvement guidance is outlined in "Working Together with People and Communities" (NHSE, 2022), highlighting providers' statutory and regulatory obligations.

People living in areas with high levels of deprivation, people identified locally at risk/with protected characteristics and those within the inclusion health group are most at risk of experiencing less good care (NHSE, CORE20PLUS5). NHS England is committed to reducing health inequalities (Long Term Plan, 2019) and, as part of this improving care for people who have the poorest experience (NQB).

The UK Standards for Public Involvement are a flexible guide that can be applied to many situations. They offer clear statements for organisations to assess their approaches for public involvement. NIHR INVOLVE, 2017 defines public involvement as work “being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them.” One of the NIHR’s own strategic goals states that, “the experience of patients, service users and carers is a fundamental and valued source of knowledge.” (Going the Extra Mile)

Despite these references, the NHS continues to struggle to involve people who use their services in a meaningful way. In our experience, for those patients who are involved, they are most often recruited to improvement initiatives after the project has been scoped. We could find examples where patients were informed or invited to complete surveys and questionnaires to give feedback but could not find examples where patients were approached from the outset. This does not mean that they do not exist, but perhaps that the practice is not widespread. Opportunities for genuine partnership and involvement of patient leaders are not usually widely publicised.

How we worked together

“I was frustrated that there were so few timely opportunities for people with lived experience to genuinely co-create improvements to healthcare services.” (Karen)

The Trio brought expertise: as a patient, a carer and an NHS Member of staff. We had a shared understanding that patients and carers not only have lived experience in their medical condition but also have valuable skills and knowledge from their careers to contribute to quality improvement projects.

We adopted a flat structure for our collaboration. Any of us could lead on the project at any time although we recognised that the staff member would be best placed for building initial relationships with other clinical group departments.

Through an iterative and collaborative process, our project aimed to improve patient care by increasing opportunities for patients to be involved in hospital quality improvement projects.

Our interventions included:

•  Diversifying and increasing the membership of our patient group with a focus on addressing current gaps by reaching out to underrepresented groups

•  Reviewing and updating our Patient and Public Engagement strategy and the patient group’s Terms of Reference.

•  Commissioning training for staff in the Foundations of Patient Experience delivered by the Point of Care Foundation

•  Designing and delivering a member induction training workshop for new patient leaders

There were several advantages to our partnership and our way of working. The project was additional to our daily work and caring commitments so had to fit around these priorities which dictated the pace of our project to some extent. We worked remotely due to our geographical locations, but this meant that we could contribute to the project at times convenient to each of us. We realised that the project was an ideal opportunity for us to model the change we would like to see and attributed the success of our working relationship to our regular communication, flexibility, and openness.

Our example of remote, collaborative working has demonstrated that location and personal circumstances should not prevent involvement in engagement opportunities.

How the Improvement Leader Fellowship helped us

“The Fellowship programme gave us a valuable framework in which to develop our collaboration and project. Without this framework, we may well have lost focus along the way when work and/or life commitments changed. Working as a team was essential to the success of our project and continued quality improvement goals.” Jude

The yearlong Improvement Leader Fellowship programme run by NIHR ARC NWL was the glue that held us together. Not only were we working together for the first time, but we were also all learning the techniques for conducting systematic quality improvement work. The Fellowship provided insight into evidence-based resources on involving people with lived experience in health research which we used for our project.

Alongside this, we learned from and were inspired by the work of the other Fellows and have benefited from a wider peer network.

We found it challenging to fit in the Fellowship days and progress our project, but the programme gave us the foundations and credibility to continue our work afterwards. We also developed some key skills including influencing and relationship building; quality improvement methodologies and sustainability beyond the duration of the course.

Navigating challenges and collaborating

Our project highlighted some of the challenges and opportunities of genuine patient involvement in healthcare improvement. Despite existing policy frameworks emphasising the importance of patient experience, we observed a gap in widespread, meaningful patient engagement.

Through a flat collaboration structure and remote working, we successfully implemented interventions to diversify patient representation and enhance involvement in quality improvement projects. The Improvement Leader Fellowship provided crucial support and resources, enabling us to navigate challenges and contribute to the wider peer network.

Our key takeaways emphasise the need for a comprehensive understanding of patient involvement, flexible approaches, and strategic communication for successful healthcare improvement initiatives. Ultimately, our experience and continued partnership highlight the transformative potential of involving patients as partners in shaping healthcare services.

Our project poster:

Our key takeaways

•  Use existing NIHR resources to guide and shape lived experience involvement in any project.

•  The value of patient involvement in any improvement project needs to be more widely and better understood, together with how to undertake it safely, effectively and in good time.

•  Improvement requires lived experience involvement of both patients and staff if it is to be truly effective.

•  Use patient demographic data to understand gaps in patient representation.

•  Provide training for staff and patients in evidence-based approaches for improvement (Experienced Based Co-Design and Always Events)

•  Set ground rules, code of conduct, guidelines to help you work together more effectively.

•  Analyse and act on the patient feedback.

•  Accept that your initial project objectives are likely to change and evolve as the project progresses.

•  Flexibility is essential; do not assume that there is only one way to approach tasks.

•  Recognise that project progress may not always be linear due to collaborations with stakeholders. Allow for this when scheduling deadlines.

•  A substantial investment in a communication strategy is crucial. Regularly share widely your workplan, why and how it is being done, the changes it has brought, and the impact of those changes on all stakeholders.

•  Thoroughly risk assess potential problems for all your planned interventions.

•  Consider how it is possible to encourage patient involvement beyond statutory duties which then creates more opportunities for better patient-centred care.

Find out more about patient and public involvement:

• NIHR ARC NWL patient public community engagement and involvement - https://www.arc-nwl.nihr.ac.uk/research/patient-public-community-engagement-and-involvement

• NIHR patients in research group – https://www.nihr.ac.uk/patients-carers-and-the-public/i-want-to-help-with-research/

• NHS England’s Top tips for getting involved – NHS England » Top tips for patients – getting involved

• Find out more about training for people interested in influencing healthcare improvement:

• NHS Peer Leader Development Programme for patients and carers - https://www.england.nhs.uk/personalisedcare/peer-leadership/

Get involved: 

Get involved in Sirona Care and Health – community health services in Bristol, North Somerset and South Gloucestershire https://sirona-cic.org.uk/get-involved/

Get involved with Kings Health Partners - https://www.kch.nhs.uk/about/corporate-information/patient-and-public-involvement/

https://www.guysandstthomas.nhs.uk/get-involved/patient-and-public-involvement

Get in contact: 

To learn more about our work contact: 

• karen.taylor171@nhs.net 

• l.stedman@rbht.nhs.uk 

• judithi@btinternet.com