My learning from working with people with lived experience: it’s more than just parking and waiting lists

Emma JamesMusculoskeletal (MSK) Project Manager
06 Jun 2023
NHS South East London

My name is Emma James, and I am the Musculoskeletal (MSK) Project Manager in the Planned Care Team for South East London Integrated Care Board (SEL ICB). Since November 2021, I have been working on the SEL MSK Programme, which aims to review current MSK care and reduce people experiencing different levels of care across SEL.

My experience in MSK, including working as a physiotherapist and an operational manager for an NHS provider, has taught me the importance of incorporating lived experience into healthcare.

In many cases complaints are an opportunity to make quality improvement changes. As through feedback from service users, changes can result in better care for patients and the team.

Which is why, I wanted to ensure that we incorporated lived experience voices from the start of the SEL MSK programme, not as a tick-box exercise, but as an integral part of the work.

Involving local people

To begin our engagement with people with lived experience we hosted two webinars, which had 36 attendees and 102 interactions. We also launched the community MSK lived experience group, which has over 20 members, meeting online every two months.

The group is lively and always leaves me energised. They have helped to co-design a patient survey and were valuable in providing feedback for self-referral to MSK physiotherapy.

Read more about the outcomes of this work

Musculoskeletal Road Show

Acknowledging that not everyone will have digital access, and wanting to reach a wider audience, we then had an MSK roadshow, building on the themes that emerged through the webinars.

As part of the roadshow we visited five different MSK service waiting rooms, promoting a survey, and speaking to people about their experiences receiving care for their MSK , what works well and what could be improved.

The roadshow allowed a broader range of people to be involved in the MSK Programme, people that are currently receiving care and were unaware of the webinar we hosted.

We found that on the whole people were happy with their care and felt listened to, however many people felt confused about their referral pathway and that they had inconsistent messages.

As the project manager in this programme, it was a great opportunity for me to speak to patients and staff in MSK waiting rooms to really understand the local challenges and opportunities.

In the future, I think it’s important to host activities face-to-face but through a more organised forum, such as attending various community groups. In many cases, people are unable to stop and speak when they are there for an appointment.

Involving people with lived experience in the decision making programme board

Another step on our journey was to recruit lived experience board members for our MSK Programme. We promoted this through our lived experience group and via the different ICB engagement teams. More than 10 people applied, who we then meet with individually to understand their background and why they wanted this role.

When our lived experience board members first attended the board meeting, upon reflection there was more opportunity to involve our new board members during the meeting. So, I met with them to discuss the agenda and to hear their reflections.

By encouraging them to raise their opinions during the meeting, at the latest board I felt the engagement was much better, and their opinions added value to discussions and decisions.

My learnings

Having not been involved in incorporating lived experience into programs of work, I think it’s important to realise that it’s evolving with opportunities to learn as we go on. The SEL ICB engagement team has been incredibly supportive, and their expertise has enabled the success of our lived experience engagement.

Throughout this process, I have worked closely with a consultant physiotherapist, Kathy Payne, from Guy’s and St Thomas’ NHS Foundation Trust. Kathy is dedicated and passionate about working with people with lived experience and has been invaluable in leading the community group sessions. Listen to what Kathy said about our journey of working with people with lived experience.

It’s easy to believe that we know what’s best for patients, but working with people with lived experience helps us recognise our blind spots and enables us to transform more sustainable services.

Without listening to those with lived experience, we’ll never truly understand how to make the transformative changes our service users need. I have found that there are barriers to doing this, such as the fear of what people were going to say and not wanting to change our future plans.

However, working with people with lived experience from the start of the transformation journey can make all the difference.