The Latin phrase ‘nihil de nobis, sine nobis’ translates to ‘nothing about us without us.’ It is a phrase that has existed as far back as the 1500s and was used was to communicate the idea that no policy should be decided by any representative without the full and direct participation of the members of the groups of people affected by that policy. In recent decades there have been growing calls for the involvement of patients, carers, and family members in health and social care services – but today patient engagement and involvement is still too often treated like an innovative concept and seen as a ‘nice-to-do’, rather than standard practice.
On February 9th, Picker and the Patient Experience Network chaired a webinar that explored the theme of collaboration in care. It showcased three sets of NHS providers that involved patients, staff, and experts to develop new and existing services, and each described the considerable positive impact this had on patient care.
Clare Delap, Engagement Lead for NHS Kent and Medway NHS Foundation Trust, presented their co-production and co-engagement work regarding long covid, a sometimes life-changing condition that emerged in 2020. Because very little was known about it, people who were suffering felt ignored, and so Kent & Medway worked with their Healthwatch and other community organisations, and ran focus groups, surveys, events, and workshops that informed the first postcode assessment service. Then, after setting up a patient reference group, they worked together to codesign a new rehabilitation and support service.
When doing the work, Clare shares that it did not feel innovative, saying, “People with lived experience became part of a Kent and Medway wide cross-organisational delivery group, improving what we were doing. We thought nothing was particularly special about it, just what all commissioning or decision-making in an integrated care system like ours should be like. They should all be led by people with experience and with lived experience.”
This thought was echoed by Fiona Jenkins and Jenny Scott, the commissioning team inside Cheshire and Wirral Partnership NHS Foundation Trust. As a mental health provider, they lead on two provider collaboratives, Level Up and Empower ED, which focus on tackling the increased referrals into young people’s mental health services in the region and providing the best support packages for young persons and families. They do this by, as a standard, putting the patient experience at the core.
“A person centred approach isn’t a soft option but fundamentally important. It ensures we work across complex landscapes with many different providers, commissioners, and new organisations. And so, in everything we do, we always try to place the person, and their families, at the centre to learn from them and their experience.”
They continue, “we don’t just seek to engage with people who have lived experience now and then or when we’ve got a bit of a big piece of work. It is hardwired into our governance-specific groups and through membership on all our key groups. It is a cultural focus to involve people with lived experience and it is key to broader community engagement.” Involving patients and service users should be business as usual, but it is evident that a cultural shift is required to ingrain this into everyday thinking and activities.
Yvonne Mahambrey and Alison Germain Martin from Liverpool University Hospitals NHS Foundation Trust and St Helens & Knowsley Teaching Hospitals NHS Trust also expressed a desire for cultural change. Their trusts worked together to create a ‘regional carer passport’, an information and support document for carers that is consistent across Trusts in the Cheshire and Merseyside regional network.
They said, “The two main aims were to demonstrate our commitment to working together with carers because they are the expert partners and to include them in creating the information and support document. Co-producing the passport was essential, and it was fundamental in getting all the trusts on board to ensure the passport was standardised and for our region. We worked with staff, we worked with patients, and we worked with carers to really understand what that document needed to look like, but it was much, much more than a document. We wanted it to be a cultural change”
A common step the trusts took to bring their PENNA shortlisted projects to life was to engage directly with the people who would be using and benefitting from the services. Involving people and service users enabled the trusts to build an understanding of what local people wanted and needed, and to take a person centred approach to addressing this. Their work shows the fundamental importance of listening to and engaging with people and communities.
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