Article by Rory Hegarty, Director of Communications and Engagement, NHS North West London/ North West London ICS

“You come and talk to us when you want to shut something. You come and talk to us when you want us to get vaccinated. When do we get to say what we want?”

When a local resident said this to me in the midst of the pandemic, I realised just how far the NHS approach to public involvement still had to go. While there have been numerous innovative and admirable approaches to co-design and reaching deeper into our communities, the experience of talking to residents about Covid-19 reflected back a fairly harsh light.

The key point seemed to be that the NHS always sets – and limits – the agenda.  ‘We want to talk to you about moving service x to venue y’, ‘we need to understand why you are hesitant about vaccination’ – ­but never ‘what matters to you?’ or ‘what would you like to see change?’

Residents who’d attended NHS events complained that when they raised their concerns – maybe about GP access, waiting times or how they were communicated with – they were too often told “that’s not on the agenda today”. They felt like second class participants – asked to take part in a discussion without having any say in its parameters.

This insight crystallised in a couple of sentences everything we were working towards. In North West London, we spent the two years before the formation of integrated care systems working with a group of around 150 residents to answer the question: what would good public involvement look like? In the very first meeting, a resident suggested we develop an involvement charter, which was then iterated in to five simple commitments over a series of discussions with the group, before being widely shared for any further comment.

The charter now underpins an ambitious involvement strategy which aims to embed what we hear from local people at the heart of our decision making. This strategy came out of the discussions with local people and was further iterated in discussions with residents and stakeholders across our eight London boroughs. Our integrated care board has agreed an approach which will treat insights from residents as qualitative data, to be considered in decision making and planning alongside other evidence, for example, public health or performance data. Data might tell you there are challenges with a service: insights from the people using it might tell you why.

Our approach has six key elements:

• An outreach approach in each borough, reaching into our communities and asking ‘what matters to you?’ – with a particular focus on groups we do not always hear from
• Publication of monthly insight reports reflecting everything we hear from our communities – and ensuring each item of feedback goes to the appropriate decision makers
• Quarterly ‘collaborative space’ meetings in each borough, open to all and with a co-designed agenda – plus specific North West London wide forums on specific topics
• Lay partners who provide a public voice in our programmes and key meetings and support co-design with local communities
• A standing Citizens’ Panel of 3,800 residents reflecting our local demography; this is used for quantitative surveys and where needed, focus groups
• A Design Advisory Body to oversee the whole approach and ensure co-production with communities is central – this group is comprised of representatives of communities we have sometimes been poor at reaching in the past.

What feels different, as someone who has worked in this field for many years, is, the openness of the conversations, the extent of the outreach and the fact that every insight is recorded publicly so that it can be considered by decision-makers. Our strategy is very much in its infancy, but our hope is it will put local people and their insights at the very heart of all we do.

About the author

Rory Hegarty is Director of Communications and Engagement for the North West London Integrated Care System (ICS). He has over 30 years’ communications experience, including 19 years at a senior level in the NHS. Over the last ten years, Rory has led service change programmes in three London regions, working closely with residents, communities and partner organisations to develop best practice approaches to public involvement and participation. Rory has previously led communications for Imperial College Healthcare Trust, West London NHS Trust, Healthcare for London and Carers UK.