“Their input helped to shape the final guidance to ensure it was focused around the people most directly affected by the recommendations.”
Last year (2021) NICE (the National Institute for Health and Care Excellence) were creating a new guideline: ‘Integrated health and social care for people experiencing homelessness’. The aim was to improve access to and engagement with health and social care for people experiencing homelessness, ensuring care is coordinated across services.
Listening to people with lived experience
As part of the development, the committee at NICE were keen to consult with people who had lived experience of homelessness to obtain a range of views, experiences, and expertise, independent from the committee. This is where Groundswell stepped in.
Our #HealthNow Peer Network is a group of volunteers and staff from Groundswell and our partners across the country – all members have experience of homelessness. We held a focus group, where 14 members of our Peer Network answered a set of questions to test the relevance, feasibility, and acceptability of the draft guideline and selected recommendations.
“It is incredibly positive that NICE is producing guidance relating to people experiencing homelessness, this feels like an acknowledgement of the inequalities people have faced when accessing health and social care and a commitment to reducing them. The importance of the role of the peer in designing and delivering solutions to tackle health inequalities is central the the #HealthNow campaign and we are pleased to see this approach championed in the guideline.” – Rachel Brennan, National Partnerships Lead, Groundswell.
What did we think?
The key feedback focussed on language and terminology and service delivery. Our peers explained that terms such as ‘complex needs’ puts the blame on the person and can lead to poor treatment based on stereotypes; therefore, NICE instead used the term ‘severe and multiple disadvantage’ to recognise people’s ranging challenges. From a practical perspective; our peers were keen to see guidance include appointment reminders and follow up with people when appointments ae missed, this has been included in the guidelines.
“The #HealthNow peer network provided a platform for us to engage directly with people with experience of homelessness. Their input helped to shape the final guidance to ensure it was focused around the people most directly affected by the recommendations.” – Mark Rasburn (him/he), Senior Public Involvement Adviser, Public Involvement Programme, NICE.
The ‘Integrated health and social care for people experiencing homelessness’ guideline was published in March 2022, you can find it here. NICE presented this poster to the ‘Guideline International Network’ conference in Toronto last month (September 2022) to demonstrate the benefits of involving people with lived experience when creating guidelines.