Jenny McAteer on ‘where the power of the peer meets the power of patient experience’: #HealthNow literature review

‘We need to invest in listening. We need to invest in the power of the peer to gather stories’

First published December 2020, written by Jenny McAteer, #HealthNow Director, Groundswell.

Those of you who know me, know that I just can’t stop banging on about listening to people, learning from what they have experienced and crucially acting on it.

Actually, what you might not know is that I’ve been banging on about this for more than two decades (yes, I am that old).  Over these years I have carried this soap box with me when being a volunteer advocate in a secure assessment unit, a support worker in shared hostels, to being a Healthwatch Director – always with the same message.  Now I have the privilege to support Groundswell and #HealthNow Peer Researchers and Advocates try to amplify the experience of people who are homeless when trying get access to health care.

I know that report after report gets produced, patients speak up and sometimes they get heard and change happens. Sadly, sometimes the reports go on a shelf and get forgotten about, or people don’t get heard and nothing shifts.

Well, the Groundswell led #HealthNow partnership with Crisis and Shelter aims to make sure that experience and speaking up really leads to change by removing barriers to accessing health services.  That’s why we teamed up with the Patient Experience Library to pull together those reports and insights from around the country that relate to patient experience when someone is homeless.

What we found was there is a lot but also a little.  The Healthwatch network, Groundswell and some other great organisations have collated views on many different services and health issues, producing great reports.  We pulled these together and looked at what the trends across them told us about what needs to change.   But sadly, in some service areas there is little evidence to indicate what change is needed.  For example, the patient experience of people who are homeless receiving inpatient and outpatient care delivered by acute trusts is not explored in depth. Read the full literature review here. 

So, what does the literature tell us about where change is needed?

A great deal of attention has been given to understanding the barriers to accessing Primary Care through GP practices and dentistry.  People have shared their experience of challenges with registration, difficulty in setting appointments and feelings of stigma when receiving care.  All these challenges are well documented and really point us to the need to develop concrete action to tackle this.

Likewise, it is clear that people who are experiencing homelessness have often faced unsafe discharge from hospital settings meaning that the continuity of care is not possible, therefore exacerbating their health issues.  Despite efforts to avoid this through local homeless discharge protocols the evidence suggests that further action is needed.

There is some evidence of the challenges faced when accessing mental health services including where people have dual diagnosis with substance misuse issues.  However, there isn’t enough work in this area to fully understand what the specific barriers are to understand how best to address them.

Finally, there is a real and urgent need to address the barriers for people who are experiencing homelessness in receiving communications about their care and treatment in the right way, to prevent them from missing appointments or falling out of care pathways.  Services aren’t yet able to adapt their systems to account for people who have no fixed address or whose access to technology is limited.  These challenges have only been exacerbated by the rapid pace of digital service developments in response to COVID-19, risking deepening the health inequality

But there are some places where there is not enough documented about the service experience of people who are homeless, but anecdotally the sector knows that people face challenges in these areas. There are some groups whose voices aren’t yet heard.  Why might this be?  Well people who are experiencing homelessness face barriers to engaging in consultations or patient experience groups, they are less likely to talk to PALS (the Patient Advice and Liaison Service) or make a formal complaint.  As a result, we need to invest in listening. We need to invest in the power of the peer to gather stories and that is what Groundswell and the #HealthNow network of peers intend to do.  Let’s get these stories heard!  We look forward to sharing these stories with a great network of partners and people who are ready to listen to us.

Sign up to the #HealthNow e-newsletter to follow the progress of the campaign. 

Read the #HealthNow literature review.