Reflecting on how NHS could gain more from public involvement

In this article for CHEX, retired citizen Ro Pengelly reflects on her public involvement with NHS, as a business representative on a UK taskforce in 1992, and since 2018 with two of Scotland’s non-territorial NHS boards.

My public involvement with NHS restarted constructively with a sense of frustration and an urge to get involved to make things better – sparked by an incident where some friends had to come and collect me from a delayed hospital discharge and drive me 40 miles home.
 
It restarted to encourage the NHS in its statutory duty for public involvement, and was fuelled by my knowledge of patients’ and unpaid carers’ fruitless e-mails with NHS and other health and care agencies, and my own experience of unrewarding attendance at patient participation groups and open meetings involving Integrated Joint Boards.
 
Encouragement and support for NHS volunteering is timely, with numbers of volunteers rising, though still lower than before the pandemic.  And some encouragement could help  existing volunteers to reassure their peers on the upsides of sharing views with NHS and the Integrated Joint Boards.
  
Some people find value in simply telling their story, by volunteering their lived experiences, or public perspectives as public partners. However, in my experience, most volunteers also wish their contributions to have demonstrably positive impact, and I believe that any public-facing organisation can learn valuable lessons from hearing about the practical realities, trends, ideas and problems within the services they operate.
 
Such an impact can be gained by asking volunteers to: give public reassurance of an official audit, inspection, review or procurement process; help to refresh and focus resources produced by NHS for its own staff, suppliers and service users; or to attend round-table in-person meetings where people come together from different groups to share their experiences.  
  
Supporting volunteers properly is the best way to retain their value and encourage further and wider participation.  An example of such support could be the forming of a Public Involvement Advisory Group with an assigned secretariat with a clearly-defined and part-time commitment and availability. This can ensure that volunteers feel adequately involved and briefed, allowing their contributions to be better expressed and acted upon. 
 
Importantly, such groups recognise that volunteers’ motivations and availability may fluctuate due to other commitments or capacity to learn, and so a flexible model is key to allowing people to give time and energy when they can, and step back when life changes. 
  
However, in my view, the success of such public involvement may still depend on NHS and IJB staff having the capacity to make time for, and genuinely recognise the value of, hearing public perspectives and lived experiences.  

If you're looking for more reading on topics like this, our resource hub has more blogs, as well as case studies of community-led health in practice on the ground.