Q&A from Southampton University Seminar

This week, aided by some very simple technology, I contributed to a seminar at Southampton University with Trevor Kettle about the full scope and continuum of patient involvement.

It was a privilege to talk to the students with a very interactive Q&A session. The questions were really challenging - a good sign! So here are my answers to some of the questions asked...


How can you manage patients with their own personal agendas?
I think this is a very normal fear to have around PPI - someone with their own agenda who might rant and rave based on their own experience. I don't know anyone involved as a patient in any capacity from local PPGs to national patient leaders who hasn't got a personal motive to get involved - health is personal and emotive - its about harnessing that experience and emotions in a helpful way. For me, I've been able to really benefit from training and patient leadership coaching from CPL (@markjdoughty) and ongoing support from a small but excellent support network that help me raise concerns and issues in the most constructive way.
Recent experience working with a great team of patients and carers in Dorset has highlighted to me the importance of setting the aims and functions of PPI roles. It can be confusing to know whether we're talking about people's individual experiences or the more collective feedback that we might be looking for. Being clear about the roles and groups function helps avoid people assuming it is a forum for individual experiences and gripes to be aired. A role description and clear description of the function of the group can help manage people's expectations of their involvement.
But importantly, remember that patients are people, and healthcare is an emotive subject!

Advantages of me being med student? 

I've been very aware the advantages being an ex-medical student and my demographic status have had on my ability to be involved in my care at an individual level - in terms of my own self-management and access of healthcare resources. But I haven't really considered the impact it has had on my role as a patient leader, but it has undeniably had an impact. I assume that being white, female, middle-class and degree education, makes me an 'acceptable' face of illness, and that background has enabled me to feel confident articulating my perspective and interacting with professionals. 

So there are lots of advantages, which in turn make a good list of what we need to do to make involvement at ALL levels accessible: support both financial and in unlocking the transferable skills people have from other experiences, and meeting people where they are and accepting contributions in different formats. EVERYONE has valid experiences and the potential to apply those. 

What three things would I say to the CEO of an NHS organisation? 

1. Have a close partnership and mentor or shadowing experience from a patient leader to see how you can work with them, and start to see the impact and value that they can bring. This is an opportunity for senior management to lead by example

2. Invest in patient involvement - with the time of staff to do it properly and the funding to make it as equal and effective as possible 

3. Start to learn and champion small scale examples of effective patient involvement in your organisation so it becomes a positive and acknowledged part of the culture. 

Who are the best people to do PPI - if we are talking about 'expert patients', who is the best expert to be working with?

For me, this touches on the long running argument about 'representation'. I'll refer to David Gilbert's blog, since he articulates it far better than I can. 

There is no 'best', because everyone's experience is valid. It comes back to the skills. 

If I wanted to work with patients on a project or group, I'd want to have a combination of experiences that are relevant to issue at hand and the skills so that the conversations are both helpful and reflect the range of perspectives that patients have - remember patients aren't an homogenous group that all think the same! 

One important quality here is the ability to take one's personal experience as a patient and reliably extrapolate that with their own personal support networks to be more than a sole voice. 

To hear about all of this in action, I can recommend following on Twitter: 

Alison Cameron @ally375

Karen Maskell @gleefulKaz

Michael Seres @mjseres

Mark Doughty @markjdoughty 

David Gilbert @DavidGilbert43