I went to my local “patient participation” group meeting last week. My local practice said they were seeking feedback on their commissioning plans and suggested I attend. This was quite gracious (and brave) of them given how rude I was about their attempts to create a patient leaflet.

I think all non-practising clinicians and health managers should be in patient participation groups. Healthcare is a complex beast, often impenetrable even to those within it. Asking patients for their views is obviously the right thing to do, but without helping them to understand healthcare—clinically and as a business—it seems almost cruel.

My immediate reaction to the meeting was my usual one in any kind of community event in central London—the people in the room did not remotely represent the local population. Most of the patients were north of 50, perhaps 60, and nearly all were white and of British origin. None of the organisers seemed too worried about this, even when they (proudly) presented data showing how diverse the local community was.

I’m guessing somewhere in the requirements for authorisation of clinical commissioning groups (CCGs), the new bodies that will procure services for a local community, is a tick box for patient engagement. I’d hate to think my local CCG has been able to tick that box on the basis of this meeting, but I have a horrible feeling they will. This seems like nothing short of an injustice for local communities.

One of the key questions we were asked was what do we want to see in our “care plans.” One of the patients asked what this was and was told by a health manager it was a plan for anyone with a long-term condition. One of the hosting GP’s balked at this description and clarified that it wasn’t for everyone with a long-term condition but for those with complex conditions. I have to admit that I found this clarification confusing and when I looked around the room I saw the kind of head nodding people do when they clearly don’t know what is being said but are not sure how to ask the next question.

Strangely, the patients then set about listing what they wanted to see in a care plan. When they were asked to read out some of their answers one of the patients said it depended on what the condition was. Although she said it as a statement, there was a questioning inflection at the end of her sentence. I was hoping the inflection would draw a response from the organisers, but it didn’t. After a momentary awkward silence, the hosts nodded with strained smiles and the patients duly responded a split second later with the same; it reminded me once again that no one really knows what anyone else is saying.

At one point a GP used the term “primary care,” and, in a moment of brave civic expression, one patient jumped in to ask how discharging a patient in the middle of the night was in any way “primary.” The GP and patient were clearly using different definitions of the word “primary” but this wasn’t acknowledged. The GP did acknowledge that they needed to speak with the hospital about discharging patients over night but left the misunderstanding uncorrected, which seemed like a missed opportunity.

As my despair grew, comic relief was provided by a bizarre few minutes in which three or four patients decried how awful the local physiotherapy services were. The principal complaint seemed to be that patients “wait for weeks and then get a piece of paper” telling them what to do (presumably a diagram from the ubiquitous Physio Tools). I wasted no time sending a text to goad my friend who used to run part of the local service. Worryingly, she agreed.

I think the most penetrating question of the night was from someone who wanted to see the finances of the local CCG. This made all the sense in the world to me and reminded me that there are people out there that want to understand—in detail—where their money is going. The answer he got was rubbish—a polite fob off, at best. I can only hope that he asks the same question and each and every meeting, and that sooner rather than later the CCG get the message—it’s not your money it’s ours, we want to see where it’s going.

It’s clear to me that if patient participation is going to mean something we first need to ensure the patients in the room represent the local community. Once that’s achieved—and it’s not an easy thing to achieve—the representatives need background information—if not outright education—on what healthcare is. Without that, how will they know what to question, where to probe, and how to influence services for the benefit of the people they represent?

Clever people call this health literacy. I think it’s just a matter of respect.

Competing interests: I am interested in joining my local Health Watch, although whether this post helps or hinders me I am not sure. I tweeted some thoughts during the event and as a result was asked by the Health Service Journal for my views but I declined to comment, preferring to write this post and also share it with my local CCG first.

Pritpal S Tamber is the director of Optimising Clinical Knowledge Ltd, a consultancy that helps organisations improve how they use established clinical knowledge. He was previously the medical director of Map of Medicine Ltd, a company that creates clinical pathways to help health communities design services. He was the editorial director for medicine for BioMed Central Ltd and he was also the managing director of Medicine Reports Ltd. He has twice been an editor at the BMJ, the first time as the student editor of the Student BMJ.