The Rep Trap: The Catch 22 of being a patient representative

by David Gilbert

August 24, 2015

“It’s only 8 o’clock, but you’re already bored
You don’t know what it is, but there’s got to be more
You’d better find a way out, hey, kick down the door
It’s a rat trap and you’ve been caught”

Boomtown Rats, 1978


Patient representatives are asked to ‘bring the patient perspective’ to strategic conversations and committees. Without clarity of purpose or support, all around the table can make assumptions as to how the rep should do this. Ironically, the various tactics used can further marginalise the patient perspective and buffer change.

Trap 1

Surrounded by powerful professionals and seeking legitimacy, a rep can overly rely on their own experiences or stories. Some professionals might welcome this as a way of grounding high level conversations in reality (or say so for fear of offending) or be briefly infected with a rush of compassion.

But others may dismiss the ‘representativeness’ and thus legitimacy of such a view – contrary to the story-teller’s intention. Often the story might illustrate an irrelevant issue. I once talked about tea-making facilities on the psychiatric ward when we were discussing inequalities.

A committee is not a focus group. Judicious use of story-telling has its place, if accompanied by strategic insight that helps the group move towards joint solutions. But if used as an end in itself may accomplish little.

Trap 2

Sometimes, the rep works hard to ‘gather’ patient perspectives to bring back reliable ‘data’ about the patient experience. This may make them more credible with professionals accustomed to the arid zones of evidence-based decision-making. But it lets the group off the hook.

Patient and public engagement is a collective (often statutory) duty and the rep should not be used as a free, quasi-operational lead for engagement. Many reps find their goodwill taken advantage of, and have found themselves isolated and exhausted.

Trap 3

More ‘experienced’ reps can come to be seen as a one-stop shop, able to address all problems generated during an initiative. “What do patients think?” I was once asked. “What, all of them?” I thought. This can be flattering, but assumes one person (or two if the committee is generous) can be ‘the expert’.

This mirrors the medical mind-set that we may want to challenge – ‘doctor knows best’ flipped to ‘patient knows best’. Instead of a conduit capable of opening doors to others, reps can unwittingly close doors and the group can tick the engagement box and move on unruffled.

However, we can reframe the notion of ‘representative’ as ‘patient and public advisor’. After all, clinical advisors are commonplace, and bring subject expertise alongside strategic and (hopefully) leadership skills. A patient and public advisor does likewise if supported properly.

These new ‘outsiders-inside’ can also ask ‘so-what’ questions – ‘so what difference will this make to patients? So what will we all do to engage people’? The main aim is to work with professionals, as equal partners, to influence change.

The deeper question is about engagement structures. Maybe ‘representational structures’ are one reason why engagement isn’t working. By seeking round pegs (patient reps) for square holes (institutionally defined, narrow opportunities), we are placing form before function. It strips people of their passion and risks relegating engagement to a tick-box exercise. Let’s ask instead about the purpose of engagement and how people are supported to be effective.

It’s not about where reps come from – having one of those from that group, and one of those from the other. That’s important, but not as important as we think. And the struggle for representativeness often takes up so much energy that it precludes discussion on purpose.

This is not an argument for a new elite. We see people from all walks of life able to bring passion, belief, vision and ‘can-do’ attitude to forge joint solutions. But the opportunities have to be right. Harry Cayton, CE of the Professional Standards Authority says – “If you worried about the usual suspects, you wait till you see the unusual ones”.

Thus far, the NHS has not been interested in transforming engagement, content with representational mechanisms that can buffer change. Now times are hard and difficult discussions and decisions are needed (about safety, integration, change, resources). We need people who can model partnership over polarisation, insight over data generation, new ideas over re-hashing old problems.

Addressing the rep trap is one key to escaping a bigger trap – engagement that does not engage, and lacks impact. Is the NHS ready?

This blog was first published by the Point of Care Foundation

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4 comments on “The Rep Trap: The Catch 22 of being a patient representative”

  1. Hi David
    Thanks so much for this blog. I've been thinking about this for a while. Meaningful engagement has huge transformational potential. I'm keen to explore policy an practice that can help bring this about.
    Please keep sharing your Learning and insights as you go along

  2. Interesting blog David. As the engagement lead at NHS Leeds West CCG I've encountered all of the the above. In 2014 we launched a new way to involved local people in the commissioning process. I think our patient leader programme is starting to overcome some of these challenges. We ask patient leaders to be objective and consider the needs of the wider community when they sit on strategic groups. We provide them with training, peer support and encourage them to ask commissioners for robust evidence that service changes meet the needs and preferences of our local communities. It's far from perfect but patients seem to like it. You can read more about it here: Thanks again for keeping this debate going - It's important.

  3. Being a patient rep has given me an insight to service provision and a relationship with healthcare professionals that I value. I have 2 concerns. One is that I become part of the tick box, (Have you consulted re this change in services?) And the small pool of patients reps, mainly older middle class volunteers. (At 71 I'm one to the youths).I do have a lot of experiences re the health system and I try not to be a one issue person and think of wider issues. There are a lot of traps out there but we keep trying to improve life experiences of dealing with moving health forwards. The best bit is that we have some fantastic young professionals who listen and engagement people who support us.

  4. David makes some relevant points and shows why we need to be ever watchful of making these mistakes. I am sure that some leaders of "strategic conversations and committees* would like to consider that having a patient "representative" (PR) on their team satisfies the need for patient engagement. It is clear to me that one of the roles of a PR is to remind the team, ad nauseam, that "proper" patient engagement must take place. The PR cannot, in fact, be a "representative" of patients in the true sense of the term, as they, obviously, can only have a perspective that is narrower than that of patients generally.
    And talking of narrow perspectives, David states that "Thus far, the NHS has not been interested in transforming engagement..."; that may be true in his (admittedly, wide) experience, but, in my (albeit much more limited experience), the opposite is true.

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