Being Weird: The Plight of Patient Leaders

A few seasoned patient and public involvement practitioners were discussing the challenges to getting patients engaged in healthcare … yet again.

There we were for the thousandth time debating the semantics of the word ‘patient’, how to engage ‘hard to reach groups’ (another phrase I truly despise) and debunking the notion of ‘representation’ to a professionally recalcitrant audience: “All of us here are weird” said one of our tribe.

We all laughed knowingly. The implication was that few people truly wanted to do this sort of work. There was something odd about us round the table.

Weird? Yes, we are

Of course we are weird. Why would anyone schlep (a word I truly love) to a boring sub-committee on quality and wade through a 100 page report filled with jargon designed to dull the most active brain? Or succumb to a stale sandwich at a focus group in return for pouring out their heart about their ‘experiences’ of care?

Most patients surely, would prefer to forget about their healthcare experiences and curl up in front of the TV on a wet Tuesday night.

Why would anyone waste days (and nights), weeks, months, years (decades in my case), continuing to bang head against wall of professional resistance to change? Why risk making ourselves ill again through frustration at not being listened to? Experiences that only echo the marginalisation of our patient years.

Weirder still. Why would anyone attempt a quasi career in this arcane business – the smoke and mirrors game of patient and public involvement, reduced to a ridiculous acronym PPI (recognised by most in the UK only as an insurance scam)?

Become a PPI practitioner or ‘patient experience lead’? Ha! A career with limited onward possibilities, reporting upwards through a ceaseless chain of command that serves to neutralise our most cherished values – watching the system crush the richness of what people tell us, turn stories to stats, passion to paralysis, what matters most to a tick box.

And those ‘representatives’, ‘lay members’, campaigners, activists: Unpaid, undervalued, ignored, patronised, marginalised. And when triggered to anger by the system’s refusal to budge, watching the faces of those in power as we lose our rag – ‘told you so’ they whisper – these ‘usual suspects’ with their ‘axes to grind’, their ‘personal agendas’. These children who cannot rise to our revered strategic level, or learn to use our code words, ‘concern’ for fury, ‘inappropriate’ for utter nonsense… How dare they be so bald, bold and downright bad.

All the while, the system refusing to invest in training, hopeless at clarifying our roles and doing nothing more with our ‘voices’ than to cry about compassion and tell us they are ‘putting us at the centre’ only to surround us like a wagon train with patronising guff.

(yes, yes, I know there are honorable exceptions, excellent experience based co-design initiatives, etc etc. I am talking about how it feels often and on the whole).

And when we do learn their trade, wear the suits and ties (or gender equivalent), we are accused of ‘going native’ – Catch 22 (see also The Rep Trap:

It’s not surprising we are weird

Yes, we are weird – those who have borne all this, yet still bring our different perspectives to the table until we grow weary, retreat and come again; who have the tenacity, the resilience, the vision, the values, the sheer endurance to last – still here, still arguing that, yes: patients have the right to be equal partners at the table.

And still the system ignores us. At national level, policy decisions are made for us without us; Vanguards trundle on inexorably with professional leaders at their head recruting old mates on the sly from other waning quangos; the old guard set up a few tame ‘patient forums’ at the edge to handle uncomfortable views; Early morning debates at posh think tanks serve up croissants to the giddy elites; Central agencies spend millions on grandiose schemes, yet marginalise true patient leadership.

Meanwhile, those feckless patients turn up in their droves at A&E (or not at all in GP-land), demand wasteful medicines and continue to get fat recklessly. Any sensible business would find out why and work out the solutions with patients. Nope – blame and shame those patient-children (put the price of the medicines ‘they’ waste on their prescription, tell them loudly to feck off from A&E and ‘choose wisely’ or ‘take more responsibility’ as if they don’t every damned day of their LTC lives).

Of course we can always join in at ‘the edge’ or sign up to a webinar. But heaven forbid if you get too edgy – because then you are a ‘rebel’ not a ‘change agent’. Rock the boat, but please do it gently, and do let the professionals continue to steer the boat while articulating a ‘model for change’. Stay shiny and positive. Being on the receiving end of this sort of stuff can dull us to a weary weirdness…

And then the inquiry panels (patients not included as members), such as the recent Naylor commission will suck the brains of unpaid, overly grateful patient advocates, for ‘radical’ ideas and either co-opt ideas (and call it ‘patient-centred leadership’ or somesuch) or merely ignore us.

Instead there will be an award for ‘top’ patient leaders that creates the illusion of change. And event organisers around the country will continue to tag on a patient speaker at 4pm to offer the token ‘patient voice’, when most of the audience have gone shopping at John Lewis.

And still the tosh about ‘patients being at the centre’ echoes from The Club. Little changes. Or so it often seems.

Yes, we are weird to continue to bang the drum. We should have given up ages ago.

Weird? No, we are not

Hang on. Is it so weird to care? Is it so weird to want to harness one’s passion to lead a fulfilling life that rests on trying to make things better? To utilise one’s own experiences to help others? Is it so weird to think that, together, we could do better in healthcare?

When we have been injured, been ill or been disabled, how should we ignore that life shifting experience? How can we turn our backs on our vulnerable selves and not try to infuse our lives with retrieving meaning from the years spent in that black hole.

If you knew what it was like to think you were going to die every day in a psychiatric unit. If you went through years of pain and anguish and saw every day the indifference of staff, or treasured those small moments of kindness to glimpse a different way for healthcare – surely you’d want to give back? No, it would be a duty and a privilege.

All of us want to lead a decent and meaningful life, and most of us are happiest when we have a role that contributes to the greater good. Is it so weird to want to help professionals – most of whom give of their best – and think that, by working together we can improve the current healthcare system that is in crisis.

Is it weird to be scandalised by the worst that can happen in health and campaign for change? After Thalidomide, Bristol, Alder Hey, Mid Staffs… is it so weird for folks like us to think there might be better ways of doing things – that professionals might want to work with us, that we could work together?

Is it weird to imagine that if we could only find a chink in the armour of the healthcare system, that we could infect the body-professional with a dose of true partnership. Is it so weird to want to come together with like minded people who share their vulnerability and their integrity. It is precious to belong again.

People like us should be treasured and welcomed into the fold for the insights we could bring. But the system has made us weird

Patient and public engagement is not fit for purpose – through channeling our passion via countless dead end focus groups, questionnaires and child-adult feedback mechanisms; through neutralising our energy through tedious institutional representational mechanisms, we have grown into weird beings (see also The Engagement Industry

We have been hothoused and become exotic creatures – multi-coloured, oddly-shaped, thorny.

We are not wired to be weird. The system has made us so.

What if…

A few days ago, a few of us ‘weirdos’ met for the first time. A gaggle of passionate and exhausted ‘patient leaders’ – a rainbow of incredible people who are advocates of patients and professionals working together as partners for change; all of whom have been relentless in their diverse and constructive efforts to shift the system towards being truly patient-centred.

We talked of developing a network, how to help each other restore our energy, develop a network that was truly inclusive, support others to ‘come through’. Those of us who are ‘weird’ have a duty to make it easier for others to do what we do – to ensure that they are the norm, not weird.

In a few years time it will be expected that healthcare organisations provide opportunities beyond focus groups and sub-committees – to support the talents of patients and carers who want to use their own experience to help improve and change healthcare.

We discussed where to begin.

In Sussex MSK Partnership (Central), I want to develop a People Bank – a pool of passionate people who have experienced what it is like to go through our services, or who live with musculoskeletal conditions. I want us to recruit, support, train and pay people to get ‘involved’. But not in the old weird ways.

I want us to open up a ton of opportunities. People might want to be in the community, helping to set up activity and exercise clubs. They might have bright ideas to stop older people falling over in their homes and maybe we could fund them. They might want help others as neighbours, befrienders or as advocates when people come to use our services.

Some may want to develop apps or design assisted living equipment. They could help on service improvement projects, moving beyond telling stories and working with staff to develop new ways to meet unmet need, or just to get the waiting rooms right in clinics. They could train professionals in communication skills, or help us interview and recruit staff. Some may do research, others may write blogs or books, or start YouTube channels.

Those who want to think strategically – patients are people after all, and have diverse talents (illness has not made them any weirder than others). Patients can help the service around whether we fund ‘low value’ treatments and in developing strategic priorities.

(I even hold the vision that this movement will spread… that patients will lead their own healthcare inquiries and summon the great and the good to their table for a change; that we will set up our own magazines and learned journals; that we will lead our own commissioner and provider organisations; that patients will be part of delivering services within clinical teams as happens sometimes in mental health… but steady on Gilbert. That may be too weird for some for the moment)

And, back in Sussex, yes: we may still have one or two boring committees and it would be nice to have some people there who could bring the conversations back down to earth by asking ‘so what the hell are you talking about… how will that help patients?’.

I should not have laughed at my friend at the meeting. I should not have unwittingly colluded in disparaging the emerging cadre of quiet revolutionaries (Thanks to Alison Cameron for that phrase). I was guilty of the crude labelling of patients that I hate.

No. It is the old system of engagement and those who defend traditional modes of working that are truly weird.


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6 thoughts on “Being Weird: The Plight of Patient Leaders

  1. I found this very interesting and challenging inspirational. Will you keep me in touch with progress? Also check out We are trying to improve health outcomes and keep going discussions around self care and personal responsibility


  2. Perhaps if there was a robust system in place that could reimburse out of pocket travel expenses/sundries in a timely manner (on the day of outlay at the very least, as many people who wish to get involved are on low income and cannot afford to wait 6 weeks to get their expenses returned by cheque usually !) then, and only then would there be assurances that anyone wishing to get ‘involved’ in Research wouldn’t have that fundamental barrier to face ?

    Everyone points to the Involve ‘guidelines’ about travel expenses and the like, but what’s needed is a proper National Policy …. only then will there be any proper level of interest from new people wishing to be involved.

    As for the “It’s OK to ask” campaign, it should be “It’s OK to Tell” – that anyone wishing to be involved in Research won’t be out of pocket for one day whilst the multi-million pound funded Research Study processes their expenses claim.


  3. Luckily not all “PPI” leads face a ceaseless chain of command and no upward career progression ! Rest assured that in Brighton and Hove there is great work happening , the “PPI” lead – me- still believes in fulfilling the mantra of outing patients at the centre of their care and there remains opportunity and innovation in my work! It’s not easy, not everyone “gets it” in the CCG world , but still worth striving for . Looking forward to working with you David !


  4. After years of so called involvement I have more or less given up on PPI. Sadly this blog resonates big time. I do wonder after several incarnations and decades of so called PPI why we are still at this stage. More or less everything you wish for (cannot see payment ever being accepted unfortunately) should be the norm if Local Healthwatch was delivering what Mr Landsley said it would deliver. Or do we have the Local Healthwatch that many of us foretold as the legislation was developing, controlled by lack of funding and the commissioning intent of Local Government?


  5. How true all this rings and that is so sad. After all your work and experience, for you to feel this way, things must be bad. And they are! We’ve just lost our payment protection oops wrong acro. Huge pressure applied to point of bullying because “they” want to tick boxes. Make no mistake, ticking boxes is what it’s about. And ticking boxes is another name for power and sadly, there’s NO accountability.
    Network is great idea; network for solidarity and learning and support. Count me in. Not weird but wonderful (all of us)


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