Let's Talk About Power - Here Come The Patientistas

by David Gilbert

October 19, 2016

Let's Talk About Power

Is the fact that we don’t know what to call ourselves – patients, users, clients, etc – or whether we are patient leaders, partners or advisers, etc symbolic of a deeper problem? Divide and rule.

As long as there is no collective identity for those who have life-changing illness, injury or disability, those who struggle with their health and well-being, or those who have long term conditions, then we allow ourselves to be labelled by others and are a fragmented bunch. This may also be why we sometimes ‘compete’ for space, get involved in internecine squabbles over who should be sitting at the (limited places at the) table. Divide and rule.

Maybe it’s not just the name. Maybe we are too coy about talking about power. Maybe we are too nice. We will happily argue about semantics and get upset if people don’t call us the right thing (understandably – words come with baggage), but we still will prefer to talk about words like ‘empowerment’ ‘activation’ ‘partnership’ ‘collaboration’ ‘co-production’ etc and avoid using the P word. Why?

Do we - as 'patients' still seek permission before we do stuff? Wait to be ‘let in’? That’s because there aren’t enough of us doing the ‘letting in’. Because there aren’t enough patients (place any word you like in there) in power to do the letting in, opening the doors, the flood gates…

Meanwhile, the well-meaning, policy wonk cartel made up of the Kings Funds, Health Foundations, Nuffields, etc continue their insightful diagnostic analyses into what’s up with health systems, but fail to get the real solution – that patients as partners in co-decision making are the solution, and the route by which to find the solution. That, without ceding power (why would professionals want to do that?) then the NHS will continue to fail. But then again, those organisations, like the rest in the NHS, have few patients at senior level, none in their exec teams and few on their Boards. Same is true of most ‘patient’ organisations, with a few shining exceptions.

Those in power do not want to talk about power. After all, if you are in power, you may have a blind spot about how powerful you are, and/or won't want to upset yourself by thinking you should share it. Maybe it's a bit scary. Who of us wants to let go? It's a common feature in human history - those with privilege will pretend that it is not about privilege. Those in power will disguise the rules of the game and, if pressed, will find marginal things to focus our plebeian attention on, rather than redesigning the rules.




Yes, the system is tinkering with patient-centred solutions at individual level – the rhetoric of shared decision, self-management, access to patient held records, etc. But without power at a macro-level, there is no change. Time and time again over thirty years in this exciting but wearying world, I have seen ‘innovative’ projects, ostensibly patient-centred crumble under the weight of professional capture. Perhaps it’s time to match our stress on individual partnerships and better relationships, with a bit of muscle and robust thinking about power and institutional structures.

I was listening to Woman’s Hour, and hearing inspirational testimony (better than that derisory word ‘anecdote’) from feminists who have changed the world. One said ‘it’s about changing the terms of the debate’, and went on to argue that you cannot do that without having women in power and leading organisations. Precisely.

Meanwhile, healthcare policy is a patient-free zone. No real power in care.data. No power in the Lansley Reforms. No power in STPs. No power in the Junior Doc debate. No power. (See 'The Hedgehog - what happens when policy making is driven by fear') And poor policy making is at the root of much of our problems.

We can continue to muck about at the edges. We can continue to get ‘involved’ and argue the toss about whether we get paid more than bus fares to turn up at meetings. We can continue to get involved in projects as reps or story tellers. We can continue filling in questionnaires and coming to focus groups. We can continue contributing ‘case studies’ and ‘tools’ for well-meaning professionally-designed resource materials. But much of this is a waste of time, if policy and practice isn't changed at root and branch level. And how will this happen? With power.


The Outsiders

It is beginning. It is beginning outside the ‘system’. Entrepreneurial outsiders like Michael Seres (@mjseres), Denise Stephens (@enabledby) and the like are shifting the terms of the debate in terms of innovation – inventing stuff alongside patients and service users that really change lives. Folk who are cleverer than me and au fait with the online world are taking apps and wearables and putting control of data and organisations in the hands of users. And of course user-led disability organisations have been arguing for decades around power and who controls the agenda.

Now we need ‘inreach’ – we need to be like an octopus and reach into the systems and the organisational structures and change them. Ironically, the citadels of power are desperate to change. Healthcare professionals are beginning to reach out to work with us – can see that we can reframe problems, bring different solutions, change dynamics, etc. (See 'The seven things that patients bring'). But at the same time, many higher up in the hierarchies are shit scared of giving up power and money.

Power doesn't necessarily mean bossing people about. It doesn't have to mean wealding a whip. But it does mean, as one canny service user said last week, ‘putting my nose into every part of the business’. It does mean being present when people are deciding on where to put hospitals, where to divert money to, where and how staff will be utilised, how to plan for the next five years. It does mean asking questions at the heart of healthcare and taking part in the art of decision making.

Yes we need to model the sorts of behaviours we expect from others. But, real leadership can only come with a shift in power and influence at the top of health care organisations – as well as the middle and everywhere else.

You have to equalise power distribution, as well as model that equality once you get there. You have to re-balance the scale by adding a little weight to one side.

We can’t shift to prevention agendas, peer-support, better involvement of the voluntary sector (code words like ‘upstream’ and ‘devolving’ abound) without shifting the money. Shifting money might (or might not?) mean fewer healthcare professionals and (definitely) more people who know about patients’ and lives in their communities. Sorry, it’s not always a zero sum game.

And, yes there will be losers. Let’s get real and have those difficult conversations in the open. The STPs would have been a good place to start, but it’s too late for real engagement there. They are a disaster waiting to happen because all conversations so far have been in secret.


More than desirable

One or two Patient Directors in one or two organisations aren't enough. Nor is a commitment to co-production. We could start by making it ‘desirable’ or even ‘essential’ on staff person specifications that applicants should have ‘experience of being affected by life changing illness, injury or disability (IID)’. And interviews should ask how they plan to bring that expertise and insight into their role. At least half of all jobs in NHS organisations should go to people who primarily identify themselves as people with a LTC or IID.

We need patient-led journals, patient-led think tanks, patient-led conferences, seminars and events, local and national patient and carer networks and access to, and real investment in patient leadership training. And if the system won’t fund us to do it, or we don’t get permission, we should find ways to do it ourselves.

Yes, it's hard. Yes, we want our work to be ‘embedded’, but often ‘embedded’ comes to mean plagiarism, co-option and neutering. Isn’t it time to take control of our own agenda, as the feminists have?

We don’t need permission. The heterogenous and fragmented individualism that has come to be the hallmark of a divided movement, could be our strength. We are everywhere, working in diverse ways. But we have to step up and talk properly about power.

Here come patients. Los patientistas. Patient-citizens? PaZiens? Who cares. Whatever the words we use, let’s make sure we start talking about power. If not us, who will save the NHS?

©David Gilbert 2016

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3 comments on “Let's Talk About Power - Here Come The Patientistas”

  1. As ever David Gilbert you put things into perspective and so well . No one has the time or the money to get all of us Patient Activists together to start a movement that gives Patients an equal say to professionals in the control of NHS Bodies . Lay Members and Non Executive Directors were in some way a start but most have gone native and just roll over belly up to their Executive Colleagues and don't give a patients voice in Board Matters . Some organisations have token Patient Leaders who sit at a middle management level but get no say in Board decisions . The CCG where I live only gives Patients and Public Voice a chance to ask direct face to face questions at their 2 monthly Governors Board Meetings and then only 15 minutes and you put your questions in 7 days in advance so the spin can be put on them . I also ask questions at the Health and Wellbeing Board of the Council and the Scrutiny Committee to do with Health . May I say I am a lone voice often at all these meetings . So it is a long and lonely path we Patient Activists walk with no end in sight and even the likes of NHS Citizen is run by the NHS professionals and only the chosen few Patients get to go to planning meetings . The same ones all the time . I wont be beaten though even though I was 70 on Monday this week . It is a fight the likes of myself and others like David will continue until we either die or get an equal say for Patients on every Board to do with the NHS even the NHS England Board where the CEO should have suffered or is suffering from a life threatening illness . POWER TO THE PATIENTS

  2. Hi Speaking of tinkering and patient data, you might be interested in this. Written a while ago to try pressure the HF into action - no joy there! best wishes Andrew

    Andrew Rix Independent Research and Evaluation Consultant Honorary Researcher Swansea University School of Medicine Chair, Public Delivery Board, Health and Care Research Wales

    2 Brynau Rd Cardiff CF15 7SA mob:07778057927 home 02920 214374 email:[email protected] http://uk.linkedin.com/pub/andrew-rix/21/b4a/955/

    *Gmail automatically scans emails and attachments for viruses when sending and receiving. *

    On 19 October 2016 at 12:42, Future Patient - musings on patient-led healthcare wrote:

    > davidngilbert posted: "Let's Talk About Power Is the fact that we don’t > know what to call ourselves – patients, users, clients, etc – or whether we > are patient leaders, partners or advisors, etc symbolic of a deeper > problem? Divide and rule. As long as there is no collective " >

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