I Should Co-Co: time for patients to say no

I should co-co = British phrase originating from the 30’s. Rhyming slang for I should think so or I should say so. Used sarcastically so the literal translation is I should think not.


The bad news: This will not be the best blog I have written. I am not at my most articulate. And I am cross. The good news: It will be short.

Last week I fell ill due to over-exertion. I have a GP appointment in an hour and may have a chest infection. My inability to look after myself and my willingness to accept work for which I am not paid or valued has led me directly to the GP surgery.

I have to learn to say no. And today I finally did. I am asking you to do likewise. For your own health. And for the future of healthcare.

Like many patients, users and carers who want to influence change, we have to balance our zeal for the cause, with looking after ourselves. And yet time and time again, we are encouraged, flattered, seduced, cajoled and downright emotionally blackmailed into doing too much. Often for free.

At last I said no

This morning I was invited to input my expertise yet again for free into a national initiative. I was told that, while there was no money in it for me, it would yield fascinating insights and learning, enable me to shape future health policy and open up networking possibilities. I was tempted… and then my hacking cough told me I needed to say no.

I said no. At last I said no!

I made clear that I was disappointed that a major multi-million pound national initiative on future models for healthcare (no less) had failed to factor in any costs for patient and public engagement. Yet again the emptiness of the rhetoric about ‘nothing about us without us’ was being revealed.

I then got a polite response from the well-meaning leader of the work. He asked me not to judge the national agency that was doing the work, as he had not yet got around to understanding the system and was sure that there was some way of funding the role of patients and the public in the future.

Here is what I wrote back:

“I have shared my expertise (free) on numerous occasions without adequate valuing of that contribution. So, this is merely one more example, I’m afraid. My goodwill has been steadily eroded by the practices of national agencies who talk the talk of working with patients, but do not really mean it. Sorry, I am exceedingly weary of having these sorts of conversations, and again I do not mean to offend anyone personally – people around you may mean well, but seem not to be able to bring rhetoric and practice together.

Furthermore: I have worked in patient and public engagement for 25 years. I am not ‘just’ a patient. My experience as a consultant is that if an organisation initiates a programme of work, then it will have a programme budget, and that will cover particular workstreams. If the people leading the programme are serious about ‘putting patients at the centre’ the organisation would have ensured that it sets aside resources to do precisely that. In my opinion, the fact that you are left alone to cope with the labyrinthine processes of the agency’s ‘payment policies’ strikes me as indicative of the agency’s mindset – ie one that has a blindspot about engagement – the engagement cultures and systems there clearly do not ‘put patients at the heart’.

I should add that I run a management consultancy business. If I were to be involved, I would be charging a consultancy daily rate, not a ‘patient stipend’. Once again, I thank you for the transparency and generosity of your response. I just wish the agency could mirror that”.

I have not yet had a response. But I copied my note to a couple of close allies, who agree with what I wrote. But it’s a risky strategy! Will I be marked down as a trouble-maker? Will rumour of Gilbert’s instransigence float down the corridors of power (if they care that is). But, sometimes you have to speak the truth.

And you?

I am asking all patients, service users and carers to ‘just say no’. Say no to invitations to attend focus groups, workshops, events, consultations, steering groups, committees, etc unless you get paid. Or receive some other like-reward that values your expertise. Stop being so flattered or grateful for being involved – it is your right. They need you more than you need them. It is time for equal relationships.It is time for patients, users and carers who get ‘involved’ to ‘just say no’.

When they say this is an opportunity to share learning, they mean ‘we want to suck your brains’. When they say, you can help ‘shape the future’, they mean ‘we don’t value you enough to pay you, so we will make up another excuse so as to get at your expertise’.

By colluding with those in power and saying ‘yes’ on their terms, I believe we are modelling inequities of relationships, propping up a paternalistic system and sustaining the status quo. And we are under-valuing ourselves and echoing the patient/child role in the system. And, we will make ourselves ill.

There is so much talk about co-production, co-design, co-this and co-co that. I see lots of inspiring examples at local level of people walking the talk. But when I glance at the policy makers, the decision-makers, the national agencies, so-called thought-leaders and some of the think tanks, I see… talk.

And talk is cheap. And co-co is only good for sleep.

Now I’ve got that off my chest, I’d better go and see the GP about my chest.

13 thoughts on “I Should Co-Co: time for patients to say no

  1. Absolutely “spot on” ! There are too many organisations who take advantage of people with lived experience of a health condition with the ‘carrot’ that the work they do will effect positive change but nothing comes of it ! Very often people who get involved for the right reason(s) with such organisations do end up out of pocket because things like travel expenses are not reimbursed (or if they are, it takes weeks to recover the outlay !).
    Hope the cough gets better.


  2. I agree so much with this that I could have written it myself ! It must echo what a lot of people have found – that ‘involvement’ isn’t all it should/could be, and that even with ‘Payment Policies’ in place for some organisations, people with lived experience who get involved for all the right reasons, are left out-of-pocket with basic things like travel expenses.

    Hope the cough gets better.


  3. Brilliant blog that echoes so many of my own thoughts. I’ve seen too many times the way badly delivered ‘involvement’ and ‘consultation’ is used in order to justify the changes nobody wants.

    Liked by 1 person

  4. Hear hear. I began my policy of just saying no about 18 months ago – after about 20 years of being presumed to feel honoured and privileged by being invited to sit for days on end round tables of highly paid professionals just to tick their proverbial box. With probably one noticeable exception, my experience has been that my precious “voice” has not made the slightest difference to anything. My involvement has not been just in health but in other sectors too where the “user voice” is deemed oh so very valuable but not valuable enough to shell out for. I have no regrets except that I wish I had done it sooner.

    Liked by 1 person

  5. I completely agree with this blog post. Between 2004-2010 I did quite a bit of patient involvement stuff both for MH trust and major charities such as Rethink. I rarely got paid. The only time I did I was given inaccurate information which, incredibly, led to 3 years of explaining to different agencies that I wasn’t employed. I particularly disliked that involvement even lacked structured training, in contrast to other charities like St John Ambulance, that don’t pay but give definite value to their volunteers through high quality training. This was an issue I raised repeatedly, particularly with Rethink but they never made changes. I couldn’t agree more with the sentence “And yet time and time again, we are encouraged, flattered, seduced, cajoled and downright emotionally blackmailed into doing too much. Often for free” I still feel guilty that I have reduced my involvement.

    Liked by 1 person

  6. I think you need to reconsider the choices you make … and stop blaming people for asking you to do something that you find hard to refuse. If you have a problem saying no then this is your problem not the fault of the people asking you.

    And perhaps you might consider this. In recent years the NHS, along with all the other public services have suffered from deliberate underfunding thanks to this governments dogmatic antipathy towards public service. And Dave and his millionaire school chums justification for this is that his big society, charity and philanthropy are going to make up the slack. So don’t blame the NHS for asking for your contribution for no financial reward, they have been forced into this position. And anyway, surely this country is full of similar millionaires who have plenty of spare time to do good works for the poor and needy, so you don’t have to feel bad about not being able to. Perhaps they can ask their servants to attend on their behalf!

    And if you voted for the current political incumbents then you have no right to complain about this. So when you put your cross next to a party next May, think harder about the commitment your choice might entail.

    I do not mean to be personal, but try to be a bit less naive …. and money isn’t everything in life!


    1. Entitled to your views. Interested that you say are not being personal and then call me naive. I have been working in health care for 25 years on behalf of patients and citizens. And no I did not vote for the Tories. The powerful continue to prop up the status quo. Do read the other comments from patients and citizens who are sick to death of being under-valued for their expertise.

      Liked by 1 person

  7. David – great piece, well done on taking a stand in this instance. It’s hard to justify how a national body could assume your management consultancy expertise should come for free simply because it’s patient focussed.

    I do question though whether payment is always appropriate for patient engagement activities – is payment how all patients would want to be valued? It seems to be there needs to be a range of ways to recognise involvement across activities that are relevant and meaningful to different patients. My experience is that not all patients want payment to help their local NHS trust, for example; what they do want though is recognition that their involvement has had an impact, that their views are responded to and actually used to make improvements.

    So there are other ways to demonstrate the value patients have – access to training, offering job references, corporate award schemes – depending on what works best for the individual getting involved and how they are being asked to contribute.


    1. I agree that there may be other ways. But in my opinion there should be a choice of ways to value people’s expertise. I personally am not interested in those other incentives – I need to feed my family!

      Furthermore, on many occasions, the reality is that people are treated as a free good and the implication is they should just be grateful to be asked. Many in addition become accustomed to these low expectations just as they (on some occasions) have become accustomed to being treated poorly in the healthcare system.


  8. Jamie K is spot on.

    I’m a health care professional for 22 years. I give up my evenings, weekends and spare time to try to get change to happen. I am not paid for most of this work. I often fund travel out of my own pocket (like yesterday and like tomorrow night).
    Imagining that all health care professionals are making lots of money at meetings like this is simply untrue. If I was motivated by money I would be doing private work or going abroad. I do what I do because it helps patients and I’m an idealist and believe in the nhs. Would I be so generous if I was the ONLY unpaid person in the room? Not sure. If everyone was motivated by money? Don’t think so. The sense is that we are “all in it together”.
    In other words, please recognise that patients do not hold a monopoly on the feeling of righteous indignation about not being paid. The NHS is underfunded and struggling. We should all help, shouldn’t we?

    Liked by 1 person

    1. It’s a fair challenge. But if you had been called upon time and time again as a free and (this is important) under-valued (in terms of your views and expertise not really being listens to or not being an equal at the table and your impact nullified) then you might be questioning why you should bother.

      Most professionals in any improvement project that I’ve been part of are there without losing money (ie as part of their salaried time).

      At root, if patients are to be valued for their expertise (and this is the right word) then some way has to be found to do that.

      In addition, when people like me step into running a business then we cannot afford not to be paid. My kids would go hungry.

      I am mainly talking about situations where there is money around – eg national improvement projects – where it is feasible,

      Patients are not turning mercenary. We only ask for our contribution to be valued as the system starts to recognise that we are bringing more than stories or data if what happened to us and our professional healthcare wisdom to the table.

      Let’s continue the debate. Thanks for taking the time to reply.

      Liked by 1 person

      1. Interesting discussion and one I feel quite strongly about. I think in some instances it’s totally acceptable for people (all people around the table) to gift and volunteer their time for a greater good, but I think there’s a difference between choosing to do that (in ones spare time having already earned a salary for our job), and being expected to do it (usually during working hours, around a table where everyone else is earning/being paid for their time) in exchange for a biscuit, travel expenses or if you’re really lucky (and yes the inference is its a big deal) you might be reimbursed e.g. £75 per half day or £150 for a full day by NHS England.

        I’m not sure patients do hold a monopoly on not being paid, and I fully appreciate that the NHS is struggling, and yet, there are some contributions that are consistently less valued.

        A recent example of mine is that I am an independent rep on an investigation, luckily there are two reps and the other’s organisation insisted that they were paid a (good) day rate for their time (their organisational day rate I believe). I had been offered £150 a day for mine (much less). I am a freelancer, I have no organisation to fight my corner, and all meetings are held in London (which given my geography, SW, guarantees every meeting comes with at least 6.5hrs travelling). If the other rep’s organisation hadn’t (rightly) insisted that their skills were remunerated appropriately, or if there had only been one rep, my value would have been reduced to £150 (6.5hrs travel + no prep time + anything from a 2 to 5hr meeting). That’s a fairly insulting recognition of my skills and time. Luckily we get the same day rate, and for the first time ever I feel more valued and more valuable around that table – and more prepared to offer my perspective!

        If the NHS (or any other organisation, campaign or project for that matter) wants to put patients, stakeholders or their representatives, at the centre then it has to start by considering their value. I dont think they should be taking advantage of staff members good will either – and know that there is still slack in a system that could be repurposed for a better good (I’ll not start ranting about awards now, but, more here http://www.georgejulian.co.uk/2014/11/20/the-data-behind-celebrating-excellence-hsjawards/ ) Maybe we should all demand better!

        Liked by 1 person

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