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

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.

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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.

David Gilbert is a former mental health service user. He has 25 years experience of working with, and for patients. Amongst other things, he was Head of Patients and the Public at the Commission for Health Improvement, and Patient and Public Involvement Director at NHS Croydon. He has also worked at the Kings Fund, OPM and Consumer Association. He set up InHealth Associates seven years ago. He was co-founder of The Centre for Patient Leadership that originated the notion of patient leaders and patient leadership (with Mark Doughty), and was awarded ‘star leader’ status in the recent HSJ/NHS England Patient Leader Awards. He currently works part time as Patient Director, Sussex Musculoskeletal (MSK) Partnership – the first role of its kind in the NHS. David is a leading thinker and doer in the field of patient and public engagement and is a respected strategist, facilitator, researcher, trainer, writer, connector and communicator. He has worked with over a hundred local, national and international organisations to help develop effective ways that patients can be true partners in health and healthcare.

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