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Valuing What We Bring - an open letter to NHS England

by David Gilbert

October 16, 2019

Last week, our book The Patient Revolution – how we can heal healthcare’ was launched at an event at NESTA. There were 160 people there – patient leaders, clinicians, policy makers, and loved ones. The event was live-streamed and stimulated much debate on social media.

The book charts the stories of Patient Leaders – those who have been through stuff, who know stuff, who want to change stuff.

One abiding theme throughout the book is about how local and national NHS organisations systematically undervalue the ‘jewels of wisdom and insight we bring from the caves of suffering’. The book is receiving good reviews. I expect there to be transformation bla bla

Now, back to earth with a bump.

Yesterday, I received an email from The Head of Something at NHS England. It stated: “We would be keen to understand more about the approach you have taken in Sussex to involving patients and the public in patient safety to inform our work and, if you are interested, explore how you could be usefully involved in the development of this work”.

Finally, I thought! Then I carried on reading:

“In accordance with NHSE/I PPV expenses policy we would be able to offer reimbursement of any travel expenses and, depending on the nature of your involvement, a potential payment of £150 a day or pro rata – we are not, however, in a position to pay consultant fees”.

I decided to consult with others as to how to respond. This was as much to stimulate dialogue on a contentious issue as to inform my views.

After a lively twitter discussion on issues concerning payment and, after consulting with all the contributors in the book – five of whom got back to me within minutes expressing strong views – I penned the following.

I hope it further stimulates thinking about how the system better values our contributions. La lucha continua.


Dear J

Thank you for your email. On reflection, I am going to say no. I would like you to pass this email on to S please. My thinking goes something like this. I have worked for 35 years in and with the NHS, often for free. I am 57 years old, my wife does not earn, I have two kids and no pension.

A freelance consultant calculates his (in my case) wage by assuming that he earns a daily rate 150 days per year, the rest of the time is spent trying to find work. Out of that salary must come tax, work equipment, NI, pension constitutions, etc.

Thus, £150 per day, values my time as equivalent to a salary of 150 days x £150 = £22,500. Gross (pun unintended).

You are asking me to provide strategic advice, based on my own thinking over the last four years at Sussex, plus the entirety of a career spent devoted to furthering patient leadership and effective engagement.

You are asking me to provide consultancy advice. I am not here a patient providing feedback on his experience of using services. Nor am I being asked to participate in a workshop or such like. You are asking me for a large part of the contents of a brain that has worked overtime for many years on these issues.

I appreciate that NHSE developed a payment policy. But it is now becoming a millstone around patients’ necks. It was intended as a way of lifting us off the floor via recognition, but it has turned into a ceiling that we bang our heads against.

Given also that Directors in your organisation earn about £150k per year, I am being valued effectively at 15% of that value.

I am sorry, but if an organisation such as yours, with the resources you have at your disposal, is not able to be flexible, then I feel additionally aggrieved.

I have spent a long time supporting patients, users and carers to be valued properly, and I have to practice what I preach. While I am sure I could help you, I do not feel sufficiently valued by your offer to be able to take you up on your offer.

If you want to know a bit more, maybe you’d like to buy the book?

None of this of course should be taken personally, or be seen as coming from someone who is a money-grabber. I do a lot of work for free, mainly for people with whom I have a trusting relationship or for organisations who cannot afford a fee. I am afraid that at the moment NHSE does not qualify as either of the above in my mind.

I wish you good luck with the work, and if you were to reconsider your guidelines then I would be happy to chat (NB. Most guidelines, as NHSE knows, are there to be implemented with flexibility).

Kind regards


Postscript: This morning I received the following response.

Dear David

Thanks for letting me know your position and I’ve forwarded your email to S as requested.

Best wishes


(c) 2019 David Gilbert

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3 comments on “Valuing What We Bring - an open letter to NHS England”

  1. Great response. If the NHS really values us it needs to show that, with payment as well as words, which are in the end, meaningless if they are not willing to pay appropriately when they do pay others in the room very well indeed.

  2. Yes, indeed bla, bla about how valuable patients are, but not willing to pay for that value.
    I am facing the same challenges in Switzerland where I live. What about starting a company/founding an association which working patients belong to and which collects consultancy fees for patient experts? This is what I am thinking about.

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