With growing frustration, I watch how friends who are “experts by experience”* are increasingly being treated by the NHS and the various bodies tasked with inspecting and improving it. Such as being invited to be part of an inspection as an equal member of the team. But being paid many times less than anyone else, possibly even less than the living wage. Or being asked to join a group to produce guidelines or develop a new treatment or service change, bringing knowledge, skills and experiences that no-one else around the table can possibly have, for nothing or for a fee that is so close to nothing as to be insulting. Or being invited to speak at a conference but being told that “we have no budget for speakers” when clearly the conference is a commercial event AND the other speakers are being paid either by virtue of being in full time employment or a handsome fee.

I had an NHS career spanning 41 years, including 13 as a chief executive. My career as an expert by experience only began officially in 2013. But I have the benefit of an index-linked pension, which allows me to live well (although not as well as some might think because of decisions made when I was young and poor). Plus I can still earn money doing other things. So I can make choices about how I respond to people who invite me to speak at their events or otherwise draw on my experiences.

But many of my friends do not have that luxury. Opportunities to develop careers have been fractured by illness, disability and arcane, terrifying benefit rules which are themselves disabling. Their earning potential is therefore limited.

And my friends find that their generosity, goodwill and desire to help others is increasingly being abused. Despite rhetoric about patient centred care, co-production, peer-learning and a whole load of other worthy aspirations spouted by leaders in and around the NHS, those very same organisations are showing an increasing lack of respect and value for the only people who can truly help them achieve their improvement aims.

I’ve done it myself. Years ago, when I saw the size of the budget allocated to service user involvement on an important capital scheme, I knew it would be the first place I would have to go to make savings, should any be needed, despite it being a pittance compared with the professional fees being paid to architects, quantity surveyors, lawyers and the like. I did it, and at the time I rationalised it because I felt I had no choice. Looking back, I feel ashamed.

Why do we, as a society, place so little value on what matters most? Why do we pay the person who cares for our loved ones when they are dying barely enough to cover the rent on a pokey flat, whereas a man running some oil company gets £14 million a year? And why we do only see success in terms of earning potential, rather than the gifts a person brings to other humans and the planet?

I can’t change societal values. But I can make an impact on what we do in the NHS. I am lucky to have a voice. And I’m going to use it.

Wise managers understand this:

• If you can save money and achieve the same outcomes, that is a cost saving
• If you spend the same amount of money but do something better, that is a service improvement.
• If you spend more money to achieve a better outcome, that is a service development
• If you spend less money and achieve less, that is a service cut
• But if you spend less money and pretend you are doing it to make an improvement, that is usually a lie and a cop-out

So to the people who say that they’d love to pay experts by experience what they used to pay them, or even anything at all, it’s just that the money is really tight and it’s getting even tighter, I say this. Please think again. What else are you spending that public money entrusted to you on? What really matters to you? And if you must make draconian savings, why not try being as parsimonious with your auditors, your bank, your staffing agency, all your other contractors for professional services, your regulators. Even your directors and your staff.

And let’s see what happens.

And to my expert by experience friends I say this: we have something that the NHS should treasure, our personal intellectual property. Let’s continue to be generous and compassionate in how we share it.

But let us also expect respect.

*Post Script: I understand that the term “expert by experience” is of itself problematic. It implies that all the person brings is their experience of a condition and the treatment for that condition, rather than a much wider set of skills and attributes that, almost certainly, will bring richness and intelligence to the debate and from which those who work in the system will benefit in ways they had never envisaged. If, after conversations with wise people, I can work out something useful to say on this, I will. For now, I apologise about the paucity of the term.

Post Post Script: It is less than 48 hours since I posted this blog. It has been looked at 700 times, stimulated over 500 responses via Twitter, and comments such as the ones below. It seems that I have touched a nerve both for those affected by the things I have written about, and for those working in organisations that describe one thing in their values but seem to act in a different way. That was the purpose; there is no point blogging if there is no subsequent debate.

I am grateful to all of the commentators, but especially Alison Cameron @allyc375 who helped me over the terminology and with whom I am hopefully going to be doing a double act soon on this very subject – watch this space. To Dr Shibley Rahman @dr_shibley whose original thinking brightened my Saturday evening. And to David Gilbert @DavidGilbert143 who reminded me that Patient Leadership is a useful way of thinking about this. He kindly agreed to me referencing this series of articles co-written by him and Mark Doughty @markjdoughty which I would urge anyone who wants to think more deeply about this to read.

Time are indeed tough. And in tough times, it helps to know who our friends are, and whether the values they tell us they espouse are really their true values.

I send loving kindness to everyone reading this.