Lisa oval

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.



  1. I’ve thought – but never expressed so well – similar things about the increased pressure on lay people to offer up their knowledge, experience & expertise to effectively plug staffing gaps for a pittance. Even as volunteers, the amount of commitment required has increased.


  2. Thank you Lisa
    As an expert by experience I don’t mind giving my time but it would be nice to be reimbursed my travel expenses. I’ve been invited to conferences because people want my perspective yet no expenses. Now I can’t afford to continue to do that
    For 2 years I’ve put my time and energy into a project that is dear to my heart yet I’ve never had any recompense. The others around me are paid by police, local government etc and I’m pretty sure they fill in their expenses.
    There are many conferences that I feel I could contribute towards yet to attend is very expensive so well outside my budget. A recent one was approx £100 +. £30 travel. I managed to get a free ticket but only with such short notice that I couldn’t get anyone to accompany me. When I spoke at a concordat conference a while ago it was acknowledged that my 5 minutes was probably more useful than the rest ofcthe morning. Expert voices need to be there to shape services.

    I like every word in this blog

    Liked by 1 person

  3. A really good piece Lisa, It is clear that some people do manage to extract fees for speaking at events, but a great deal depends on what they are likely to expect which is how organisers plan and prepare for events. I don’t imagine an entertainer would be expected to speak for free. Equally you mentioned professional fees, whilst some professions are known to be ones that charge by the hour, others are assumed to earn their living by the work they do. I work for an AV company and along with the MD spend hours advising organisations unpaid and one of our roles is to persuade organisations to fit hearing loops into the right setting along with the other advice. When the opportunity comes to do some work we will be able to pay our engineers, but not everything we do is profitable. We even do CPD seminars for Architects on the subject of hearing loops and have to pay for their lunches as part of this! Clearly part of our objective is to increase our workload, but in large parts it is to ensure that buildings are properly accessible.


  4. Hi Lisa, thanks for your astute observations. As an expert by experience I have often thought the same. Great work highlighting this important issue.


  5. nice one lisa ! we have had this debate for 3 decades and we contnue to do so ….as you know im very passionate about ALL the skills people who have had the experince of ill health in all its shapes and forms and the continuum of human experience can bring to the table. we still fight for respect for this within health care services and while we have and do give a great deal,of our time for free , i for one expect to be treated with equality and equity.
    NOT even going to mention the CQC ex by ex saga , but on reflection this is typical private ousourcing then to reduce peoples fee by more than half and to make the administartion so poor it makes people ill ….well!! sorry was not goung to mentuon that . ha

    it has to be said some people/ organsiations are actually doing some really great work and paying proper rates and devloping the ‘ expert’ agenda but sadly many are not and when you get a certain strategic board CCG patient engagment manager saying no sorry we cant pay experts by experience as it would destabilise other organsiions in the city …..says it all really !

    But we keep up the good fight 😉

    choice , choice and more choice !!


  6. As you know so well, lovely Stephanie, this stuff is wearing and horrible and unfair. It also causes schisms that add unpleasantness and distress to people least equipped to bear them. Thank you for all you have done in the past year to help me think about this important subject. Watch us go as we develop our arguments xxx


  7. I was also very uncomfortable with the often tokenistic involvement of experts by experience in the NHS. When reimbursement was raised for their contribution the conversation was torturous. The irony is their involvement brings so much to service design improvement and evaluation.


  8. Thank you. I share your frustration and for me not always being paid for the many areas I contribute to. I have started to say no when I’m asked to sit on interview panel, especially when it’s all day. I hear the rhetoric of we value service user involvement it’s vital said people sit on interview panel, yet £15 for a days time is the sum of my expertise. This also impacts on my fragile self-esteem. I am lucky I can pick & choose.


  9. Thank you Lisa. As an ex-Expert I heartily endorse your sentiments. It’s not just about the pay. Many of us have refused to work for the CQC’s new contractors because while we’ll happily give our time to charities for a moderate wage (and sometimes, no wage) we won’t be exploited by a private business that has no understanding of the Expert by Experience role. By downgrading the pay rate so dramatically and making no effort whatsoever to keep experienced members of a highly skilled workforce, that business, Remploy has shown disdain not just for us, but more importantly for the service users we were proud to represent.


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