patient leaders

Respect

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.

 

Blessings
books

Books that have inspired me this year by @Suzypuss @jamestitcombe and @molly_speaks

 

 

 

 

 

 

To keep depression at bay, it helps to count one’s blessings. My Twitter friends are a very big blessing. Here are some thank you messages for 2015:

  • To campaigning journalists @andymcnicoll and @shaunlintern for supporting underdogs including mental health care and people with learning disabilities. Please never stop.
  • To Adam and Zoe Bojelian who lost their dear son @Adsthepoet in March 2015 but keep his legacy alive via Twitter. You are in our thoughts as you face a first Christmas without your wise, beautiful boy. We will never forget him and what he taught us.
  • To @JamesTitcombe who lost his baby son and has courageously campaigned for greater openness over mistakes in the NHS, despite some vile online abuse. I treasure my copy of Joshua’s Story. And I thank James for all he continues to do to make the NHS safer for patients and their families.
  • To all who bravely act as patient representatives, such as the indomitable @allyc375, and remind regulators, commissioners, managers and clinicians what the NHS is actually for. Only they know the cost of speaking up. Go Ally, @anyadei @ianmcallaghan @DavidGilbert43 and others who’ve earned the right to call themselves patient leaders.
  • And to @HSJEditor for taking a risk and running the first HSJ list of patient leaders. Thank you Alastair. I think it was a game-changer.
  • To those who’ve grasped one of the most feared conditions and are making life better for those living with it. I mean you, @dementiaboy and @dr_shibley. To you and others like you, thank you for refusing to leave dementia in the too-difficult box.
  • To @Liz_ORiordan who is generously sharing her experiences of breast cancer care, which for a breast surgeon is a pretty massive deal. And for some other stuff.
  • To @EastLondonGroup, who introduced many of us to a group of previously little known landscape artists from the early 20th Century. Sunday Morning, Farringdon Road has become a landmark of my week.
  • And to @penny_thompson, for pointing me to ELG and for always being true to her values.
  • To poet @Molly_speaks for painting pictures with words in her lovely new book Underneath the Roses Where I Remembered Everything
  • To @HPIAndyCowper, for his excoriating, original analysis of the NHS, and for his support to me in my scribblings.
  • To @clare_horton for running the excellent @GuardianHealthCare and even including some of my pieces. This meant so much.
  • To @seacolestatue @EAnionwu @trevorsterl @thebestjoan @pauljebb1 @joan_myers and many others for plugging away in the face of seemingly impossible odds. The Mary Seacole Statue will rise in 2016 as a permanent memorial to someone who showed how, if something matters enough, we should never give up.
  • To @nhschangeday @PollyannaJones @helenbevan dani_ellie @jez_tong @LydiaBenedetta @cjohnson1903 @WhoseShoes @fwmaternitykhft @DaniG4 @damian_roland and so many others for including me in NHS Change Day 2015. I was meant to be helping you but I gained many times more than I gave.
  • To @TimetoChange @suebakerTTC @paulfarmermind @carolinewild @danbeale1 @2gethertrust @NTWNHS @rethink @mindcharity and a whole raft more for being a major part of my life this year, working together to tackle the stigma that still exists within the NHS towards folk who, like me, experience mental illness from time to time but are so much more than our diagnoses. Here’s to you.
  • To @nurse_w_glasses @anniecoops @drkimholt @gourmetpenguin @AlysColeKing @DrUmeshPrabhu who show by words AND actions that compassion is alive and kicking amongst health professionals
  • To wonderful women leaders such as @SamanthaJNHS @BCHBoss @JackieDanielNHS @ClaireCNWL @CharlotteAugst @KMiddletonCSP @Crouchendtiger7 @DrG_NHS @VictoriBleazard @JaneMCummings @CarolineLucas @juliamanning @TriciaHart26 @clarercgp who stick their heads above the parapet and make the world a better place
  • And folk like @NHSConfed_RobW @ChrisCEOHopson @cmo @profchrisham @ProfLAppleby @WesselyS @nhs_dean @NHSE_Paul @ScottDurairaj  @stephen_thornton @jhazan @rogerkline  who prove that leaders on Twitter don’t have to be women to be fabulous
  • To bright, bubbly new leaders like @anna_babic and all those I’ve met via @NHSLeadership, who fill me with hope for the future. And to @Alannobbs @kirsti79 @NoshinaKiani and all the other great folk at the NHS Leadership Academy. You do stunning work.
  • To @GrassrootsSP and everyone who works to prevent the long shadow cast by suicide. Thank you.
  • To everyone who supported me in my bike ride for @samaritans in the summer. Especially @NurseEiri and @JackieSmith_nmc. They know why.
  • To @Suzypuss whose book The Other Side of Silence has inspired me to get on and finish mine.
  • To wise owls @johnwalsh88 @TelfordCC @KathEvans2 @gracenglorydan @timmkeogh @RecoveryLetters @profsarahcowley for being beacons when the world feels a bit too hard
  • To friends who also experience mental illness from time to time and who share their thoughts and feelings so generously. Thank you @BipolarBlogger @Sectioned @BATKAT88 @annedraya @clareallen @corstejo @schizoaffected @rabbitsoup_zola and many, many others. On a not-so-good day, yours are the tweets I look out for. You bring me hope.
  • If I could, I would add everyone else I’ve chatted with on Twitter this year. To everyone I follow and who follows me: Twitter is 97.5% good for my mental health, and that’s because of all of you. Thank you all so much. I wish you all much love for 2016. You rock :mrgreen: :😎💃❤

 

Don’t be mean*

In my blog last week, I mentioned that my next one might be contentious. This is it.

Tonight, Health Service Journal (HSJ) have announced their inaugural list of Patient Leaders.

I am stunned to be on it. Plus a little bit anxious and also prouder than I have felt for a long time. Here’s why.

I’ve been on a few lists in my time. I remember the first one of influential women in the NHS. Some of us got a bit of stick for that, as did HSJ – “What about the influential men?” came the cry. Take a look at the top of the NHS, and you will see why there is a need for a list with just women on it. Even more so for Black and Minority Ethnic NHS leaders. Hats off to @NHS_Dean who has been open about changing his mind recently regarding quotas on Boards. It’s not too late to join him.

There are many other reasons why such lists can cause controversy. One is that they seem to include all the obvious people, who have reached positions of influence “just” by the nature of their jobs. Who have apparently been in the right place at the right time. Whose mistakes haven’t yet caught up with them. Or who are lucky enough to have a face that “fits”.

I’ve been there and even made such remarks. And I know that, although doing so might have made me feel better about not being on some list or another myself, it also introduced a tiny chip of meanness into my heart which I then had to work very hard to eradicate. Or it risked undermining me and any future good I might bring to bear.

To the people who are feeling mean about this latest list, I say this. Yes, some of the names on it may seem obvious to you. But only they know the personal cost of being there. And yes, there may be some, me included, who are relatively late entrants to the patient leadership world. But that doesn’t make them, even me, unworthy, nor does it in any way diminish the extraordinary contribution of those who have been doing this labour of love for much longer than the rest of us.

Being a member of an exclusive, perhaps even excluded club may feel good, especially one whose purpose has been to act as a ginger group. But patient leaders are doing work that is too important to remain on the outside looking in. One day, and I don’t think it will be all that long, we will see experts by experience appointed into paid leadership roles right across the NHS and care system, as a matter of course. We must of course protect their independence. But we must also stop seeing them as an optional, expensive, fortunate and patronised extra.

There is nothing I did throughout my 41 year NHS career that was harder than sharing my own experiences of mental illness, facing up to going back to work after my last episode of depression, and then retiring, I hope with dignity, to forge a new career as a writer and mental health campaigner. I know it will have been equally hard for others to have followed their personal, not always chosen, path.

So let us warmly thank EVERY patient and carer leader for the courage, wisdom, creativity and generosity they bring to improve our less than perfect, still beautiful, deeply precious NHS. And to all those on tonight’s list, here’s to you. I feel humbled to have joined your extraordinary ranks.

*With thanks to the extraordinary Kate Bornstein, whose philosophy on life is “Do whatever it takes to make your life more worth living. Just don’t be mean.”