I have endured a week of terrible pain. I haven’t been resilient, merely held on. As the green spasmodic juices continued to be wrung from my unwilling gut, and my weight toppled by 5kg due to a ferocious bout of gastroenteritis, I merely said to myself ‘not dead yet, not dead yet’. But there were many times another part of me wished I was dead. 

I wasn’t resilient. There are no capabilities I own to my getting through. Something in me, call it the life-force if you wish, call it breathing, call it what you will. But not resilience. And it wasn’t ‘me’. Not my personality, my identity, my characteristics, my competencies, my self-leadership abilities. 

This is as true as it was when during bouts of mental pain, something in me managed to hold on. 

Pain only grants you gifts as it leaves. The only lessons, via its lessening. The immense relief. The ability to breathe, to notice the breeze on your face, to hear birds again – not to sense that their songs are mirth at your suffering, as your mind is affected by rancid interpretations of truth. And gratitude for those who love and support me, particularly my wife, Susan. 

And retrospectively, we see yet again how fragile human beings are, and being is. Though the ferocious spirit of endurance runs through our delicate energies like blood. As my wise friend, Michael Fox, once said ‘you are stronger than you think, but not in the way you think you are’. 

Stop using the word ‘resilience’. It denote a ‘grit’ of character, of ‘personality’. It speaks to a toughness of a particular type – hard-nosed, determined, armoured, wilful. It speaks nothing of softness and adaptation, but of a weary (male-defined) machismo trope. 

It denies suffering, implying that there is some sort of choice to be made about it – ‘stand up to it’, be ‘resilient’ (be a man). ‘Resistance’ is what matters – it is not a ‘going through’ pain that is required but an almost militaristic ability to defend against it, to beat it off with your resiliatory powers. 

It aligns well with stigmatising notions of ‘get over it’ or ‘mind over matter’ or even ‘be happy’ and provides a defence against anxiety for those who use the phrase, allowing them to ‘other’ the person ‘going through’ stuff. It is a double-whammy. Not only is it an incorrect description of what it is to go through pain, but foists a judgement on those who are deemed lacking in the quality.  

More deeply, ‘resilience’ speaks the language of corporate competencies, redolent of ableist societal and institutional judgement. It has been harnessed for a thousand wasted wellbeing strategies that individualise and can pin blame for suffering on the ‘victim’. 

In healthcare, the growth of a staff wellbeing industry, allows zillions to be thrown at ‘tactics for individual resilience’. This can slide insidiously into supervision and personal development plans and thus become ‘measured’ - aka did you attend that ‘mindfulness session?

This staff wellbeing industry becomes a behemoth, siloed from other corporate priorities and divorced from the systems and processes that have caused the cultural problems in the first place. It means that the NHS can be seen to ‘have its cake and eat it’ (i.e. allow poor cultures in terms of pressures on staff, yet be seen to be doing something about it). This dysfunctional approach has been exacerbated by Covid. 

So: Be with me while I endure. And I will be with you as far as I can. I am not resilient. Nor are you. We do the best we can. 

Meanwhile, everyone I know, and many more that I don’t, are really struggling at the moment with the deep chaos around them. I think this is to do with a lack of ability to make sense of what’s going on. Maybe we just (just?!) need to endure.

The changes sweeping the world, the doom-laden consequences of many of them, the frequency we hear bad news (without context), our inability to turn off stimuli in our lives, means our sense-making powers are flooded. And there are hugely competing narratives also fighting each other. Volatility, binary thinking, catastrophisation of language, the immediacy of impulsive behaviour, the sense of powerlessness we have, lead to our undoing.

Those of us who have been affected by health conditions, perhaps particularly those who have had suffered mental anguish, know well these vast spaces of turmoil, internally and around us. We try to make sense of where we are and where we are going by utilising broken compasses. Resilience it is not. It is simply endurance. Holding on. Doing whatever we can… ‘whatever gets you through the night’.

I think we are in a period of history where all we can do is endure. And, gosh we are losing weight. Those juices look vile. 

Nothing matters to me more this morning than my first bite of toast. I am brought back to the small things, the kindnesses, the moment. That is, and will be pain’s legacy. For now, we endure.  


And here is all the above, better put in poetic form. 

Sick

Attritional trips. I churn out
spasmodic green juice.

My body is eating itself.

Poetry is not for love 
but endurance. 

A gull drifts through
my life – my small square of window –
with ferocious nonchalance. 

Not dead yet, I spit. 

© 2021 David Gilbert 

As another Patient Leadership Training Programme kicks off , I wanted to tackle one of the most common misconceptions about Patient Leadership – that it is elitist – an exclusive club that is inherently institutionalised (or could be) and that can blunt patient voice. 

Those who raise these objections tend not to have read much about it, or to misunderstand what it means. 

What It Means 

Patient Leadership is about ‘those affected by life-changing illness, injury or disability being able to influence change by being equal partners in decision making at all levels’. I believe anyone can do that – with the right help and support. 

It is about bringing our newly valued and polished jewels of wisdom and insight from the caves of suffering into the heart of citadels of power. 

More prosaically, it is about people who have been through stuff, who know stuff wanting to change stuff. In 35 years of this game, I have not met anyone, black or white, poor or rich, who would not be able to do do this stuff. If they want to. It is precisely the lack of opportunities and support available that makes patient and public engagement – as it is CURRENTLY undertaken – elitist. 

Patient Leadership rips apart (if you are feeling tetchy today) or builds upon (if you are feeling charitable) traditional engagement modes of (child-parent) feedback mechanisms and (adolescent-parent) representational models.

The Assumptions 

People who criticise Patient Leadership for being elitist make one or more of several erroneous assumptions. 

First they tend to look at the word ‘leadership’ through ancient eyes. They equate the word ‘leadership’ with formal hierarchical and traditional leadership. These days, leadership means far more than that – I am not a theorist, but the intention behind the concept is that it foregrounds collaborative leadership, even ‘servant leadership’ (do look that one up) and borrows more from Brene Brown than Donald Trump. It stresses being able to influence people and change through productive relationships. 

Some see the word ‘leadership’ in ‘patient leadership’ as necessitating followers, or having to ‘represent’ the views of others. I see it more as about leading change and that we are all leaders and all followers – every patient leader I have ever met is an inspiration. And the role of a good Patient Leader is to open up opportunities for others, and in an improvement or governance role to make sure there is widespread inclusion and diversity in any engagement or patient experience data gathering activity. I have long campaigned for the destruction of the notion of representation – that the role of a lay rep is a dangerous Catch 22.

People are also tending to see me as a Patient Director as the only manifestation of patient leadership. That a Patient Director is ‘The’ Patient Leader type role par excellence. That is a total misunderstanding of the concept and the role of a Patient Director - I am not there to represent myself or anyone else, but to broker space for equalising power in training, education, research, improvement and governance work and embedding cultures, systems and processes for patient leadership, good engagement and impactful patient experience work. 

Just as a Medical Director is not there – should not be there – to ‘represent’ his (sic) medics, rather to uphold the essence of high quality, safe, effective, evidence based clinical care – the principles of good treatment, so a Patient Director is not there as some sort of unionist only protecting the interests of one group or individuals over others – we are there for ‘patient-ism’ in all its manifestations, primarily by ensuring a sustainable focus on what matters to people who use or might use our services, as well as wider community interests. 

The model of patient leadership implies creating opportunities at all levels – from peer support, through to improvement and governance roles and should also be about  opening up professional roles to those with lived experience and encouraging and supporting them to apply, by making reasonable adjustments and more - perhaps putting ‘D’ for desirable or even ‘E’ for essential alongside roles like Transformation Manager, or Quality Improvement Coach - making it explicit that a life time living with a limiting condition is equivalent to a degree. 

People tend to assume that patient leadership leads to a narrowing of roles rather than the fact that it leads to the articulation of new ones and the infiltration of lived experience into old ones. 

Patient Leadership is only elitist in the sense that few roles and opportunities are available and investment in building capacity is missing - but this is an indication that it doesn’t really exist yet, rather than a reason for dismissing the concept. It is akin to saying we don’t have power in the system, cannot see it working yet, so let’s keep things the way they are.

More Deeply 

In fact, claiming that the notion is elitist says more about the elitist assumptions one makes - about the term itself and about the health care system - and perhaps dare I say it, about oneself. Maybe the mindsets need to shift?

To criticise the concept based on false assumptions or based on what you think it is (rather than critique something once you get to know it) denies the fact that anyone who has been through stuff knows stuff and could help change stuff. It denies the fact that all of us have the potential to speak truth to power, to engage in dialogue about what matters. It denies the potential of all of us to take charge and have more power.

Blunting Voice?

An alternative challenge is that by systemically embedding people ‘in’ the system, it can lead to blunting of independent voices. I have more sympathy for this argument. But my experience suggest the opposite - it is precisely the lack of power in the system that has led to terrible things at all levels. 

I don’t think the answer to that is by maintaining marginalisation. It is again like saying ‘We don’t have power – but please don’t let us have any so we can continue shouting about how we don’t have power’. Or double locking a child in her room and saying shout louder and I will try harder to hear your cries. That way more scandals lie. 

Patient Leadership by the way does not deny the existence, or need, for people outside the system - groups or activists – to be able to say what they think. The very reverse. But it does – or should – allow for channels of dialogue for difficult discussions to be had - at the heart of the decision making corridors and dark meeting halls. 

It should also lead to a deeper dissection of what we mean by ‘independence’. In psychological terms, we move from being ‘dependent’ to ‘independent’ to maturing as ‘interdependent’. Patient Leadership in this light can be seen as a maturation of patient voice. And I recognise we have a million miles to go before we equalise power in that way. La Lucha Continua. It does not either disallow or disavow ‘anger’ or justifiable ‘rage’. 

We should not let current system leaders ignore angry voices – we would not have had the Mid Staffs inquiry and a hundred others were it not for outrage. But that does not mean we shouldn’t try to re-balance the power inequities that led to the problems in the first place. 

Moreover, Patient Leadership is not an excuse for training patients in talking politely and using words like ‘concern’ ‘appropriate’ ‘unhelpful’ or to help them pack away passion and emotion. The need for ‘hygienic’ discussions about terrible things should be gone. The fear of honesty is more a healthcare system problem than one about patient voice. But patient leadership is about being able to have a proper dialogue that explores what went wrong (or right) in a way that keeps everyone at the table.

Critiques of patient leadership that rest on ‘voice being neutralised’ assume that people aren’t capable of of having those difficult discussions. I believe they are. 

It also assumes that we don’t have the wherewithal to withstand the seduction of office - well, that’s on us. That’s on us to reshape how improvement and governance takes place. That relies us on us to seize the language and discourse and say ‘let’s talk about what matters’ not just out there in focus groups – but here. Here where decisions are made about what to do about things. 

The Diaspora 

Of course there is a risk of co-option and adaptation of the terms to suit current power inequities - as they say ‘tell me about it’. I see programmes for patient leadership that are misguided and adapted for institutional needs. I’ve had ideas stolen so many times and have been shafted so many times you wouldn’t believe. 

But is that then a reason to give up? Or to ditch ideas? Isn’t that more an indication that we need to change things? Isn’t that more an illustration of how co—option of the ideas are happening precisely because we don’t have the power to shape them?

Another reason for this fundamental lack of change is that we don’t have an (Un?)Royal College of Patients - a collective of like-minded souls at a central level. The various charities and patient organisations are not on the whole led by patients - that is itself a serious indictment of the formal ‘patient and consumer movement’ to which the sector needs to respond.

But we are growing anyway informally. Maybe it’s better that way. Maybe the lack of a unified home allows for the concept to grow and infiltration of the system to happen in a million different ways. Perhaps the diffuse nature – our diasporic mind – serves the cause better? I don’t know. 

For me at the moment: It is not the failure of a concept for change that is the problem - it is the LACK of its presence in the system that is - the failure of us to be equal partners at all levels; the lack of systemic investment in building capacity or in creating the right influential roles or opening up roles to those with lived experience. 

Undermining Patient Leadership through making misguided assumptions is, to me is a bit like saying the Suffragette Movement was elite because they only wanted votes for posh women.

Challenge the concept, criticise it if you will - that will help hone the movement. But try not to criticise the concept without first trying to understand it. More deeply, try to be aware of the assumptions one is making about the phrase ‘Patient Leadership’ or the concepts and models arising from it. That in essence is one of the arts of being a good leader – being able to question assumptions.

The movement is fragile. Yes it is very amenable to being co-opted and destroyed at birth. But the charge of ‘elitism’ I fear may say more about those who make the charge than the concept itself. By maintaining that accusation falsely, based on outmoded assumptions, you may be helping bomb base camp before we reach the foothills. 

Michael Seres, a close friend and inspiring Patient Leader, died over the weekend. He was a mensch. I can think of no better words than this chapter about him in 'The Patient Revolution - How we can heal the healthcare system'


You can get sexy knickers and sewage plumbing, but you can’t get something to stop you shitting the bed at night. What if I could give the doctors the information they needed in real time? That’s when my brain got going.

In October 2011, Michael woke up in a hospital bed, covered in shit. Literally.

A bowel transplant had saved his life and he was only the 11th person in the UK to receive one. His cares should have been over. But another phase of his life and career were just beginning.

‘I had a bag attached to my body that was collecting my shit. It was overflowing and I couldn’t do a thing about it.’

The surgeon and other health professionals told him this was normal and he should get used to it. But clinicians don’t have to live with the consequences of a condition or treatment. It is the experience of the everyday that makes the patient leader a bit different: ‘For the docs it was about survival, but the only thing I could think about was this bloody bag attached to my body.’

In hospital, they had to empty the bag and measure its contents. When he eventually went home he had to drain his shit from the bag into a bucket or big bag. He had to get extra sheets for his bed, obtain pastes and sachets to thicken the faeces so it did not leak. Companies were sending him special rucksacks for the bag, bedsheets, sprays, creams, barriers... ‘My head was going, “This is just not normal, why does it need to be like that?” I was having conversations all the time about how much thickener to use.’

‘The transplant was supposed to give me a quiet life.’ His life since then has been anything but. He did his own research and, having a marketing and PR background, was determined to do something about it. He also describes himself as a ‘pain in the arse’ – unwilling to accept the status quo.

He used social media to connect with other patients to find out whether they were having similar problems. It was shocking to find others who suffered this sort of humiliation and discomfort in private: ‘I connected with 20,000 patients. Everyone came back to me and said, “Yes, get used to it,” or, “It’s not that bad.”'

He started questioning things – the default mode for a nascent patient leader: ‘Why does it have to be that way?’ And, fortunately, he had a surgeon who also became curious.

His first entry into the mindset of an entrepreneur though was triggered by his kids and a bout of boredom in hospital.

His family had just visited him on a Sunday afternoon: ‘My kids had wheeled my IV [intravenous] trolley down to the cafe. And had been blowing up surgical gloves and sticking them on a pin board. I was thinking – why did everything to do with hospital care need to be so damn grey and boring? And these stoma bags? We can do better than this. Why can’t you have your football team logo on it or a picture of your boss? You could shit on them. My daughter at that time was into Disney princesses – why can’t we do that?’

Having a business background and being naturally curious, he looked into the options. ‘Patients don’t stop being people when they get ill.’ Then he laughs: ‘But I never thought we would be where we are.’

Michael had spent much of his career in consumer product licensing; in other words, building products and brands for other people. The licensing of Who Wants to be a Millionaire?, wooden toys with kids’ favourite characters, t-shirts and apparel for football tournaments. Michael was always into building new products.

Now, the more serious task was dealing with overflowing faeces. Again, the idea came to him during the boredom and mundanity of dealing with the practical consequences of his lifesaving operation. He was at home, filling in spreadsheets for the doctors about what he had eaten, how much poo had come out and when and emailing them with the data. And by now the problems were not just overflow, but bacterial overgrowth, dehydration and infections.

For doctors and health professionals generally, these ‘invisible’ problems are not what matters. They may deal with the consequences, for example the readmissions and infections, but they don’t see what matters to a person’s daily life and they are not in a position to be able to prevent such things happening. And they don’t deal in shit.

His first idea was to design a Bluetooth sensor alert to check on how fast the bag was filling up: ‘We had to start somewhere. I believed that we could change the bag.’ However, the implications of such a device were enormous. If you could change the way of measuring volume, you could also get better at automatic data collection. And, if you can link that to remote communication with hospitals and professionals, that could avoid readmissions to hospital for dehydration: ‘What if I could give the doctors the information they needed in real time? That’s when my brain got going.’

He was also seeing a private healthcare industry focusing on the wrong things. He had investigated other so-called ‘innovative’ solutions: ‘The NHS will pay a company to plumb a tube from your bag into the sewage pipe so that shit can quietly drain away overnight.’ He then mentions an inspirational entrepreneur who has designed lingerie for people with gut conditions: ‘You can get sexy knickers and sewage plumbing, but you can’t get something to stop you shitting the bed at night.’

At the same time, he was asked to give talks by his transplant team, partly to help identify and recruit other transplant patients, partly as medical education – this seems a common route in for patient leaders (see the chapters on Sibylle Erdmann and Alison Cameron). He had a credible understanding of the system due to his long-term problems. He also was able to provide advice on how to look after oneself through diet and nutrition, and this holistic approach gained credence amongst patients and staff alike. Meanwhile, Michael started blogging about his story and work. He has subsequently used social media to develop global online communities of thousands of patients. His blog has over 100,000 followers.

Michael’s story is an illustration of how healthcare need is almost invariably defined through a professional and institutional lens. And thus there are significant blind spots, often to do with how one lives with a condition. Patients know what matters. But when they came up with solutions, they are easily ignored. Michael’s struggles as an entrepreneur were only just beginning.

Having initially hacked a sensor by purchasing the product online and using video tutorials, Michael quickly realised that scaling a good idea was a massive challenge. He found manufacturing partners willing to build a product. One of his stand-out memories during this period was of 300 units being shipped to an exhibition in Florida. The box arrived and Michael eagerly opened it to find that the batteries had been left on and nothing worked. Now a battery ‘pull tab’ seems obvious.

Michael won some awards. Tech London Advocates awarded him ‘new innovation of the year’ and the Science Museum featured his device as part of a Patients as Innovators exhibition.

By now, Michael was starting to ask more fundamental questions: he wanted to know who made decisions about whether the NHS would pay for his product. This opened his eyes to the NHS and its opaque decision-making systems, codes and behaviours. And the huge barriers it puts up to innovation, particularly ideas that come from outside the system. He drew on his professional interest in legal and marketing issues to start shining a light on the fusty world of innovation, regulation and licensing. It wasn’t a pretty sight.

‘What became very clear very early on was that nobody was going to pay for my product in the UK.’ He launches into the story of how he tried to get the NHS to support him in getting his product into the market and how it might be covered by the NHS. He discovered the ‘drug tariff ’ – a list of treatments and procedures that the NHS would pay for. And he tried to get his product listed. Eighteen weary, bureaucratically inept months later, he was still trying: ‘I saw all the other stuff they pay for, and thought, “Why not mine?”’

At first, there had been a Word document on a website to fill in. So he filled it in. Three months later, he got a note back saying, ‘Where is your health economics model?’ He then went back and said that the form had not asked for that and he didn’t even know what a health economics model looked like. He went back and learned about that and hired some people to help him do one. They built the product, put it on 80 patients, looked at the benefits and delivered the findings – and of course he had to raise the finance for all this. They showed a 30% reduction in costs in terms of drug spend and reduced hospital admissions. He waited for the drug tariff team to get back to him. And waited. And waited. He heard nothing for another six months.

They finally replied and said they now needed a clinical evaluation. He had assumed that this was part of what he had already done. So, yet again, he went back and did what they had asked, bringing in his clinical team to help. This demonstrated the benefits again and looked at how many people would use it and how it could be used in a clinical environment. And again it came from his own money. And another year went by.

Things were beginning to get on his nerves: ‘They made it very clear that you can’t talk to them; everything has to be done on email. This was bullshit. I was getting nowhere and being fobbed off.’ Like most patient leaders entering the world of healthcare policy, he was up against systematic barriers to inclusion.

For many – particularly when it affects one’s health (again) – this is the point at which people wave the white flag. Michael tried another tack. He challenged the tariff itself and questioned its relevance: ‘I said, “I don’t understand; you’ve got loads of stuff on the tariff.” And no one would give me a straight answer.’

At this stage, Michael was relying on the generosity of an initial investor who believed in what he was doing. The investor, a pharmacist, understood the challenges Michael was trying to solve. It was his initial money that allowed him to take a handmade hack and turn it into a viable product. With that seed money he started to navigate the regulatory landscape and began to see the gulf between the UK and US systems. And he was about to get a dose of the UK system.

He was told there was a ‘special way’ in which products like this might go on what was then called an ‘innovation tariff ’. NHS England, an emerging quango at that stage, told him that his sort of product was ‘exactly’ what the system was looking for.

He was encouraged to apply for a new initiative called ‘NHS Innovators’ as an entrepreneur who would then get support. But again this was a dead end. He didn’t get on to the programme. The goalposts shifted yet again. He was then told he didn’t have to get on to this programme for his product to be regarded as ripe for the tariff. But his hopes were dashed once more, and his product was not listed on the new tariff after all.

‘On the new list were episiotomy scissors, walk-in clinics and other stuff. I said, “What’s going on?”, and they said, “Sorry, we screwed it up. Could you help us rewrite the tariff? We’d love your input.”’ At this point in the interview, he leans back and rolls his eyes.

He was now experiencing another side of the patient leadership game – being asked to contribute his expertise for free: ‘I gave them all the information about what we were doing and our experience in the US, as we had started production there. They sucked my brains. I was told to apply again last year and then got another rejection, as it did not fit with key priorities. I said fuck it and forget it.’

Other patient leaders, faced with such problems, have little energy left to make their mark. Or are so isolated and ill, they give up. Such talent wasted. This at a time when the NHS is desperate for new ideas.

I ask Michael about what he has learned: ‘In the UK, all innovation is clinician driven, professionally driven; the role of the patient is not seen as useful. We are not valued in that way. The penny dropped only recently. Put aside for a moment that we are financially bankrupt; it is shambolic how we are trying to scale up technology. The system only trusts health professionals.’

He has all but given up on the UK. ‘I can’t be bothered any more. I spent £80,000 on clinical trials in eight places in the UK, knowing that patients won’t be able to get it on the NHS.’

He refers to the complex architecture put in place recently in the health academic and research world – where new acronyms have to be learned, the world of AHSNs (Academic Health Science Networks), CLAHRCs (Collaborations for Leadership in Applied Health Research and Care) and NHS innovation and so-called entrepreneurs. ‘They are stuffed full of “clinical champions”. But there are no “patient entrepreneurs”.’

He apologises: ‘Sorry for getting too passionate. It is fine for me because I now have my own company and I am ballsy. I will get the meetings with high-up folk – I will share the story – but I will not be able to scale something up because I am not clinical. This is a perfect example of the old world colliding with the new world.’

Michael founded 11 Health (11 is a special number, because of Michael being the 11th person in the UK to have bowel transplant surgery). And he has had to leave this country in order to succeed. He turned to the US for funding after being turned down in the UK 43 times. He found a US investor – ‘a legend in Silicon Valley’ – who has subsequently become his mentor and friend. ‘That initial money came with two caveats: 1. Don’t run your company like a British company; 2. You have to move to the US.’

That is exactly what Michael did. Starting with one desk in a co-working space, Michael has now built a team of 35 based in Southern California. He has turned the original sensor into the world’s first smart care platform for stoma patients, which includes the first ever smart bag.

‘Now technology can help manage the shit and we can learn from what comes out of the body and exactly what to put back in. The company doesn’t see distribution of its product as something that should be any different to other consumer items. We will ship your medical supplies in the same way as anything else.’

At a strategic level: ‘My job is simple. Surround myself with brilliant people who are far cleverer than me and steer the ship.’

However, this is not just about technology. Michael’s greatest passions have always been helping others and how patients can help other patients. This has been boosted by his own experiences, where family and friends were the sole support – ‘the unsung heroes’ – and another ‘care gap’. He noted that patients as peer support workers are a hugely undervalued resource.

At 11 Health, they coach patients to buddy other patients and measure the outcomes.

He has utilised his understanding around peer support to found a business model for delivery of his products: ‘We have changed the way we deliver the service. We have 15 patient champions who have stomas, who have not been able to get back to work. They can work for us, for an hour, part time or full time. They go into a hospital and they link up with other patients, not to sell the product, but to see if they can help. The app we produce is full of educational resources.’

It is not a patient takeover. This is collaborative work. The doctors are engaged too: ‘We have doctors phoning us up to ask for help and to find a patient they can bring in to talk to their own patients about how to live post-operatively with a transplant.’

Meanwhile, Michael has harsh words for what happens in the UK. While he is treated almost like a celebrity when he walks on to a national event stage, nothing has changed behind the scenes. ‘The NHS continues to spout its empty rhetoric about “patients being at the centre” and about being at the forefront of innovation.’

‘I started looking at all the research and innovation coming through and there was another app announced recently about waiting times... They are all clinician driven, all insider driven, and I have this naive belief about patient centricity.’ He pauses: ‘It’s bullshit. It may be kicking off in terms of a few old-fashioned patient groups in GP surgeries or low-level engagement in hospitals, but there is no real power in the system.’

He mentions the role I have currently, as a patient director. In fact, Michael was the first person I met who had the idea of patients as chief executives. ‘Nobody is acting on it. There should be a patient CEO in every healthcare organisation. Until that happens, this movement cannot flourish. Everybody goes, “Yes, lovely idea,” and then nobody does anything.’

As someone who has had mental health problems and is interested in the emotional effects of physical health problems, I ask him about how he keeps his mind healthy. ‘There is zero understanding of mental effects of long-term physical health problems. If you have trauma, there will be inevitable one-off mental health issues to deal with. But if you are living with chronic complex conditions where there is no chance of “getting better”, that is a huge psychological consequence and it never gets addressed. Everyone repeats, “Are you OK?”, but nothing follows... My mind and gut are totally related but they are never treated together.’

Once again, he points out the love and support he has had: ‘I am lucky I have family and work as therapy and my escape. I look at those who do not have those other outlets or those who choose not to have those outlets; I see cases spiralling out of control.’

This is not just a personal issue; it also has huge implications for the prevention and integration agenda. He tells me about people who have had transplants coming in again because they have not been able to deal with the problems that led to them needing a transplant the first time. ‘There are two patients in hospital, one on kidney and bowel transplant, none of their issues have been addressed – drug abuse, unstable home environment, living conditions.’ Once again, it is patients who see the impact of siloed working at first hand, can point out its effects, could help come up with solutions.

Michael seems to have become a bit of a celebrity in some circles, often giving international presentations and being invited onto expert committees; he is a published author and a professional speaker. He is the inaugural e-patient in residence and an executive board member at Stanford Medicine X. He has helped implement the first Skype clinics in the Oxford University Hospitals Trust and is an ambassador to the prestigious Doctors 2.0 conference.

But his feet remain firmly grounded. And he still speaks truth to power. ‘For all the US health system dysfunction, they have recognised our innovations. In the UK, it is all about who holds power.’

‘We [patients] have as many qualifications, as much knowledge, as many professional qualities, just a different set of skills; for healthcare to move forward properly, everyone has to have a seat around the table, at equal level.’

He qualifies this slightly: ‘I don’t want to be around the table because I am “just” a patient; it is because I am also Michael Seres. I want them to say, “He also runs a business, understands strategy and budgeting, can contribute in the same way.”’

In other words, how he sees things is different but equal, like all others in this book. We are no better and no worse than a surgeon or a nurse, a financial manager or an IT worker. But the value must be equal. As he puts it, ‘I am not fighting for “us” above them, only for a level playing field.’

He sees a few, but not many, similar entrepreneurs and is pained by their struggles – he mentions Denise Stephens, founder of Enabled by Design, in particular as a ‘hero’. But he sees few examples of patient-led companies, though he makes an exception for PatientsLikeMe – a space for online patient groups that was set up in response to the personal experiences of its founder.

Unsurprisingly, he already has eyes on the next step: ‘If I have the time and the money, we could bring together a patient resource. I want a patient CEO in every healthcare organisation. And I want my company to start an incubator for patients as entrepreneurs.’

I delve backwards as well as forwards. What in his background has made him the way he is? He was diagnosed with the incurable bowel condition, Crohn’s disease, at the age of 12. It was only following over 20 operations and an intestinal failure that he had the transplant. Michael has also been a cancer patient (twice) due to his lowered immune system, a result of drug side effects.

‘My healthcare journey is relatively unremarkable, because every one of us has a story.’ I am well versed in Michael’s humility. We have been friends for a long time now.

His diagnosis of Crohn’s disease followed two years of being told he was faking his stomach aches: ‘An irony, because I wanted to go to school. I was good at sports; it was all I wanted to do. I was one of the youngest cricket captains they had, played for Middlesex schools, captain of Camden schools, rugby scrum half.’

Back then Crohn’s disease was a rare thing; now, IBD (irritable bowel disease) is well known. It was often treated with high-dose steroids. Not pretty for a kid. He was a ‘geeky, awkward teen’, but now had to deal with a bloated face, rashes and extra bad moods. He needed surgery at 14, and when he came back to his school in north London, he had his first real taste of discrimination. Why was the seat next to him at assembly left empty? It seemed the staff felt his disease was contagious.

Do patient leaders have an inbuilt sense of the unfairness and injustice of life? Is it intertwined with their personality or their journey? Their family life or their healthcare experience? ‘I always had a mouth on me but I was basically a good kid – compliant.’ But that critical mind was there from the off: ‘I could challenge and question and found my voice on the cricket field.’

His teen years were littered with health problems: ‘They knew me at the Royal Free. “What are you here for this time?” the receptionist would ask. I was the one who emerged from the scrum with a broken wrist... I didn’t know then that Crohn’s could affect bone density. We always thought it was sporting accidents. I was diagnosed with ankylosing spondylitis, was in a lot of discomfort – it became a joke. I spent a year on crutches with ligament pain.’

Frustrated by his school’s attitude and losing out on learning through his breaks in hospital, he went to a tutorial college, Albany College, to make up for his missed O levels. And there he found the sort of support, enthusiasm and encouragement that had been missing from his schooling thus far.

Michael is big on support. He weaves that message through everything he says. And Albany College offered him everything he needed to take his frustrated, opinionated, curious mind that step further. ‘The amazing English teacher came to teach me at the bedside in hospital.’

But that didn’t mean he agreed with anyone. ‘I loved the debate, the intellectual jousting, and of course, because of what I had been through, I wasn’t always willing to back down... I had two brilliant teachers for law and politics who left their mark – in the case of politics, their left-wing mark! I always took the opposite view. I also enjoyed the case law; health was always a big thing – we talked about the NHS, constitutional and social welfare stuff. I was fascinated by inequalities.’

He also had an eye for business that would help later on. His family was in the ‘schmutter business’. His father, a second-generation East End Jew with Russian roots, was a clothing manufacturer and Michael spent his summers helping out at a bristle factory owned by his grandfather on his mum’s side. ‘Only a handful of my grandparents’ family survived the holocaust.’ He pauses. ‘Summer was great. It was time with grandpa, with dad. I enjoyed the business background on both sides of the family – going to the factory. It always led to Blooms [the famous Jewish salt-beef sandwich makers]. I remember the buildings and people vividly. One aunt was a designer, the other did the books; it was a real family business – loved it.’

So, perhaps he had talents to fall back on? Perhaps his curious mind and professional interests made him ripe to re-enter the healthcare world with a whizz. He certainly had the support, which is crucial for most of us. Even so, what he did was and is remarkable.

Like me, he was a good sportsman at school. Like me, he supports a rubbish football team with a decent pedigree: ‘My cousin took me to see Queens Park Rangers at Loftus Road in the early 1970s when I was six and we lost to Liverpool in the league by a point. I am still waiting to see us win a trophy.’ Maybe our frustration comes out in our work!

Having listened to his story for a couple of hours, I ask him the question that haunts me: why bother? ‘Because we care and because it’s not right, and I think we do it because there is a bit of activism in us, I think we all have a commonality to different levels, a feistiness, a cause, a belief in trying to right an injustice in a way.’

He has a final thought: ‘Patient leaders have to deal with their own conditions, they have to be extra good to break into and change the system and they have to be as good a leader as those who are in the system – we need to be three times as good as those who have been brought up culturally entitled to a leadership position. We have to be three times as good to be treated as an equal.’

Rather than reinforcing our reverence for the heroic – our regression to applauding the tough guys who sweat it out on the frontline – this virus might serve to amplify our common vulnerability, fallibility and suffering. But also the jewels of wisdom and insight that are dug from the caves of suffering. Lockdown can unlock our human potential.

In many senses, this crisis is a societal macrocosm of the individual lived experience of being affected by life-changing illness, injury or disability.

That is not to say that this virus has equalised humanity. It hits the poorest hardest and exacerbates inequality.

But those of us who have been banging on about patient leadership or ‘lived experience’ or ‘experts by experience’ know that, along with the pain of suffering and loss of identity and purpose, comes a deep knowledge of what matters in our lives, the primacy of relationships, and vision of what good care and treatment looks like.

On the one hand, those people living with long term conditions are suffering hardest as a consequence of Covid. And are also affected disproportionally by societal measures to contain it. But, paradoxically, many are well-used to isolation, marginalisation, lack of agency and connectedness that others are feeling for the first time. A few people with mental health problems – a minority it should be stressed – have even reported feeling that their symptoms have been alleviated.

We know what this is like – we know what being alone feels like, the fear always in our heads, uncertainty, loss, dependency, guilt, helplessness. Welcome to our territory.

So, it is ironic that our expertise is again being marginalised.

On the one hand, it is understandable that the urgent trumps the important. Patient and public engagement, like its close cousin, diversity and inequality work is seen as dispensable at times like these. Crisis-driven management changes means that national, regional and local policy making in health and social care has been bereft of patient, user, carer and citizen input.

I worry that patient leadership as a whole has taken a backward step. I worry that it might be dying, or dead. I see no evidence of patient leadership at any level of strategic or operational decision-making during this pandemic.

However, the cautious optimist in me welcomes some countervailing trends. Firstly, that community connectedness has risen visibly to the fore. I don’t need to rehearse the ways in which this is happening. It is obvious to us all.

Secondly, patient-professional interactions are changing. This is partly the result of the shift to virtual consultations in primary care and some parts of secondary care. I have spoken to several clinicians over the last week or so, and several of them report intriguing shifts in the dynamics of these sorts of encounters. One stated that the relationship “has become more equal. They see me in my home, and may feel more comfortable. I have to change my way of using language and, in some ways, things have become more patient-centred, with us agreeing that who does what needs changing”.

May this ‘disruptive innovation’ be sustained! I know one GP who is talking to his practice about this, and is very mindful that not all patients are IT-literate. He is hopeful.

Thirdly, there is a cadre of health professionals whose lived experiences are valuable and needed more than ever right now. Professions and professionals should take stock of what they have learned and how suffering augments their expertise. And here I am thinking of the work of Natalie Kemp and others who have founded In2gr8mh.

Fourthly, the activating of peer support networks in mental health trusts shows just how integral this emerging work force is for the future. My amazing friends at Sussex Partnership Foundation Trust are leading the way!

The secret will be to connect these things together, so as to create a ladder of opportunities (alongside learning and support at each stage) for people to lead - from leading their own care, to supporting others as peers, then on to collaborative leadership roles in improvement and governance. This ‘Patient Leadership Ladder’ will help embed an infrastructure that is critical to a sustainable engagement model and the well-being of healthcare systems.

Meanwhile, there is a further struggle just to get back to where we were before this crisis. There has been a justifiable centralising of the NHS that lends itself to command and control styles of leadership and a reinforcement of existing power structures (doctors, hospitals, big pharma). But we cannot allow that approach to be locked in while we are locked down.

We need soon to re-inject patient leadership into policy and practice – now more than ever, we should have learned that valuing wisdom and insight gleaned from the caves of suffering is the key to NHS decision-making. Without that, we will lurch from one crisis to another.

Onwards.

(With particular thanks to Richard Pemberton, Natalie Kemp, Simon Mudie, Jo Hemmingfield and GIles Hazan).

If you liked this blog, you might also like this one: Valuing What We Bring - an open letter to NHS England

(C) 2020 David Gilbert

David is author of The Patient Revolution - how we can heal the healthcare system and his first full poetry collection The Rare Bird Recovery Protocol is now available from Cinnamon Press.  

The Patient and Public Engagement industry has been sidetracked.

For many years, patients, users and carers have been led to believe that their voice matters. And that by taking part in focus groups, telling emotional stories at conferences and being a ‘representative’ they will make a difference and that this translates to being ‘at the centre of the NHS’.

I have long argued that these transactional engagement approaches are outmoded, preserve the status quo and buffer us from power. See for example this article 

At the HSJ Summit on Mental Health, I was reminded of two further things. Firstly, that you need to sell your work as relevant – “if the next government believes in choice rather than rights around mental health, use the argument of choice… you can sell the same thing”. Secondly, speaker after speaker said it was workforce issues that kept them up at night.

So, we need to sell co-production as a workforce issue.

Of course, it is other things too. It improves outcomes and experience. It helps with improvement and transformation. It shifts power (don’t shout too much about that one, sneak it in).

How is co-production a workforce issue?

Well, firstly, there are three embedded models of co-production doing the rounds that I rather like. One of course is our Sussex Model of Patient Partnership, based on a triangular dynamic between the role of a Patient Director (critical I think), pool of Patient/User/Carer Partners involved in improvement and governance and a Patient and Carer Forum with formal oversight for patient experience and engagement work as well as other things.

The second one is outlined in the book, The Patient Revolution. Karen Owen’s chapter on HealthMakers describes a model whereby people who have been self-managing their own condition (of whatever sort) can become peer support workers and then enter the strategic realm should they wish.

Meanwhile, in mental health, the rise of peer support work as an acknowledged paid role (albeit often poorly paid) offers rich opportunities. For example, Central and North West London (CNWL) Foundation Trust is putting in place an integrated approach and thinking through how already embedded peer worker skills can be extended so that people take on other roles (coordinated by Melanie Anne Ball, their Trust-wide Peer Support Lead) (@melanieanneball).

What all these have in common are:

Peer support helps deliver services. Patient Partners involved in improvement and governance helps drive change. These two elements need to link up.

I would propose that every health and social care organisation looks at these three models. And with the help of people like us (Lived Experience Practitioners, Experts by Experience, Patient Leaders – call us what you will) develop integrated approaches to co-production.

But here’s the crunch: Workforce shortages and resource pressures mean that co-production could really help.

I am not advocating for cheap peer support to displace roles that should be done by others. I am arguing that at each stage along this new ‘career pathway’, this work can help….

  1. By designing better and more coherent self-management programmes, co-facilitated and driven by Patient Leaders, etc. This would stop attrition rates in professionally designed and driven programmes, and have long-term consequences for well-being.
  2. By having a high quality peer-support workforce (able to offer ‘health coaching’ skills and/or signposting to well-being functions) this obviously helps improve outcomes and experiences.
  3. By developing improvement roles so that patients become, for example QI partners and improvement advisers, we would better target and implement co-designed interventions. They would better focus on what matters.
  4. By having patient leaders in governance roles, there would be enhanced accountability and better quality decision making.
  5. By having a Patient Director role, the work above would be co-ordinated and would actually happen.All this would help improve outcomes and people’s experiences as well as have deeper effects on quality of decisions and delivery. This work helps staff.

Another benefit of true co-production (that I have seen time and time again) is that staff morale lifts and through the presence of patient/user work, staff become re-connected to the passion and values that brought them into the work in the first place. This work rehumanises healthcare. This work helps staff.

Good engagement impacts upon staff engagement and staff well-being. This might have – a hunch, but a strong one – a significant impact on recruitment and retention. This work helps staff.

Bureaucracy and the chasing of frenzied regulatory targets reduces – this is also a hunch at the moment, but I am seeing it happen in a few places – patients in more control of decision making ensures a focus on measuring and working on what matters. We need to reinvigorate the workforce with a cultural transformation that focuses on what matters. This work helps staff.

And if this happens in commissioning and regulation, at policy and practice level, we have a true patient revolution on our hands. This work helps staff. It transforms cultures in ways that all the empty rhetoric at well-meaning conferences fails to do - because the same old tired people are in charge (I mean well, some of them are very good!).

This work helps the chief executive. Our dream of patient leadership turned into everyday practice might allow a chief executive to be released from their nightmares. Remember, they come to work because they care too.

Co-production is a workforce issue.

 

—-

 

© 2019 David Gilbert

 

If you liked this blog, please read more at www.futurepatientblog.com

 

And follow me on Twitter @DavidGilbert43

 

 

 

 

 

 

 

 

We have nine paid and supported Patient and Carer Partners (PCP) at Sussex MSK Partnership (Central). This, in addition to bespoke engagement work and gathering and learning from patient experience data.

Yesterday, I spoke to one of the nine: “I was in the waiting room – was I a patient or a patient-partner? I was now thinking about improvements that can be made. I then went with a friend to another hospital where we seemed powerless and told him about the patient and carer partner role… he was fascinated”.

I suggested she write a blog and that this is used to discuss the role at our next meeting. We also talked about her re-using her extraordinary research brain to look into availability of acupuncture in the NHS and locally – partly as a way of developing relationships with our clinicians and partly as a way of gaining system knowledge and thinking through local and national practice.

I suggested to another PCP that she becomes a mentor for a health professional. “That’s turning the tables, isn’t it?” she said. She has been taking part in observations of clinics and assessing the quality of shared decision making, alongside other PCPs and peer-clinician observers.

The project has been so successful, we will probably roll it out into other clinics, and maybe revise the assessment process and measurement tool so as to be more patient-centred. The other day, the lead clinician for the upper limb team, the extraordinary Helen Patten, agreed to patient-centred observations being on a level-playing field to peer-observation for appraisal purposes.

As a result of this project, this particular PCP has struck up a close relationship with the clinician she observed who had found the patient-centred observation uniquely valuable. “Patients as mentors of clinicians as the next step....?” she paused: “Why not?”

Another PCP has been invited by a clinical lead to participate in work on staff inclusion, beginning by looking at experiences of BAME professionals. I am going to ask this PCP whether that experience can be widened to look at patient inclusion. This will expand on last year’s work on accessibility and information provision.

Meanwhile, another PCP is going to help us analyse qualitative data from our patient survey and join a project on improving our appointment letters.

Another more experienced PCP is closely involved in the roll-out of local plans for advanced practitioners to be ‘First Contact Practitioners’ in GP practices. This has taken her deep into plans around work-force and quality assurance. These are issues she is actually more qualified than most to take part in, given her professional background, as well as her personal experiences of care.

Thus, PCPs are beginning to develop their own portfolio of work. This portfolio builds on their ‘frozen assets’ (expertise from a former life before illness) plus the ‘jewels of wisdom’ from the caves of suffering (expertise from patient-hood, including leading with vulnerability, awareness of power and trusts issues, primacy of healing relationships). These are things we discuss in the book ‘The Patient Revolution’.

The PCPs are also developing a set of collective priorities. These are likely to include a closer focus on pain services and physio and a patient-led project on ‘coordination and consistency’ across pathways.

Once these individual and collective priorities are decided upon in early 2020, we will co-design a learning and support programme that focuses on ‘core skills’ (e.g. bridging personal experience for strategic gain; communication and relational skills) and ‘context-specific’ skills (e.g. how to move from being an ‘improvement partner’ to ‘governance committee role’).

The vision is for PCPs to develop a ‘career-pathway’ – from judicious use of own experience narratives (i.e. in learning and education) through being ‘improvement partner’ through to ‘governance advisor’. NB. We now have PCPs on two MDTs (upper-limb and lower-limb) and will expand that to four MDTs (pain, physio) in 2020.

Of course, this ‘pathway’ can go the reverse-route, and encompass other roles, such as on recruitment panels, undertaking research, being a mentor or moving into peer-support. 

The benefits of our work are becoming visible – our recent CQC ‘outstanding’ report included specific praise for our model of Patient Partnership. More importantly, we have seen changes in policy and practice, improved self-management programmes, changes to shared decision making approaches, improved access to clinics, better user experiences in waiting rooms, etc etc.

But the most satisfying thing for me is, I do not need to sell the work. Staff are coming to us. That shows how far we have come.

Last week, one of our PCPs hosted a celebration event for the CQC ‘outstanding’ assessment. Next week, two of them will meet with Simon Stevens in order to demonstrate that social enterprises should stay included on procurement frameworks.

But aside from the posh stuff, three PCPs will be expert panellists at a phsyio learning day – the keynote morning presentation in front of about 100 local practitioners and admin staff.

As one of our newer recruits to the role of PCP said: “I am not used to being encouraged to delve into my experiences of having a long-term condition in a positive way and people wanting me bring that to the table. I am slowly coming to terms with the fact this is not a job-job, in the sense that I have X hours a week to do Y. That we can influence things and find ways to match our passions with the needs of the organisation. And vice-versa.”

It’s not a job-job. It’s a ‘rock and roll-role’.

© 2019 David Gilbert

If you liked this blog, you can find others at www.futurepatientblog.com

The Patient Revolution – how we can heal healthcare’ is published by Jessica Kingsley Publishers.

 

 

 

The stories we tell ourselves, particularly those about ourselves can become fixed. Often almost invisible and deeply held. Only surfaced when we react to something that triggers them.

I have always under-valued myself. And notice a queasiness when others seem not to value me, or when I see others under-valuing themselves. No wonder I am in the patient leadership business.

But we have to rewrite those scripts. That starts by noticing how we play along - when we withdraw (fester and sulk). Or turn aggressive.

After becoming a Patient Director and writing a book, some things have changed. I am more assured about what I have to say. And people say nice things, which is, er, nice. You would have thought I have stopped listening to the insecure bits of me - fat chance! That is a lifelong struggle.

But...

Yesterday, I was doing an evaluation and for the third time, the person who I wanted to speak to did not answer the phone. He had given no advance warning again, and offered no apology. Then I got a text this morning, saying he could speak this morning. I checked with others as to how to respond and said no. I asked him to write his responses down and send them to me. I said to myself that my time was as valuable (even as a ‘lowly’ evaluator) as his.

This morning, I was on the phone to an international patient leader who totally understood my need to value myself. We got on famously and agreed that, if she was to pick my brains further, she would not want to suck them for free – she knew what that was like. She may bring back some money and resources, she may not. But it sometimes seems that only fellow patient leaders get this need to be valued properly.

This afternoon, after waiting to meet a ‘quite important person’ and having finally got the slot into my diary, she emailed and said sorry because she was meeting another big wig and this had to before xmas. I summoned up the courage to write an email back and say, in effect, ‘hey, I am important too’.

This time because it was a health professional, it reminded me of doctors not having time to ‘fit me in’. It also reminded me perhaps of another story I hold – that we patient leaders are not as important as ‘professional leaders’. Of course, my story may not be ‘true’, but it feels so. The best I can do not to collude with telling myself the old story is to stop being an actor within it. That is why I wrote back.

Meanwhile, back at Sussex in the (part-time) day job, our amazing Patient Partners are rolling their sleeves up a bit too. One of our gang has summoned up the courage to remind the local power-brokers beyond our service that she is astute in things beyond her ‘patienthood’ and is now entering some in-depth conversations in the STP arena around quality assurance and competency frameworks, stuff she knows more about than them.

These are small moments, but I have taken the time to process them (also critical in the non-stop world we live in). They remind me of my recovery many years ago from being in the depths – that it is small behavioural steps that slowly shift our self-thoughts. Thinking and feeling lag behind behaviours. It is uncomfortable to break old habits.

I am waiting for the reply to my email with trepidation – also a habit of mind. So, let us reframe that too – I am waiting with hope of a good outcome. And trusting that the doctor will recognise the courage it took to make that honest challenge.

Good luck with it. Be gentle with yourself, but a tiny bit tougher with others.

p.s. The response to my email to the doc has come back - she has been refreshingly honest too. No change of mind, but a transparent response. And she says she admires me for my truth-telling. Adult-adult. Respect!

 

© 2019 David Gilbert

If you liked this blog, do read more at www.futurepatientblog.com

 

 

 

 

 

 

 

 

 

 

 

 

 

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

David

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

If you liked this blog post, you can read many more at www.futurepatientblog.com

The doctors were kind to me. They did the right tests, I assume. They explained things as best they could. They told me what would happen. And they seemed to provide effective treatment.

The phlebotomists, healthcare assistants and nurses were great. I saw moments of love and courage on the ward that will stay with me (amongst patients and carers too, of course).

The ward environment was hard to take – the smells, light and noise in particular. The lack of privacy found me at one stage unwittingly eavesdropping on conversations I had no right (or inclination) to hear – the breaking of awful news, the ‘mobilisation’ of a man in agonising pain, the indignities of humans in naff pyjamas almost making the toilet.

All this is common place. All the surveys in the world show this sort of stuff.

But here is where the light does not shine.

1.

On my first day of admission to hospital, I had a CT scan. It showed something “weird” and they said they would provide ‘conservative management’ (with a small ‘c’ thank god). It was either a ‘diverticular abscess’ or “something more serious”. It was not a great moment in my life. They put me on enough fluids to flood a city and took my temperature down with intravenous antibiotics. I asked them what food I should eat. They said ‘soft’. That was the extent of the dietary advice I had while in hospital. My menu options were chick pea curry, chilli con carne or white fish. I went to Costa and had yoghurts most nights. For all I know, I could have been making my condition worse.

2.

I got used to assuming that I had the gut abscess and seeing my temperature decrease and my energy return a little. On the third morning a different consultant on the ward round hesitated at the computer screen on his wheeled trolley and scanned the scan. From the way he was looking, I assumed it must have been the first time he had seen it. He felt my belly and announced that I might need a ‘biopsy’. I have no idea whether he read my notes. I was back to black. All week (and a bit still) I yo-yo’d between optimism and catastrophising.

3.

Meanwhile, back on the ward: In the next bed, was a young Albanian man who had broken his ankles while jumping off a falling ladder. He spoke no English. During the morning ward handover, while the nurses were otherwise occupied, an anaesthetist strode into the ward. He paused at the lad’s bed and spoke LOUDLY and s-l-o-o-o-w-l-y to him: “You have to have an operation now. Please sign this form”. The lead nurse appeared and pulled him angrily from the ward. He came back later, and with the help of google translate, ‘consented’ (is this now a word?) him to surgery. He seemed in a rush. The clinic was ready, and things had to happen now.

4.

After I got out of the hospital I went for a second scan. This was to see whether the ‘mass’ had reduced and to see if it was an abscess or a tumour (or again try to). The results were due on Friday 9th August. I rang on Tuesday 13th. The secretary said the consultant was on holiday. She apologised and said she would “write an email to the managers” and find another doctor who could do the report. I told her that I needed results before I re-booked a holiday and tackled the insurance company for cover. I rang again last Friday and was told today another doctor would be in touch by the end of this week. I will be away – damn it, I thought, I am going anyway – when the original doc gets back.

Join The Dots

Or join the docs.

The examples above are simple. And not easy to solve I guess. It’s about ‘joining the docs’ – to each other, to nurses, to wards, to interpreters, to dieticians, to medical secretaries. And making sure that the information goes along those dotted lines to make them complete lines of communication. Both ways. And with patients and carers.

My issue is co-ordination. Consistency. Call it ‘integration’ if you want (though the posh wonks and policy big boys have pinched that one for their highfalutin strategic plans that will not solve much IMO). Maybe we could get these simple things right before we try to be too grandiose.

Of course it is not just docs. What about the gaps between health and social care; one ward and another; one hospital and another; commissioner and provider, etc?

One theme that runs throughout my forthcoming book ‘The Patient Revolution’, in terms of the gripes patients have, is co-ordination and consistency.

In the book, we argue that these sorts of issues will only be rectified when patients have true power as equal partners in decision-making. We have skin in the game – nobody else in a healthcare organisation has the real nous and keen focus on the ‘gaps’ in care to do it. We could ‘bang heads together’, or in less confrontational language could help be the glue. After all, we all want to be ‘patient-centred’ don’t we? Shouldn’t that be the vision for any partnership?

Without patients in the room – and, more importantly with a seat at the leadership tables - pathways may be redesigned, but they will remain disjointed, cracked and crooked.

Isn’t it time we all joined together in order to join it all together?

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‘The Patient Revolution - how we can heal the healthcare system’ by David Gilbert is published by Jessica Kingsley Publishers. It is available on the 19th September and is available for pre-order now. https://www.amazon.co.uk/Patient-Revolution-Heal-Healthcare-System/dp/1785925385
© 2019 David Gilbert

I was asked to write a few hundred words for the publishers about why I wrote the book. This came in a summery and summary gush....

Because I am so weary of service users, patients, carers and citizens being powerless. Because I live alongside, work with and love the diamond-studded folk that surround me. I see kindness, passion, wisdom and insight in those they call ‘broken’.

And I have seen our efforts and energies wasted time and time again – I have cried in toilets with bitterness, and know many others who have too. I have spent hours on the phone with people who have been ‘served up’ to focus groups, committees and events, in order either to be patronised, marginalised or insulted.

I know dozens of friends who have to take days off because they relapse after turning up to events, seminars and whatever and having to doff the cap and who are repeatedly stripped of their right to be equals.

For me, the people I want to celebrate are those without the privileged entitlement of current leaders. I dislike the way the NHS sustains the status quo on many many levels – often insidious or almost invisible. Through its structures, polices, and the very language and discourse it depends upon.

But these people we celebrate in the book are the type of people who deserve to be leading the system. However, they lack the support, the opportunities, and are seldom afforded the value they deserve.

My writing is a fortunate gift. So, it feels natural to use words to try to light the way.

This book has been brewing ever since I found myself in a locked psych ward alongside damaged inmates. Alongside Lesley-Anne, paralysed from the neck down after jumping off a balcony because her dad died, who got me to play the guitar for her one evening. It was the first time for a long time that I felt I had anything to give.

She had wanted to be a beautician, she could see what was good and bad about the NHS, could tell how the ward could be less scary, which nurses were kind, why the meds trolley needed its squeaky wheels oiled – from the little big things, to the vast swathes of improvement needed. We ignore people like Lesley-Anne at our peril. She died. I will not let her ideas die. She got me back on the road to giving…

Over the last few years, I have witnessed a groundswell of people like us. We need a stronger collective voice, and we need to build opportunities to equalise power.

I have also witnessed staff wanting to reach out, who are tired of tick-box approaches to ‘patient and public engagement’ – we all want new ways to come together, to be round the table, to hold difficult conversations in a safe way. I write the book because we need each other – we need difference (the grit) and partnership (the balm).

I see staff groping for solutions to problems, but unclear how to change things. I know patients can help. I have seen it time and time again.

For all these reasons – personal and professional, creative and logical, individual and collective, for patients, carers and for staff, for the future of the NHS, for a way forward that seeks solutions rather than builds on the volatility, polarisation and negativity that poisons us slowly and is becoming systematic… and as I get older, all I want is what I have always wanted… to help make things better.

I am also at a point where I have sufficient professional confidence and credibility to believe we are reasonably on track with our analyses of what is wrong. I get a feeling we are saying the same thing, across all these chapters. And that our diverse paths are charting similar territories.

Finally, I am proud of how we have written this book, trying to practice what we preach, talking to each other and listening to each other about how the chapters should be written, and what messages we want to articulate. How we do things (kindly) is as much at stake as the purpose. Come to think of it, kindness is the purpose. What else is there?

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The Patient Revolution – how we can heal healthcare, published by Jessica Kingsley Publishers is out on September 2019. There will be a launch event in October, which will be live-streamed.

You can order the book now here

If you liked this blog, please check out others at www.futurepatientblog.com

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