Co-production – Radical Roots, Radical Results

Beyond Buzzwords

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It is so frustrating to see truly radical and potentially powerful concepts being latched upon by those entrenched in the “system”. And when they are done with hijacking these terms and rebranding them to death, they make up their own. Classics I have heard recently: UnDiffusing, UnPrescribing and the famous decision by Sussex Partnership to relabel patients on acute MH wards as “Service Leader” even in the case of an enquiry into inappropriate use of restraint. To render the staff sufficiently “special and different” they are now termed Leader Leaders with their own Leader Leadership Academy.

In other words, WIA has become a documentary:

W1A

Co-production is one such buzzword very often used as a rebadging of patient/service user involvement. I see widespread co-option and dilution of more radical concepts like this in order perhaps to be able to slot them into existing structures without the risky and scary business of actual change.

Defining the Indefinable

The New Economics Foundation (NEF) defines Co-production as follows:                                                                                                                                                                                            “Co-production means delivering public services in an equal and reciprocal relationship between professionals, people using services, their families and their neighbours. Where activities are co-produced in this way, both services and neighbourhoods become far more effective agents of change” (NEF 2009)

The key words are “equal” “reciprocal” and “agents of change”.

It is NOT a synonym for public engagement, service user involvement or consultation. It is NOT just allowing people a say in decisions about themselves individually or collectively, and above all it is not something which retains power in the hands of professionals with the patient or service user brought in at a later stage.

As Jane McGrath @WeCoproduce of West London Collaborative rightly states
“I regularly have to challenge very senior people and we often get stuck at some point during the process. This usually revolves around denial of one consistent and very inconvenient truth: patient involvement is not co-production.”

https://www.kingsfund.org.uk/blog/2016/10/co-production-inconvenient-truth

 

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If we know what is NOT, then what IS it?

The term was first coined by Elinor Ostrom at Indiana University whose receipt of the Nobel Prize came as a surprise to many. Read more about her here:

http://educationnext.org/nobel-prize-winner-elinor-ostrom-and-her-theory-of-co-production/
The key point she was making was that public services were shown to work best when designed and run by a combination of professional expertise and community insight. Ostrom’s work divides participation into individual and collective levels. This is very relevant to health care. We can participate as individuals in terms of how we take responsibility for our own health and in sharing decisions with professionals but we can also link up with others either with similar issues or set of values to participate on a wider level in order to influence change as a powerful group. For more on Ostrom’s thinking developed in a healthcare context take a look at this article:

https://www.opendemocracy.net/openeconomy/victor-pestoff/here-comes-citizen-co-producer

Looking behind the buzzword early on by going right back to its roots created in me a pilot light that ignites when genuine Co-production is present and a warning bell that rings when it is being talked about but is there in name only.

The trouble with defining co-production is that it is primarily a reframing of the traditional citizen recipient/service provider relationship – from parent/child to adult/adult. it is more of a mindset than a model hence the difficulty faced by those in a system that relies on boxes and spreadsheets.  Those who feel naked without a precise definition are undoubtedly likely to feel very threatened for it is not a model, it is a way of being, acting and thinking. It is about seeing people not just as bundles of needs but as possessors of assets irrespective of how “throwaway” society may consider them.

“Throwaway People” was coined by Professor Edgar Cahn.  Cahn, a US civil rights lawyer and speechwriter for Robert Kennedy, suffered a massive coronary at 45. Pondering in his hospital bed upon the resulting apparent loss of who and what he was before he became ill and how that felt, he went on to found the Time Banking movement. This provided a vehicle to make Co-production a reality – the practical means to see to see those declared useless by society for whatever reason, valued for their assets, skills and life experience.

I read his seminal work “No More Throwaway People” and it immediately resonated particularly regarding the feeling that his heart attack seemed to rob him of more than just his health.

“I didn’t like feeling useless. My idea of who I was – the “me” that I valued – was someone who could be special for others, who could do something they needed. And here I was, a passive recipient of everyone else’s help” (Cahn, 2000)

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Are we blobs or squares?

We true co-producers are brave enough to pitch our tent in the no-man’s land between the factions which provides that space where we can venture out of the bunkers and over the patient/professional demarcation lines.

The Parable of the Blobs and Squares was created by Edgar to explain the complex issues around identity which may arise when people endeavour to put the theory of Co-production into practice.

 

Are we blobs or squares? Does your job title or other labels require you to change your basic shape in order to fit?

Or are you perhaps safer in the “patient” box? I was consigned to this box early on and though it was dark in there, it started to feel way safer.

Bridge builders

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How do we bridge the gap between two tribes of “them” versus “us” in practice?

As a healthcare professional you may be under pressure of deadlines and in possession of an ever-dwindling budget. Suddenly you are being challenged by patients to be less controlling. As a patient, I might have become ground down and cynical after years of attending events labelled “co-production” where the status quo has remained firmly in place and the locus of control firmly still in the hands of paid professional. I might be wheeled out to be “inspirational” while all the time screaming internally “but I could do so much MORE if you would let me!” This is where the Bridge Builders come in.

My thinking around this as usual came about from a very uncomfortable situation. I was delighted to be asked to work on a stand at the prestigious BMH/IHI Quality and Safety Forum alongside team members from the part of the NHS with which I was working as a Patient Leader. Shortly after arrival I was asked hastily to leave the stand as apparently did not have a formal NHS contract. Suddenly my “otherness” my “outsider” status was painfully clear. It was tough. I yearned to be a worker among workers, a friend among friend after such a long time in the wilderness. I had not worked due to illness for 17 years at this point. Trying to find “my” people, I sought out the Patient Panel and was not part of that either as I had not applied to join. I found myself in that no man’s land not at all sure who or what I was. Had I now morphed into a professional and therefore lost my “patienthood” or was I simply a patient trying and failing to be seen as a professional? Once the discomfort subsided I reflected on the fact that, though very uncomfortable, it was exactly where I needed to be.

I prefer to be a bridge builder rather than stranded on the banks. We Bridge-builders occupy the often uncomfortable space between patients/carers/citizens on one side and the demands of the system on the other. Dealing with Leaders for whom the ceding of control to a group of “outsiders” can be particularly challenging. That’s the thing about being a bridge, for people to meet in the middle the bridge must be strong enough to bear the weight. When we do this, it becomes less important whether we were labelled “patient” or “professional” but more that we work collaboratively, and broker trusting relationships to enable both “sides” to meet half way. A strong network will have these bridge builders, people who are able work across traditional boundaries while not losing that which makes us different.

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Who are the bridge builders in your organisation who will broker the relationships across boundaries that are needed for it to be a network rather than a club?

Timebanking as a catalyst for Co-production

Timebanking is a useful tool to enable organisations to make traditional patient and public involvement more co-productive by addressing the key core principle of reciprocity.

After many years giving my time for nothing as an active service user I felt at times undervalued as often the only unpaid person present facing an over-riding assumption that the only skills and experience I had were those related to my illness. I was not motivated by material gain but wondered what these assumptions said about my worth.

Here is a very useful summary of the first part of the book from Timebanking New Zealand. The woman who wrote it earned Time Bank credits for her efforts:

http://www.timebank.org.nz/node/87

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There was something about Cahn’s examination of what worth and value can mean that really spoke to me.

Filipe et al describe in the excellent article “The co-production of what? Knowledge, values, and social relations in health care” how Co-production/Timebanking can redefine our often overly rigid understanding of “worth”:

“This (Co-production) may generate new forms of care other than health care ( inclusive relationships, solidarity), values beyond economic value ( equity, justice), and new insights and research practices that are relevant to different disciplines and practices (community participation, patient advocacy, collaborative research)”.

I decided to try see the how the academic theories worked in practice by working on a Timebanking basis at the Holy Cross Centre Trust in Camden where Cahn acted as an adviser. I got paid for every hour of my time in one Time Bank credit. I had a range of activities I could choose from theatre tickets to guitars lessons but I  “spent” my credits on accredited training. Being tangibly rewarded for my time restored a sense of worth that the years of illness, unemployment, passivity and largely tokenistic service user involvement had removed. It changed how I viewed myself. Here in my hand at the end of my three-hour shift was visible proof that I still had something to give.

An example of the sort of exercise that help clarify the mindset involved in Time-banking and Co-production. It can be made really interesting by banning anything connected to professional identities:

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David Boyle explores this concept further in the following article from the Guardian Healthcare Network:

http://www.theguardian.com/healthcare-network/2015/feb/06/time-banks-patients-lives-long-term-conditions

Timebanking is just one of many ways in which patients/service users can be given a tangible indication of the level at which our contribution is valued. Many of us are unable to accept money or choose not to. My contributions were recognised in the form of genuine opportunities for training and development such as my Improvement Leaders’ Fellowship with CLAHRC North West London and being given a place on one of the NHS Leadership Academy programmes. These were life changing opportunities that enabled me to reconnect with the skills and assets that had become frozen over the long period of my illness and gain new ones.

I wrote more on my personal experience of this in this blog for the NHS Leadership Academy

http://www.leadershipacademy.nhs.uk/blog/learn-participating-mary-seacole-programme/

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Our health and social care services cannot afford to allow the insight and other life skills that people using health and social care services possess, to continue to go to waste. The only way forward is genuine collaboration – that powerful bringing together on an equal basis of lived experience and professional expertise. This can be challenging for all concerned. It involves redefining our jobs which may have become part of our very identities, coming out of comfort zones and being prepared to admit that we may at best only have part of the answer.

In Co-production: Manifesto for Growing the Core Economy Cahn warns in the foreword of the consequence of failing to heed this message:

“We will be unable to create the core economy of the future so long as we live in a bifurcated world where all social problems are relegated either to paid professionals or to volunteers whose role is typically restricted to functioning as free labour within the silos of the non-profit world. It will take massive labour of all kinds by all to build the core economy of the future – an economy based on relationships and mutuality, on trust and engagement, on speaking and listening and caring – and above all on authentic respect. We will not get there simply by expanding an entitlement system which apportions public benefits based on negatives and deficiencies: what one lacks, what disability one has, what misfortune one has suffered….Finally, because timebanking and co-production grow out of my own life and work in the civil rights movement, I have to add that hell-raising is a critical part of coproduction and of the labour that it entails and must value. Those with wealth, power, authority and credentials hold those assets as stewards for those who came before and in trust for those yet unborn.

Human rights

I echo Cahn’s rallying cry. This is very far from the rather safe world of traditional patient and public involvement so often talked about as Co-production. It can feel messy and risky. But if we are able to take the risk to emerge from our boxes of “patient” or “professional,” and venture into the territory where boundaries are blurred, and both “sides” are prepared to walk in the shoes of the other, then we have the potential to create something radically new. This is not about professionals having to relinquish power in an already chaotic and uncertain climate, but about strengthening the power base so there is more of it to go around.

Edgar Cahn called me a hellraiser when we met. It takes one to know one. Let’s resist the dilution into nothing of Co-production, reclaim the term and dare to become Hellraisers to keep its flame burning. 

 

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Further reading

More on Edgar Cahn’s work:

https://blogs.otago.ac.nz/time-banking-nz/2012/04/03/edgar-cahn-resources-online-and-in-print/

NESTA Co-production Practitioners’ Network:

http://coproductionnetwork.com/page/transitioning-to-coproduction

Governance International:

http://www.govint.org/our-services/co-production/

Full Article on Bridge Builders:

https://www.source4networks.org.uk/resources/case-studies/110-spotlight-on-bridge-builders

Blog “Co-production, an inconvenient truth” by Jane McGrath

https://www.kingsfund.org.uk/blog/2016/10/co-production-inconvenient-tr

Filipe A, Renedo A, Marston C (2017) The co-production of what? Knowledge, values, and social relations in health care. PLoS Biol 15(5): e2001403.

https://doi.org/10.1371/journal.pbio.2001403

 

 

Why?

 

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“We don’t deal with people, we deal with bricks and mortar” Housing Officer, the Royal Borough of Kensington and Chelsea

I will never forget those words. They were uttered at an event in North West London which aimed to get the various services utilised by people with mental health problems, to work together. The Housing Officer’s comment is now given extra significance by the fact that only a few years after it was said, the preventable deaths at Grenfell happened on her patch.

I write the week after the first anniversary of this outrage (I can’t use the word tragedy), and am recovering from the effects on my crumbling frame of walking silently and marching noisily with those affected – families of the dead, survivors, local residents, firefighters, mental health professionals, and others who, like me, care deeply.

I have been reflecting on why I involve myself every month in the Silent Walk and attend as many events as I can. The reasons are complex and intensely personal. I hope to unravel some of this in this blog. It would seem to be a mixture of empathy and fuelled partly by anger.

Empathy

I have lived with the effects of extreme trauma most of my life but particularly after an incident in Belarus spun out of control and led to the death of my Manager and colleague. I have written about this in other blogs in detail. I was dispatched to “sort things” by my employer Aberdeen City Council whose primary objective was to avoid political fallout. There politicians were behaving extremely badly that day and this reckless behaviour led to unnecessary deaths. I entered a gothic horror mortuary to identify remains believing firmly in the narrative I had been given about this “tragic accident”. As Victor Frankl said:

“Those who have a ‘why’ to live, can bear with almost any ‘how’.”

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I will never forget the day the Leader of the Council turned up at my flat late at night drunk and told me what had really happened, that the meaning that had kept me going through it all started to crumble. We had been lied to. I had been manipulated. Before she had even known they had died but were simply missing she had a superhuman, or rather inhuman, drive to protect her position. She found my dead manager’s camera, took out the film, brought it back to Aberdeen and had it developed in a private lab. She showed the pictures to me that night and I felt vomit rise up to the back of my throat.

Then of course, I started to struggle to keep the myth of what really happened going. I was already warned I had an “over developed sense of justice” so I had a need to tell the truth. They had a need to suppress the truth. Inevitably this was going to end in destruction. It led to PTSD.

Much of what helps people with trauma is “Management of Meaning”. Frankl knew this. I feel the trauma rising in me when I feel powerless. When I sat up watching online the horror of Grenfell unfold, I felt powerless. This in a nutshell is my WHY. It is WHY I turn up and do the monthly Silent Walk. This is WHY if I can, I shake the fire-fighters’ hands and thank them. I look into their eyes. I can see the trauma in those who were there that night. This is WHY the key, I believe, is collective action which unites the strengths of the community so they are not consigned to a box marked “victim”.

I became a victim. I bought into the messages I was given that I had no right to participate, no right to a say, no right to claim assets while dominated by deficits. It took a very long time for me to break the walls of the box down.

 

Anger

Grenfell and the response to it has consumed me with anger. Quite simply, I need to channel that anger in a positive direction or it turns in on me.

And anger is a major part of the grieving. I know what it is to be negated for having the gall to speak inconvenient truths to those in power. I know what it is to see blame being distributed to anyone and anything other than those who were actually responsible. At one stage, I was summoned to the Chief Executive and made to swear in front of a Justice of the Peace, that I had properly briefed the colleagues who died prior to going to Belarus on potential dangers. I still remember the exact words of my reply:

“May I remind you my job was to provide information on safety in Belarus, not to advise officers senior to myself how they should conduct themselves when abroad”.

It was inevitable that Survivor Guilt set in as I absorbed on some unconscious level, that I was somehow responsible. As I started to become unwell, the truth kept spilling out of me. At this stage, I had to be extinguished. And they very nearly managed it. However, if there is such a thing as “recovery” from something as extreme as this, it is not about “getting a job”, it is about finding my voice. These days I choose to be a voice rather than an echo.

Speakout

So much of this is familiar to me. Yet I am well aware I come to this with a degree of privilege. Despite my circumstances, I am certain the Royal Borough of Kensington and Chelsea agreed so readily to house me and then did so in the “posher” end of the Borough as I was still able to come across as one of their tribe – white, educated, middle class. The first property that came up was in North Kensington. I was informed I was allocated that property in error and soon was headed to Chelsea. There there was just as much anti-social behaviour but it was carried out by a public school educated son of a barrister who had relapsed on crack and set up a drug den in his flat right above me.

Assumptions, including my own, bother me. Some of the ignorance around Grenfell, the hate and bile belching from the Twitter accounts of some (usually anonymous) individuals, has really affected me. I have been trolled online in the vilest of ways as have many of the others who speak out in support of the Grenfell community.

“They were all illegals” “They were scroungers” “They all had foreign names” “Green was chosen as it’s the colour of Islam” “Why were these people allowed to live in Kensington in the first place?” “Why don’t they just get a job”.

Khadija

In fact, the people of Grenfell do not fit those stereotypes. Take for example the case of the super-talented Khadija Saye above.

I also compare this hate-filled narrative with the story of Bassem Choukair – a very popular and hard-working member of the great team at M&S in Earls Court Road. He died, his wife – a nursery teacher – died, her mother died, and their three beautiful daughters died. Bassem was so devoted to his team that he phoned from the tower at 2.30 am to leave a message for his manager that he would not be in to work that day and he was sorry for letting them down.

This, and countless other individual stories of the human beings who were incinerated in their own homes that night, just does not fit the picture the haters would have us believe.

Bassem

The book of condolence signed first by his colleagues then members of the Earls Court community and beyond gave a picture of a funny, friendly, dedicated family man. I know they miss him terribly.

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Once again, the haters choose to ignore facts like these.

In essence, Grenfell just like Chernobyl in which I was involved, Piper Alpha, Hillsborough and so on brought out the worst in humanity, but also the best. When Chernobyl happened, people were kept in the dark and were out rehearsing for the annual May Day march. M’aidez. Save Our Souls. First they took the officials to safety. They even got the sheep out before the people. It was easier of course to keep the lid on information in those days. It is not so easy now.

I have been showing solidarity with the North Kensington community since the day of the fire. The Devil may well be in the detail, but so are the Angels. Here are some small examples of things I have heard or witnessed personally over the past year which restore my battered faith in humanity:

  • The rise of Leadership in a community that previously believed no-one would listen to them. This already started with the renewed confidence that started to develop when Emma Dent Coad was elected our MP. The winds of change had begun almost imperceptibly to blow. When people from the Grenfell community were finally admitted to give testimony in the first Council Meeting after the fire, I heard them speak with such eloquence, dignity and power. This was community leadership being revealed before our eyes. I have never seen Leadership as being about hierarchical power but something citizen-led that was familiar to Lao Tzu:

LaoTzyLeadership

  • The courage of all kinds of people who went towards the fire to try to help. I am thinking of the nurse at St Charles Hospital close by. He was up early for the Ramadan tradition of pre-dawn meal Suhur.  He ran towards the tower along with other Muslims and started to do what he could. He distributed water along with the group to which he belonged who are all from Sierra Leone. After that, he went to work and did a full shift on a ward on which I have been a patient many times. That group from Sierra Leone lost one of their number in the tower.
  • On one of the silent marches I noticed a small boy with his Mum. He was sticking a picture he had drawn of his best friend Mehdi who died in the fire, on a pillar which had personal messages written on it. I spoke to his Mum. She told me of the support he was getting at school, but that his older sister also lost her best friend. She was at that stage still too traumatised to come out of the house.
  • Members of the CNWL NHS Foundation Trust Grenfell Support Team told me how one of them was working with a small boy who had lost his father. A tattered item of his Dad’s clothing was found in the wreckage. That staff member made a blanket from the tatters for him to hold close.
  • The firefighters of Red Watch Paddington ran the London marathon in full kit. Some were still traumatised from having been first responders on the day of the fire. At the Justice4Grenfell march on the 18th I spoke to a number of firefighters who were either directly involved in the incident or who had been impacted upon particularly by the blame that was being dumped on them from a great height. Every Silent Walk I do, see the firefighters on parade and I feel in my gut the intensity of the emotions they are feeling.
  • On the day of the anniversary, I met a number of survivors. I met a friend of Bassem Choukair, who was wearing a T-shirt with a picture of the six members of the Choukair family who died that day, pushing another survivor from the 9th floor in his wheelchair. To me this signified a great deal.
  • The space under the Westway where the Wall of Truth is situated and from which you can see the Tower, has evolved into a meeting place and a sanctuary.  There is a library. There are sofas set out. There is a chess club. There are candles. There is art. There is a piano. There is always someone on hand to listen, to chat to, or simply to sit in silence. These were not provided by some Social Services team, but came from the community members themselves, the grass-roots from which something about hope, about strength, repair and yes, justice, has tentatively started to grow.

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Thursday was about grief, about mourning and commemoration. The crowd of an estimated twelve thousand people marched from the Wall of Truth, up Ladbroke Grove, past St Charles Square where I was once housed in a homeless hostel, to St Marks Park where there people of all faiths and none joined the Muslim community in Iftar – breaking the Ramadan fast.

The highly emotionally charged silence spoke in many ways louder than words. In contrast, we marched through Whitehall on the 17th of June to demand action. We chanted, we shouted, we demanded. Of course it gave us a channel for anger. But among the chants there were again those tiny shoots of hope. In one of the many impassioned speeches, I heard words which are music to my ears as they sum up my own motivation in life.

“It is time to stop doing ‘for’ and start doing ‘with'”

And my favourite chant resounding through the streets of Whitehall:

“What does Community look like?” “THIS is what community looks like”

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This Community has empowered itself and the genie is out of the bottle and once this has happened it is impossible to stuff it back down. The days of being at best passive recipients of the largesse of the privileged, at worst, the silent victims of their prejudices are over.

Provided they do not succumb to the divide and rule that so often those at the top of the hierarchy utilise but combine strengths, there is hope for the survivors and families of Grenfell and the local community.

 

 

RIP Bassem Choukair, Khadija Saye and the seventy others in whose name change will come.

 

 

 

Reflections of a Burnt Out Revolutionary

I write from my room in a mental health unit. After many years of bleeding my often harrowing experiences in the health, social care and housing services all over the walls of conference halls and training rooms I find myself depleted of resources both physical, mental, and spiritual. I feel my skin has been sandpapered off very very slowly until finally I am left with my organs barely held together with a wafer-thin membrane. I was very close to taking my life last week. I do not say this lightly.

Why did I bother to give 100% of my mind and soul to trying to improve the culture of our NHS? You may well ask. In truth, it is now twenty years since I was diagnosed with PTSD and ended up homeless and hopeless, as described in other blogs. Using my experiences in the hope that no-one else ends up there has never been a “job” for me. I have had a single-minded and utterly sincere belief in the adage that the truth shall set us free.

I was prepared to traumatise myself over and over like the proverbial boot stamping on a face forever, if one, just one, person might go on to work differently as a result of what I told them.

boot-stamping-on-a-human-face

I fought hard against the commodification of qualities like Empathy and Compassion and the dilution and co-option of concepts in which I firmly believe, such as Patient Leadership and Co-production.

It is only now in hindsight, sitting on a ward after a serious bout of suicidal despair at being next to destitute despite all that I have given particularly to the NHS, that I realise I was commoditised and co-opted myself. In return for what I hoped would lead to a level of security ie a “real” job, I allowed NHS England to silence me to some extent, to dilute what I believe and what I have to say. That failed of course, and I now meet the consequences.

I am far from out of the woods regarding my health and the spectre of homelessness is always present. I am tired on what feels like a cellular level, let down and heartbroken.

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For this reason, I have decided to blog my thoughts on these issues now. I am not sure whether I will get through this particularly dark patch and there are things I do not wish left unsaid..

There are words galore on the subject of involving patients/families/citizens. We are an “untapped resource”. There is a “power shift”.  We are being “put” at the centre.

Simon Stevens, at the time of writing Head of NHS England, wrote this in the Five Year Forward View:

More broadly, we need to engage with communities and citizens in new ways, involving them directly in decisions about the future of health and care services”.

“None of these initiatives and commitments by themselves will be the difference between success and failure over the next five years. But collectively and cumulatively they and others like them will help shift power to patients and citizens, strengthen communities, improve health and wellbeing, and—as a by-product—help moderate rising demands on the NHS”.

Fine words, but is this revolutionary, new or even at all meaningful?

Discussion on the changing relationship between patients and the health and care system has been going on since before I was born. In 1964 journalist Gerda Cohen wrote in What’s Wrong with Hospitals “patients are becoming impatient of being treated like chipped flowerpots in for repair”.

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Even more tellingly, she wrote extensively in this book, about her observations of a psychiatric ward. In those days of course long-term, if not permanent, admissions were the norm. I very often use this quote from the book in my presentations:

“Self government by the patients must involve pretence because as soon as they encroach on real power, they are brought up short”.

Again, remember this was in 1964 and my feeling is apart from in some isolated cases, this remains true today.

At the time Cohen was making her observations known and for some considerable time afterwards the Medical Model prevailed and to a large extent still does albeit with a veneer that might suggest otherwise. In the Medical Model, the healthcare professional is the expert in control and the patient is there to be ‘fixed’ like that broken flowerpot. Interactions tend to be one way with the health care professional telling us what needs to be done. The focus is on diagnostic labels and finding a box in which to slot the “problem”.

So many of us have more than one health issue going on at once funnily enough. Right now for example, an extended period of extreme work-related stress has led to depression, anxiety, a recurrence of my childhood epilepsy with grand mal seizures, chronic back and leg pain and the discovery while all of this was being investigated of a large growth in my uterus. I am unable to work and so poverty and sheer terror at the possibility of being unable to sustain myself and my cat has further added to the mental health symptoms. I am at separate clinics for each of these issues. I found out that the Pain Clinic was unable, on discovering the growth, to refer me directly to Gynaecology in the same hospital but it all had to go through my GP. The GP surgery could not refer me without seeing me. I was however by this time an inpatient in hospital in another part of town due to bed shortages in my own area. I have had to wait to be transferred back to my Borough, feel well enough to go to the GP surgery in order to set in motion the referral back to the same hospital. That process when I eventually dragged myself to the GP, took roughly two minutes. I was also advised that the Pain Management clinic had no ability to liaise directly with my mental health team. Surely the two issues are linked and impact on one another?

Don’t talk to me about “integrated” or “coordinated” care. These are fine words once again, but the reality of my current experience is very different. Each symptom is treated individually by different healthcare professionals working in separate silos with little or no collaboration with those in other departments.

Bull Silo

Who has the genuine “helicopter view” over this fragmented, landmine-strewn landscape? The patients and their families of course. We have to find ways to negotiate our way through the maze when we are often at our most vulnerable. We patients know to our cost that this narrow, fragmented approach is at best frustrating, at worst actively damaging. Many never make it out of the maze. I sense their spirits are still trapped there, desperately trying to find the way to the centre or to the exit.

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And despite all our efforts, those of us passionate or mad enough to push for real change for no personal reward, largely remain recipients of “care” rather than truly equal partners.

This is certainly true in Mental Health. My current experience involves being ignored, negated and not even worthy of being asked directly what my name is. Despite standing right next to a nurse, she leaned across to a colleague, stabbed her pen in my direction and said “what is HER name?”. I already feel like an utter failure for ending up here again.. This sort of thing may seem minor but makes me feel subhuman. It feels like a different planet to the world I occupied when I had a contract with NHS Horizons when we blithered endlessly about rocking boats, being pirates, not following rules etc ad nauseum. Let me take you by the hand, Chief Transformation Officer, and I will lead you to the front line of an acute mental health ward….

Patients have not taken this paternalistic attitude lying down. Already in the 1960s, at individual and collective levels, patients were starting to demand more control over their own treatment and have a genuine influence in the development of the services which they used.  The first patient groups were forming and the notion of the patient as something other than a passive recipient of care began to emerge.

Largely this development seemed to have been welcomed but with some trepidation. In a debate on “Hospital and Patient Welfare” in the House of Commons in 1964, the MP for Abertillery the Rt Hon Rev Llewellyn Williams despite declaring himself suspicious of the new patient organisations as a potential refuge for “chronic bellyachers”, he does however go on to state:

What concerns me is the question of human relationships. This is the nub of the matter. In the post-war period we have witnessed incredible medical technological advances. Surgical skill seems to go from one new wonderful discovery to greater discovery still. We have discovered drugs which are indeed miracle-working. One would wish that there were a comparable advance in human relationships”

Policy since then has gradually seen the reframing at least in terms of rhetoric of the role of the relationship between the patient and the wider healthcare system – from the NHS and Community Care Act of 1990 where the formal requirement to engage and consult was first established to more recent Policy such as the Berwick Review which recommended that:

“Patients and their carers should be present, powerful and involved at all levels of healthcare organisations from wards to the boards of Trusts”.

Once again, fine words indeed…and there’s an endless stream of them it would seem.

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Here’s an example from Think Tank Land. In its 2014 paper on Collective Leadership for example, the Kings Fund recommends:

Organisations such as the centre for Patient Leadership also stress the importance of seeing patient leaders as a resource for change in health and social care organisations. Much like multidisciplinary team-working, collective leadership with patients would require a redistribution of power and decision-making along with a shift in thinking about who is included in the collective leadership community”.

All well and good, but having been an Associate at the Kings Fund, my observation is that behind the glossy facade there festers a culture that is as hierarchical, and toxic as the worst parts of the NHS. There IS no “collective leadership community” there. This is a nice soundbite to describe a fantasy world.

Formal policy leaves us in no doubt that we are “putting the patient at the centre”. This statement in itself is riddled with power imbalance. “We” ie the professionals, on “our” ie the professionals’, terms, will “put” the patient at the centre. When I hear that, I see myself as a pawn being placed on a chess board by some giant in a suit. I am never the Queen, just the pawn.

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Traditional Patient and Public Involvement, still largely based on collection of data and feedback, and at best having a token pawn or two on a Committee, more often than not, stops short of sharing power at strategic levels. Advances in digital technology and Social Media have already changed fundamentally the nature of how we patients interact with the health and care system and outdated systems for formal Patient and Public Involvement are falling more and more behind the pace of change.

As it states in the Five Year Forward View:

“We have not fully harnessed the renewable energy represented by patients and communities”.

There are yet more fine words which do not stand up to close scrutiny. The energy of patients and carers is not infinitely renewable. We are a finite resource that that risks depletion through ineffective, wasteful and tokenistic use.  Simply repeating declarations that we need to involve patients and carers in new ways with no indication of how this is to happen, in a glossy policy document or declared loudly from the platform of a glitzy conference, is not enough. I have waited for real action in this for years now. My head is bashed out of shape from its frequent collisions with brick walls. I am not sure I wish to continue to water dead flowers.

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The words of the Reverend Llewellyn Williams from 1964 ring equally true today with the added urgency from the NHS increasingly struggling to do more with a great deal less. Relationships remain at the heart of the matter, and the key to fostering sustainable working relationships is collaborative and partnership working in which power is genuinely shared at all levels including and in indeed, in particular, at Board level where the strategic decisions are made.  

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But where are we at Board level? By that, I mean having equal say in decisions, not just a “patient story” as the after lunch “inspirational” slot to wake everyone up after too much corporate buffet.

There is a smattering of Patient Director posts pioneered by courageous trailblazers like David Gilbert, but that is about it in terms of having an equal say in decisions at the most senior levels. This is a wasted opportunity. It limits vision.

Why do they fear our presence at these levels? Is it that they themselves have Imposter Syndrome? Is it simply that they have fought tooth and nail with much fur flying to get hold of power and are mighty unwilling to cede any of it especially God forbid, to a patient?  

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One Trust clearly fears patients to the extent that their CEO had the bright idea of having a red chair in the Board Room to remind people of the importance of “the patient”. These invisible patients are ideal. They are guaranteed not to cause trouble or ask any awkward questions. It struck me there may be a market for flatpack patients to cover all engagement needs. There could be supplements for the so-called “hard to reach” and a Premium service that would also take into account the need for diversity.

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Where does the much misunderstood term “Co-production” fit into this? Co-production is often considered a synonym for patient/service user involvement. The reason for this is that the system tends to co-opt and dilute more radical concepts in order perhaps to be able to slot them into existing structures which can SOUND radical but in fact be rendered “safe”,  and less challenging than the business of actually transforming existing structures and systems.

In The Challenge of Co-production, the New Economics Foundation defines it as follows:

“Co-production means delivering public services in an equal and reciprocal relationship between professionals, people using services, their families and their neighbours. Where activities are co-produced in this way, both services and neighbourhoods become far more effective agents of change” 

The key words are “equal” “reciprocal” and “agents of change”. It is not a synonym for public engagement, service user/patient involvement or consultation. It is not just allowing people a say in decisions about themselves individually or collectively, and above all it is not something which retains power in the hands of professionals with the patient or service user brought in at a later stage. Do you believe you are “doing” co-production? If so can you honestly say that it sits on the two way street of reciprocity, that there is true equality, and the patients/carers/citizens involved are truly able to effect change on their terms?

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The term Co-production was first coined by Nobel Prize laureate Elinor Ostrom at Indiana University. The key finding in her work in the criminal justice system in Chicago was that public services were shown to work best when designed and run by a combination of professional expertise and community insight. Ostrom’s work divides participation into individual and collective levels.  This is very relevant to health care. We can participate as individuals in terms of how we reclaiming power over our own health and in sharing decisions with professionals, but we can also link up with others either with similar issues or set of values to participate on a wider level in order to create the social movement that is mentioned in the Five Year Forward view.

Co-production was taken further by Professor Edgar Cahn, a US civil rights lawyer and speechwriter for Robert Kennedy, who suffered a massive coronary at 45. Time spent pondering in his hospital bed upon the resulting apparent loss of self and achievements before he was ill. He used this time well as he went on to found the Time Banking movement – the practical means whereby those declared useless by society for whatever reason are now valued for their assets, skills and life experience.

I read his seminal work “No More Throwaway People” and it immediately resonated, particularly regarding the feeling that his heart attack seemed to rob him of more than just his health.

“I didn’t like feeling useless. My idea of who I was – the “me” that I valued – was someone who could be special for others, who could do something they needed. And here I was, a passive recipient of everyone else’s help” (Cahn, 2000)

I have long observed that the power-holders can far more readily accept the idea of patients as individuals “taking responsibility” for their own health wrapped up in the pretty gift wrap of “self-management” but not quite so keen on the idea of collective influence, of strength in numbers, of a genuine social movement that is as social movements should be – inspired, mobilised, developed and led by the citizens themselves. Social Movements are just “FAB” as long as they are run by the officially endorsed Tranformistas, bureaucratised and stripped of any energy, fire and challenge which might just run the risk of the Bastille actually being stormed.

Cahn describes himself as a Hellraiser, and as such co-production has a major hellraising element. He described me as a Hellraiser when I was lucky enough to meet him. I take this to mean the definition of an Activist by Eve Ensler.

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We are out there, both inside and outside the NHS. Despite its claims to the contrary the NHS remains firmly based on Command and Control. The culture I have noted from my time working within national NHS bodies, is the antithesis of that advocated by Ensler, Cahn and countless others. There is a deep-seated fear of genuine activism that might just shake up the status quo and every effort is made to create pseudo-activists by such initiatives as the School for Healthcare Radicals. Real radicals do not need to be taught. Real radicals do not need a badge to proclaim themselves rebels. Real radicals who really do rock boats in their drive to challenge injustice and “make it better” run the risk of ending up like me – burnt out, chewed up and thrown on a corporate slagheap.

I will conclude this reflective piece with the words of Edgar Cahn, a man who would run a mile from wearing an “I am a radical” badge. His actions speak louder than empty words.

“We will be unable to create the core economy of the future so long as we live in a bifurcated world where all social problems are relegated either to paid professionals or to volunteers whose role is typically restricted to functioning as free labour within the silos of the non-profit world.

It will take massive labour of all kinds by all to build the core economy of the future – an economy based on relationships and mutuality, on trust and engagement, on speaking and listening and caring – and above all on authentic respect. We will not get there simply by expanding an entitlement system that apportions public benefits based on negatives and deficiencies: what one lacks, what disability one has, what misfortune one has suffered….Finally, because time banking and co-production grow out of my life and work in the civil rights movement, I have to add that hell-raising is a critical part of co-production and of the labour that it entails and must value. Those with wealth, power, authority and credentials hold those assets as stewards for those who came before and in trust for those yet unborn.” 

 

As for me. Was it worth it? Right now, I just do not know the answer….

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Together we can reach the top of the castle.

A person’s problem looms large but it is only a part of that person. We need to enlist and unleash the rest. You cannot mobilize on a deficiency any more than you can build on quicksand
Edgar Cahn
Author of “No More Throwaway People” & founder of the Timebanking movement.

Our work with our Sister City Bulawayo in Zimbabwe seemed to me to be based on a premise that we with the money and therefore the power, somehow had the right to dictate to those with less wealth and therefore less power, what was good for them. We expected nothing in return but a large dollop of gratitude. Right from the start I felt in my guts that this approach was wrong, that it was patronising and wasteful of the resources I could see were in abundance in the two communities in receipt of our largesse namely Homiel in Belarus, and Bulawayo.

I ended up on the receiving end of decisions regarding what was good for me, made by the largely well-meaning who held power over me after I became ill. I knew to my cost how it led me to be even more disconnected from any of my strengths as I became nothing but a bundle of needs to be met, and symptoms to be managed.

I knew at least that my early thinking that this was a wasteful and ultimately damaging view.

Compassion is not a relationship between the healer and the wounded. It’s a relationship between equals. Only when we know our own darkness well can we be present with the darkness of others. Compassion becomes real when we recognize our shared humanity.
Pema Chödrön, The Places That Scare You: A Guide to Fearlessness in Difficult Times

How did I learn to challenge the belief that compassion meant sympathy and was often more about the ego of the giver than the welfare of the recipient?

In the 1990s I was extremely privileged to be asked to arrange a visit to Aberdeen by a group of pupils from the King George VI Memorial school in Bulawayo. This was a special school in very many ways. It was for children and young people living with disabilities. They were in the UK to take part in a specially adapted Adventure holiday in Devon and they wanted to take some time to visit us in their Sister City.

My colleague who ran our Bulawayo Trust organised for the group to stay with young people with Learning Disabilities at the Rudolf Steiner School on the outskirts of Aberdeen and they helped me with the programme. It was my first experience working with the LD community and I noted that involving the took us down more creative and unexpected routes than I would have come up with by myself. They had the idea of showing the group one of our “indigenous crafts” and so introduced the group and me to a traditional “bucket mill” making wooden buckets out of wood turned using a water wheel.

I loved this group from the start. They were all highly motivated and determined. What I learned from the most however was that each pupil had a skill or ability that could be of use to one of the other pupils. Thus Thandiwe who was a wheelchair user due to having brittle bones disease had been taught sign language. She was the interpreter to the deaf pupil Umpumelelo who in turn, being able-bodied, helped Thandiwe get around in her wheelchair. I loved this assets-based approach that stressed the fact that we all, irrespective of what else is going on, have something important to give, if only the conditions were in place to allow us to do so. This became an important part of my own “journey” out of the passivity of becoming disabled myself, in my case having long-term mental health issues due to trauma

We took the group to Crathes Castle. We had a Scottish Tourist Guide showing us around and she, albeit in a kindly manner, announced that there was “no way” the disabled kids would be able to get up the spiral stairs. I mean there was even a trip stair designed to make the English invaders fall over and so give the Scots upstairs more time to either get out or get ready to fight. These kids were fighters too. As soon as their ability to get to the top of the castle was in doubt, their determination to do it increased a hundred fold. They helped one another up. Some had to go backwards up the stairs on their bottoms. It took a long time but of course, they did it. They all signed their names triumphantly in the Visitors’ Book right at the top of the castle. This small episode said so much about the ethos of the school and the extent to which it had been embraced by its pupils.

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They visited the Town Hall where my office was situated and we invited them to join us at a civic reception. Here they all are with my two guest contributors Nqobile and Mandisi right in the centre looking rather like the King and Queen on their thrones. I can tell it must have been raining as my hair is frizzy but it brings back so many memories to see them here with the guys with Learning Disability who accommodated them and helped me with the programme. My colleague Doug is in the photo, as are other members of our Aberdeen Bulawayo Trust which Doug administered. The group from left to right are Thandiwe, Lynda Fincham, Umpumelelo, Mandisi, Nqobile, Leanne, and Rosemary Drayton.

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Nqobile was born had severe cerebral palsy but he was one of the most determined young people I had ever met. There had been few expectations of him when he was born but they hadn’t counted on the sheer force of motivation in him as he grew up. I could tell he was a highly intelligent young man but that people’s assumptions regarding his difficulties with speech and so forth, somehow blinded them to this fact. I found communication with Nqobile very easy right from the start. I took on a challenge to find a way to get him some training in a specialist college. He was and still is the only African ever to get a place at Beaumont College in Lancashire. It took a lot of negotiation but together, we did it. Thanks to the seed of an idea planted after talking to Dominic Makuvachuma from Mind, also from Zimbabwe, I managed to track Nqobile down via Linked in so I am now able to give you Nqobile’s thoughts and reflections on the impact that visit had on him:

Over to you, my Zimbabwean younger brother:

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No Mountain too high!!                                                                                                                                                                                                                                         
The success story of a young man privileged to live with cerebral palsy.                                       
Before I left school in 1993, I was chosen to be one of six pupils to be part of the Calvert Trust Tour to England, Scotland and Devon, for three weeks. We participated in a range of sporting activities designed for people with disabilities. We also visited Bulawayo’s twin city Aberdeen and Number 10 Downing Street. Aberdeen City Council welcomed us by a reception and tour around the city with other young people with disabilities. And we were met by the wife of the former British Prime Minister John Major, behind the world’s famous door.

While I was in Aberdeen God opened an opportunity for me to have a chat with the twinning officer and I shared my vision of pursuing I.T. at Beaumont College and she expressed her interest to try to assist me to help me. I have learnt that when God puts a vision in a person He provides the right people to help to achieve it. After three months when I got back home, after three years of attempting to be enrolled at college and seeking for financial assistant, God used Miss Alison Cameron to negotiate with college authorities and College agreed. And the college offered a short course for three months and tuition fees came down from 25 000 to 4,200 pounds just for me.                                                                                  
Upon my return to Bulawayo in May 1996 I worked for the City Council of Bulawayo on a 2 year contract in human resources section as clerical assistance and assisting in training staff to use PCs. From 2001 to 2004, I started a printing business; I designed business cards, letterheads etc. from 2004 to date, I have been doing digital photos slide shows using Proshow Producer, sophisticated video editing program which allows editing video and mixing photos with sound track, all in many different formats.                                                      
It was interesting to share with other young people from Aberdeen their experiences.

Nqobile

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I am so proud of Nqobile. He has things he wants to achieve. He now lives independently, but I know he’d love to be able to drive. He has already had one lesson. If anyone can do it, he can. He does motivational speeches throughout Southern Africa. I am delighted I played a very small part in his journey.

Another of the group to whom I became very close was Mandisi Sibanda who also has cerebral palsy. She also had a great sense of humour. She was obsessed with British comedy ‘Allo ‘Allo and was always coming out with “Oh Rene” with exactly the right French accent. One day I was worried that her mobility level had declined. In fact she was pretending to be Herr Flick of the Gestapo so was mimicking his limp. She was also really into Mars Bars. I will allow my younger sister from Bulawayo to talk about this in her own words. She is never short of a few words….

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My name is Mandisi Sibanda. I was born on11 May 1978 with a disability called cerebral palsy. l started school at the age of 4 years old at King George Vl Memorial School in Bulawayo, Zimbabwe. By that time I wasn’t able to walk and l was using a wheel chair.
The day l shall never forget is when we were from a walk at Ascot shopping center. I recognised my mum from a distance. My mum had come to visit me. By then she was teaching in Victoria falls. I jumped from the wheelchair and l said mum l can walk and it was a big surprise for mum to see me walking. She prayed hoped for that and it was possible with the prayers and physiotherapy l got from KG VI.                                                         
I did my primary and secondary schooling at KG VI. l want to give thanks to Miss Rosemary Drayton who was our physiotherapist. And Mrs Lynda Fincham our headmistress by then who accompanied us on our trip to England and Scotland in April 1993 That was our journey of our lifetime.                                                                                          
That was the time when we met the beautiful Alison Cameron who was then the Twinning Officer between Aberdeen and Bulawayo. I really value her friendship and sisterly love she gave us. I remember the Mars Bars.                                                                                                               
I had a lot of experiences from KG VI we were always out on trips to places of interest. I was very much inspired by the trip overseas. I became a disability activist and motivational speaker for people with disabilities. I would still love to travel all around and my role model is Alison Cameron my big sis.                                                                                                    
After my schooling l did an Information Technology Computer course and l worked as a self advocate for people with disabilities with a local NGO and l used travel around Zimbabwe motivating people with disabilities which mainly focused on Children and Young People with disabilities.                                                                                                                                       
I was raised by a single parent and she is now in her old age. I am very ambitious still want to see the world and l do believe in dreams come true.

I would love to meet Alison again.

Mandisi Sibanda

 

I see that this wonderful school celebrated its 60th anniversary last year. I can see from more recent photographs that at the centre, they continue to create the conditions for young people with disabilities to live life to the full, to unlock skills, and foster the kind of determination which each member of the group had in spades. Their motto is “Still not giving up”.  I try to live my life according to their example.

“Be curious and however difficult life may seem, there is always something you can do and succeed at” Professor Stephen Hawking. RIP

 

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