“Roll up, roll up” Who in health is engaging who in what and why?
The NHS should be our friend from cradle to grave yet somehow we keep losing touch. How should the NHS approach engagement?
The following is the text of a speech made by Mark Brown at the Abertawe Bro Morgannwg University Health Board ‘Engage for Change’ event at Liberty Stadium Swansea, on 21st March 2019.
There are a number of different things that might be covered by the word engagement if you’re a health care professional.
Today, I’ve been asked to turn up and be a bit provocative. So what I really wanted to do is step back a little and think about what we actually think about when we think about engagement; to see whether it suggests anything about the whole idea of engagement in healthcare that we should be thinking about that might get lost in the cracks between everyone else’s much cleverer and more well thought-out talks and speeches.
I’m a bit of wildcard in the pack of speakers today. I’m not a health professional. I’m not an academic. I’m sometimes a patient. Sometimes a writer. I’m @markoneinfour on twitter. I talk about mental health stuff. I’m also development director of a small social enterprise. A lot of my professional life is spend at the boundaries of the NHS and of wider health and care policy. I experience mental health difficulties. I work on digital mental health projects. I turn up and wang on at rooms full of people hopefully saying things they didn’t expect to hear.
To give you all a sense of why someone thought it might be a good idea for me to come and talk today, it might be worth me setting out roughly where I sit in relation to what we might broadly call engagement.
About 13 years ago I had the ridiculous idea that it might be a good idea to start a national magazine written by people with mental health difficulties, for people with mental health difficulties that covered the ups and downs of life like any other lifestyle magazine expect that it took for granted all of its reader experienced mental health difficulties. After having the ridiculous idea me and my colleagues did something even more ridiculous: we actually did it. We did it for seven years. We paid our writers, all of whom lived with mental health difficulties, we got tens of thousands of copies out to the public for free via one of the national networks of charity shops. We sometimes got the NHS to buy copies for distribution in waiting rooms and places of treatment. We did articles that explained how things work; how people thought about things and how having a life with a mental health difficulty could be better if you knew how to make things work for you. We did it and some people liked it. Some people hated it. We made it happen. And it nearly bankrupted us.
At the start, we’d thought that the broader NHS would understand that a magazine written from the perspective of those living with mental health difficulties that could be a kind of friend which showed you how stuff worked and what to expect from the world and healthcare would be a useful thing to exist. Advice about benefits, news about policy, articles on broader issues that impact upon your life living with mental health difficulty… We though ‘the NHS doesn’t provide this, they’ll definitely stump up the cash’. Oh how young and naive we were (I was 30 when we started). Some NHS people got it, mainly people who actually spent lots of time with people who live with mental health difficulties. Lots just didn’t.
Why? Because the magazine wasn’t specifically about their trust or their service. How, they wondered would this drive engagement in their services? Where would the content about the paintings they had just bought for their corridors go? Or the press releases about them opening a new unit? In essence, they saw the role of a publication directed at service users as being a tool to drive engagement with their particular service. And that wasn’t us.
So, because we kept the magazine going and a global financial crisis happened and then a government implemented the largest ongoing set of cuts to public funds ever we did two things: we started to charge individuals a subscription fee if they wanted the magazine posted to them (10 quid a year) and I had to find other stuff I could do that would stop our company turning into a pile of smoking rubble.
Which is what has got me here, a person who still experiences mental health difficulties, who sometimes helps out on policy work, supports national charities on strategy, does big projects that involve people who experience mental health difficulties, who writes for national publications on mental health related stuff, gets to talk to rooms full of people and has over 23 thousand followers on twitter. And is still skint and also massively tired.
The last 13 years for me have been about engagement. I’ve thrown myself into the world of mental health and then learned how to swim. No one is obligated to speak to me or to listen to me. All of the work that I do is based either on me being massively interested in what other people are doing or saying; or in reaching people and making them interested in what I’m saying. I don’t have the protection of a professional title or a royal college or big organisation. I can’t demand anyone listens. There is no built in audience for me and nothing to hide behind.
Every new contact, new reader, new meeting, new colleague has to be won by being true to the things I say and being honest, authentic and worthwhile. People pay me because of what I can do and because of my own particular position on things. People see what I stand for and where I fit in with other people or things. Every day is about engagement. Without other people’s respect, enthusiasm, criticism and fellowship I’m just a lanky prawn mucking about on the internet. Nothing I do can work if I can’t find ways that what I want to happen meets what other people want to happen.
For me, engagement is finding an agreeable place for me and my objectives in the lives of other people; and finding a place for the lives of other people in shaping what I try to make happen. Engagement is about being present for other people. It’s about being there.
Engagement is important if you need other people to make things happen. So one of the things we’re going to have to explore is where and what we might be for other people.
Turning up and owning it
Engagement is one of those lovely English words that means lots of different things depending on context. One meaning is to agree to marry someone. That’s probably the most common usage and the one that I’m going to speak least about and now that you’ve seen me in the flesh is the one you’ll be least interested in, too.
Another meaning of engagement is to make an arrangement to meet someone or do something at a particular time. Me standing here is fulfilling an arrangement made to bring myself here and say something half sensible about the idea of engagement. Generally speaking, health care professionals recognise the importance of keeping to arrangements, so I’m sure that’s something we don’t need to worry about too much, even if funding pressures and stresses on the NHS make it harder than ever to do so.
You get it. Do what you said you’d do when you said you’d do it.
One of the most common complaints I see from people with more severe and long lasting mental health difficulties is about NHS mental health staff not doing things when they said they would, like crisis teams not ringing back or benefits letters not being sent or prescriptions not sorted out. So maybe the idea of keeping your engagements and your promises to turn up is actually an important one as a basis for the other more pertinent meanings of engagement I’ll cover in this talk.
Sometimes we need to engage in battle for what’s right
Engagement can also be the act of beginning or committing to a fight, or a specific set of battles within a period of time in a war. When a military unit moves into fighting with an opposing military unit, they engage them. This is might seem very far from the reality of delivering healthcare; which is about healing, not hurting. But in other ways, the idea of engagement in battle is uncomfortably close to home after ten years of austerity and cuts and with a potential national crisis in the form of brexit unfolding. Making sure everyone gets good healthcare and no one is excluded is in itself a political fight.
Many have long had the dream that it might be possible to stop the provision of health and care services being a political football, but the reality of providing health care and social care is that it is inherently political. The NHS came into begin because of political will. There are some out there that think an NHS should not exist.
There are others out there that think professional healthcare is a conspiracy against them. The anti-vaccination movement has recently been recognised by the World Health Organisation as one of ten threats to global health in 2019 alongside such things as weak primary health care, antimicrobial resistance and famine, conflict, drought and population displacement.
NHS Providers recently published a report ‘Mental health services: addressing the care deficit’ that identified widespread concerns amongst NHS leaders “about benefits cuts and the impact of universal credit. It also suggests that loneliness, homelessness and financial hardship are adding to pressures on NHS mental health services.”
Docs not Cops have been working to end the hostile environment in healthcare which was introduced by the present government obliging NHS Trusts to check patients ID and charge people upfront for care.
Even the very existence of our Welfare State, of which the NHS is part, has come under attack. When we work with people that society tends to care less about or who are more vulnerable, even keeping the needs of those people at the heart of what is happening is a struggle when others want to direct funds to other more eye-catching and less stigmatised areas of activity.
So, maybe, there is sometimes an element of engaging in battle with the enemies of universal, high quality health and social care that’s needed, especially when the alternative is suffering and needless loss of life or the pointless erosion of the fabric and quality of the lives that people lead.
People who are marginalised need those who provide services to be their champions and allies. To shout not just for the needs of their service, but to shout for the needs of those people beyond that service. People with mental health difficulties and people with learning difficulties are often ignored, spoken over and spoken about. Professionals, even though you might not feel it, have the power to change the course of public debates and public attitudes and to shape how policy turns out. You have already engaged in the battle by choosing your career, the objective is to find ways of winning that actually make the lives better of the people on whose behalf you work every day.
More like the engagement you were expecting
Other meanings of engagement are a bit closer to what we might expect. The first is the extent to which someone is involved with something or is choosing to be involved or pay attention to something, the second the “the process of encouraging people to be interested in the work of an organization, etc”.
There’s lots of funny linguistic stuff around the NHS and health care and engagement. Roughly speaking, there’s two different things we might be thinking about: The engagement or interest of people in their own healthcare and health in general; and the act of getting people to join in with, or be part of, the organisations that provide them care.
People love to talk about ‘engaged patients’, and to try to quantify what being an active patient means for someone’s health outcomes. It’s generally accepted that the NHS is now as much a chronic conditions management service as it is an acute crisis treatment dispensing system. What is required is a consideration of people’s health across their life, not just when they turn up at the GP or at hospital. And that’s really difficult if the person in question, whose health it is, doesn’t want to be involved.
Then there’s engagement in the form that we are maybe most often thinking about when we think about engagement: the act of reaching out to people to get them to both understand what healthcare options are available and how those options might work for them. And, as has been written into successive national and local policy documents, even inviting or making space for people and communities to shape the actual health and care support that is available to them and others like them.
But how can we ask the people we ask the community for help if we aren’t even part of the community?
We’re all bad at communication
One of the challenges of engagement is working out where we fit into the lives of others and what we are to them. Engagement is about making relationships.
Relationships require a number of things to be present before they can blossom. Not all of our neighbours turn into our friends, contrary to what the television theme tune led us to believe. To really form a relationship with someone requires four things:
- Forming a relationship requires, firstly, repeated exposure. You have to see people more than once, and usually a lot more than that
- An affinity or spark. There has to be something that you feel you have in common or upon which you can both agree
- Something attractive. We aren’t always good at making relationships with people with whom we’re bored or with whom we feel we have little in common, but sometimes we just click
- A shared undertaking. It really helps if we’re working toward something together, even if it’s just grumbling about a third neighbours hedge or the bin collections
We get to know people when they’re a part of our lives and then we click with them. NHS organisations aren’t people, of course. They’re machineries for delivering health and care to people who need it. But they are also collections of people.
For a healthy relationship be possible, there must be the possibility of rupture and the possibility of repair. We must trust the other enough to raise with them when our needs aren’t met or we feel hurt, and we must accept the same when it’s levelled at us. The relationship must be reciprocal and must be able to repair itself when one of the parties feels unhappy or hurt or betrayed. A relationship must be worth it for both people to risk things enough to make it work.
Engagement requires not just trying to interest someone in the service or message you’re hoping to get them to act upon; it also requires your interest in them. Too often the NHS is like a travelling circus that turns up once a year, sets up the tents and tells people to ‘roll up, roll up’. Then is oddly disappointed when no one does.
Human interaction is a tricky business. We spend most of our time inexpertly signalling our wants, needs, ideas and feelings to each other in incredibly slapdash ways. We say one thing when we mean another. We show our inner states in ways that look from the outside nothing like we intended. Even if we get the tune right we often play it on the wrong instrument or sing it in the wrong key or bash it out in the wrong tempo. We make our sadness sound like a tango; our anger comes out like a jolly nursery rhyme, we express our love like a heavy metal record.
You can guarantee that given the opportunity, all of us will fail in one way or another at communication. We’re all prone to taking the wrong problem to the wrong person, or spending ages finding the right person to talk to and then telling them all the wrong things.
Writing about the NHS on its seventieth birthday last year, I was reflecting on what it means to us: “The NHS reflects our expectations of being cared for, of being looked after when we are in need. It’s one of the few remainders of a vision of the future where we were all winning, not just a few. The NHS is our collective vision of a machine that keeps us well. It’s as central to British identity as bunting and curry and plantain and people shouting in pub car parks. It is the British people in institutional form: mucking in together, always near a crisis, always muddling through. But above all: always there for each other.”
We love the NHS, but in the way we love a family member. Sometimes we fall out with them, sometimes we don’t speak to them for years because of something they’ve done, sometimes we won’t leave them alone for help we think they should provide, but when it comes to it we feel a kind of flesh and blood kinship. The NHS is more than just another service. It’s something people think of as theirs. So why is engagement such a problem?
It isn’t true that people aren’t trying to engage with the NHS or in issues around their own healthcare. They’re trying all the time, but they’re doing it on their own terms. If engagement is about relationships, then it must also be able to include the possibility of arguments and making up. The website Care Opinion provides a service to health and care bodies where anyone can upload a comment or complaint about services or treatment they’ve received. These comments are then published online along with any responses to them. What once might have been handled behind hushed closed doors is suddenly out in the open for others to read.
What it shows is people do want to talk about their care and do want to influence how it turns out. It may not always be diplomatic, it may not always be in a form that is easy to swallow if you are part of delivering that service, but is usually a genuine attempt to start another conversation about what care and treatment means to that person and what they might need.
Humans are amazingly sensitive to each others attempts at communication; which is why we so often find ourselves in the paradox of wanting ourselves to be understood while also wanting not to be exposed or vulnerable. Relationships, the heart of engagement, are based on such imperfect communication.
I was reading a book recently, ‘How Conversation Works’ by Ronald Wardhaugh. In it, Wardhaugh remarks: “If we were to attempt to say what any utterance in a conversation meant and, in doing so, ignored its context of use, we would be forced to conclude that its meaning would be vague and ambiguous. It is just impossible to say what most utterances mean, or what their intent is, without having some knowledge of the situations in which they occur.”
He says it’s not just what people say but “the surrounding physical context, previous conversations between the participants, relevant aspects of their life histories, the general rules of behaviour the parties subscribe to, their assumptions about how the various bits and pieces of the world function and so on.”
The desire to be heard, the desire to be recognised as another human and the desire for some kind of give and take is a human fundamental. For engagement to happen, we need to understand where each party is coming from and what the world looks like for them. Which bits of communication cause us most difficulty depends on where we grew up, where our families are from, which communities we belong to.
Growing up with West Indian grandparents in Swansea is different from growing up in the west end of Newcastle a couple of generations from going down the mine to growing up Jewish in the home counties after your parents left the East End of London. Sometimes we belong to actual functioning communities where we play reciprocal roles in collaboration with others. Sometimes we belong to more notional communities. We might think of ourselves as many different things. We might think of ourselves as European and British and Welsh. Or polish. Or gay. Or as a mother. Or a proud geordie. Or a gamer. Or a feminist. Or as muslim. Or a trans man. Or a pensioner. Or a student. Or a nurse.
We sometimes fall into the trap of thinking that community is a simple thing and that if we just find the right ‘community’ then we’ll reach all of the people in it if we send them the right posters and the right leaflets. Relationships have to be deeper than that. A relationship that lets you get to know people better and lets them do the same for you. Consistency and humanity is the key. The NHS can’t reach and serve people in any community without making itself part of that community itself. Just being there geographically doesn’t count.
The NHS and the amazing people who make it up must be out there in our communities all the time. The NHS is an amazing collective gift we have all decided to give each other. It shouldn’t ever feel distant. It shouldn’t ever feel unsympathetic. It shouldn’t ever mislead or over or under promise. Engagement shouldn’t feel colonisation or like setting up an outpost in an occupied land. The NHS is our friend from cradle to grave. But like a friend, if we don’t see it socially, we lose touch and forget what was special about them in the first place.
Engagement needs to first do the awkward, clumsy, shy getting to know you conversations with people and communities and places and then keep doing them until everyone is high-fiving each other and inviting each other round for tea.
People want professionals that make public services human-sized
Way back in 2014 I gave one of my first big speeches to NHS Expo in Manchester. I’d been asked to talk about social media and mental health but instead I talked about the NHS, health professionals on social media and what that meant for engagement. I started with a little nostalgic nod to a particular kind of comfort:
“It’s Sunday evening. The house is filled with the smell of ironing and leftovers and the sound of grumbling kids and grumbling adults all counting down the hours to Monday morning. You and the family settle down to watch something comforting and gentle on the television.
“It’ll be set in some time between about 1920 and about 1963-ish. If it isn’t set then it’ll be set in a rural community somewhere as if it were 1920 to 1963-ish. It’ll feature an affable public servant. It might be a police officer. Or a doctor. Or a midwife. Or a district nurse. Or a coastguard. They’ll spend each episode doing their job but also being involved in a whole variety of shenanigans. The message will be they are a valued part of this particular, peculiar community of people. Occasionally they’ll come to blows with someone from The Ministry or similar, someone who represents the far-distant bureaucracy ‘who don’t understand our local ways’.
“What these Sunday night comforts all share is the nostalgic appeal of a world where public services were explicable, knowable and human sized. It’s the fantasy of the local GP having a few pints in the snug of the local pub or the beat bobby who slurps tea in the local cafe. Its a yearning for the days when public services felt like they grew from communities, rather than being distant, complex structures that lurk at the edges of everyday life. It’s the wish to feel like there’s someone who is part of our world that can also help to understand the world of public services.
“Social media is in some ways the latest village square or local cafe. It’s a place where people check in to hear the latest news, catch up with friends, debate, flirt, ferment revolution and/or swap dirty jokes. In short, it’s a place where people do people stuff. Social media is where people are.
“It’s very easy to underestimate how much of how the NHS works is opaque to the public. It’s like a big castle with high walls. It’s very easy to underestimate how much of how the NHS works and what the NHS does is opaque to the people actually working for the NHS.
“There’s a difference between giving health advice and discussing health issues, just as there is a vast difference between individual treatments and the service which delivers them. The NHS isn’t staffed by robots. In fact we’re so scared that the NHS might be losing its human touch that we’re talking about training people in compassion and empathy.
“So, what’s this got to do with public professionals and social media?
“Public professionals talk about their job via social media. They combine two things: they appear in the public realm talking about their job in way that used to only be possible if a journalist thought you interesting enough to interview. They talk about the pleasures, they talk about the joys, they talk about the difficulties, they talk about the issues that arise from doing it. They put a human face and a human voice to what otherwise might seem a semi-robotic function. They help the public to understand the process, the practice and the limitations of healthcare.
“Public professionals inform the public of their practice and in turn have their practice informed by the public. Public professionals talk to each other, they talk to non-professionals, they carry information into areas where it isn’t usually found. Using social media they get ‘out and about’. Public professionals learn from the blogs, tweets, videos and discussions that they find themselves in and carry this understanding into their work. It’s easy to forget just how much taxpayer funded knowledge and wisdom is currently sitting within the staff of the NHS. It’s awesome but it also ends up hidden from the people who paid for it. Public professionals jailbreak that knowledge and carry it out into the community via social media.
“It’s hilarious to me that the NHS has a challenge with engagement and involvement. Public professionals mix with people via social media (and often in real life too): they’re the person you talk to who is also a nurse, or a the person whose blog you read who is also a doctor. Public professionals are engagers and connectors by nature. You can’t do social media well without connecting with people. For people like me, who aren’t in the NHS, public professionals are a point of entry, a way into understanding it better and a guide to navigating the complicated flows of information, misinformation, spin and rumour.
“If we trust people to make life or death decisions over others we can trust them to have opinions. If we’re battling for hearts and minds, which I think we are with the NHS, then public professionals are the best ambassadors there are.
“Public professionals are a two-way conduit. They take information out of its NHS castle and while they’re outside, in the bustling town square of social media they learn, and talk, and listen and they take information back into the castle, too.
“And, being part of a social media communities and relationships means public professionals stick around through the good times and the bad times because they’re a person relating to other people. You can’t be all ‘share our good messages, retweet our opportunities, big us up’ and then lock down your twitter account when a scandal breaks.
“Doing social media isn’t a separate job from doing a ‘proper job’. Public professionals fit in blogging, podcasting, tweeting around the rest of their work. You don’t need to be a social media expert to do social media. You just need to know your subject and just need to be really, really passionate about discussing it.
“The rules for being a public professional via social media are really the rules for any healthcare professional: Listen, speak with respect and care, know your subject, don’t talk about the benefits of your work without discussing its limitations, don’t think you know everything, be proud of your job but not blind to its failings and be an advocate for the best of possible worlds by understanding where things are worst.
“While social media isn’t the be all and end all of things: The public sector sometimes only gets the urge to engage with people when it wants something. How do you expect to engage the community, care for the community and be supported by the community if you’re not part of the community?”
Of course, social media has big risks, too. For women, for anyone who isn’t white and straight, there is an horrific undertow of prejudice and bad faith. But what I described as being possible online is also possible offline if you treat the communities you serve as your neighbours, not your problems.
I’ll give you my one massive tip for doing anything online: beware of context collapse. Context collapse is what happens where something that is created with one purpose in mind or for one platform changes meaning when its transferred to another. Whatever you make on social media always think: ‘would this make sense in the same way if someone saw it in another place or separated from everything else around it?’ If you make sure your every post makes sense within itself and can stand alone, you’ll be golden.
If you want to engage with people you have to treat it as if it really matters
I think the first main thing to think about around engagement is knowing who you or your organisation is for the people with whom you’re trying to build a relationship. It’s terrifying to look in the mirror and ask ‘would I enter a relationship with me?’ but it’s necessary. The NHS isn’t a travelling circus with clowns and popcorn and trapeze artists. It’s a lifelong friend. Razzle dazzle and shouting isn’t going to make those relationships. Being there and being authentic and keeping your promises will.
An NHS organisation that fails people, as in the tragic and avoidable case of Connor Sparrowhawk and too many others, must win back trust not be shifty and destroy it more. THe NHS isn’t a massive corporation that should use public relations to hush things up. It’s a part of who we are as people of this country.
To have engagement you have to be engaging yourself. I’m working on a big project based on interviews with people who are doing coproduction. One of my interviewees from Newcastle talked about the importance of being ‘canny’; which means being decent, friendly, warm, approachable: someone you’d want to hang out with. For them, coproduction wasn’t based on getting people together to coproduce stuff; it was based on first getting people to want to be together with each other. So, being engaging means being interested and interesting. Try to think of what that might mean at an organisational level.
The other main thing, I think, to think about is this: Why did you decide that engagement is important?
If you said you wanted to engage people in the thing that you do and no one turned up or you couldn’t find anyone to engage and you could still do the thing you do: did you really want or need to include anyone at all?
If you were putting together a clinical team and the nurses didn’t turn up, there’d be no chance of taking the work of the team forwards. If you were organising a community transport service and you couldn’t find any drivers or any people who wanted to be driven anywhere; you not be able to to do a community transport scheme. The people you needed to work on delivering the thing were integral to the thing itself. Without them, the thing doesn’t work or happen.
This might sound like a poor and obvious point, but actually there is something about it that gets right to the heart of what I’m talking about. If the thing you’re doing works without engaging people, was it really ready to engage with people in the first place or was the idea of engagement a bit of an add on? Something that was more an ideological desire than a practical plan? How come, if engaging people in the design or development or delivery of something was so important, was it possible to do the thing successfully without them?
The answer is usually that, despite our rhetoric of working with people, patients and communities, if we can continue without them, we actually are mostly just sprinkling them on top of projects and plans like hundreds and thousands on top of a ready made trifle. To really include people in the things you’re designing or delivering means taking the risk of making their contribution actually matter.
And if something matters you have to be prepared to make sacrifices to make it happen. You can’t just ring up the community when you want something from it; or roll into town without any preliminary work building bridges together and expect everyone to turn up. You can’t expect to influence policy without spending time engaging with its production and grappling with the issues. People know when you’re insincere and people know when you are just tolerating them so that you can get what you need. In my experience, many community or engagement exercises involve far more humouring of the professionals by the community than they do the humouring of the community by professionals.
Building relationships takes time. And often in NHS terms time equals money that you don’t have.
But if you really are neighbours and part of your community, put the kettle on when you get back. Maybe go and knock on the doors of the people you’ve not got to know yet. Tell them what you do and ask them what they do and then maybe suggest some time or place where you can get to know each other better. As the NHS increasing becomes a service that helps people live longer with more needs, mainly because it’s effing awesome most of the time at not letting people die, these relationships will last for decades, not weeks.
If the NHS was your friend and neighbour, who you expected to have a relationship with for the rest of your life how would you want it to treat you? And how would you feel if it didn’t?
I think it might be time to put the kettle on.
@markoneinfour
Mark Brown is writer in residence at Centre for Mental Health.
