Designing out the forgotten spaces: making inpatient experiences in mental health better
When we accept low standards and horrible things for mental health inpatient care, we tell people that they do not matter and that we do not care about them. That is just neglect and we should be ashamed.
The following is the text of a keynote speech given by Mark Brown to the Design in Mental Health conference at the National Motorcycle Museum in Birmingham on 16th May 2018
‘The institution’ looms large over the history of mental health,” said then Conservative health minister, and later racist pin-up, Enoch Powell in 1961 in his famous ‘Water Towers’ speech: “There they stand, isolated, majestic, imperious, brooded over by the gigantic water-tower and chimney combined, rising unmistakable and daunting out of the countryside — the asylums which our forefathers built with such immense solidity.”
I didn’t think I’d ever be quoting the words of arch racist Enoch Powell to a room full of people in the Midlands. I didn’t think that they’d still be relevant. But there you go. Life comes at you fast.
What Powell was saying, in the speech that I wish was his most famous rather than the deplorable racist one that keeps coming back into the public eye like a turd surfacing in a swimming pool was this: the institutions we build around mental health seem to be eternal. Built of bricks and mortar and concrete they become a proxy for our thoughts about those whom society finds most troubling and challenging. The buildings in which we ‘treat’ those who are unwell seem eternal, like mountains or valleys. They’ve been there forever, they’re never going to change. The impossibility of change gets in our bones. Mental health inpatient care has that ’immense solidity’; we might be able to change it a bit, but, the realists say, its always going to be with us like racism or structural inequality. To which I say bollocks.
I’ve been given the job today of bringing a bit of vision and a bit of grit, to help us to avoid the corrosive stoic realpolitik of the NHS and inpatient care for mental health and to help to frame the question ‘where are we actually trying to get to?’
I’m not a designer. I’m not an estates manager. I’m not a person who works for a hospital. I’m not a person who sells antibacterial furniture or anti ligature curtain runners. I’m not someone who has been to hospital for their mental health yet but there’s a fair statistical chance I will at some point in my future. What I am is a person who really cares about mental health, really cares about what happens to people when they are at their most vulnerable and most distressed and someone who really wants the future not to be as shit as the present is.
I am someone who believes in design as a force for change. In my day job I think a lot about how design thinking can be applied to wicked social problems. I’m also someone who knows that design is not a neutral process like a chemical reaction. Design happens in a context, comes with assumptions, the biggest assumption being that clever people get to make the world for other people not lucky enough to be as clever as them.
Design the future
I gave a talk at NESTA last year about the future of mental health, where I discussed the seeming impossibility of conceiving of a future in mental health that didn’t look just like today but shinier. I told the room: “When we think about mental health we cannot even answer the simple question: what would the best future for people with mental health difficulties look like?
“At present we are busy trying to make a future from the past, a future that answers the questions of now, rather than a future based on the possibility of transformation, of redefinition, of liberation. It is almost as though we are afraid to dream for fear of being rebuffed, mocked, derided. We have been told that the future of people with mental health difficulties is not a place for dreams, desires and demands. We must take the future we are given.
“If some dickheads can invent a robot shop that follows you about then we could have anything we wanted for mental health. Well, we could if we could let ourselves dream. And if others would let us dream. And we don’t let ourselves dream.”
Design for mental health is often caught between two competing impulses: the utopian and the mundane. In a world of squeezed budgets, never-ending austerity and public policy by tabloid inquisition, it feels like the redefinition of what it means to be in hospital for your mental health and how it feels will always be a kind of embarrassing dream, voiced in halting tones then hushed up again when the serious people begin to look at their tablets and A4 diaries.
In this talk I’m going to be switching between the utopian and the practical a lot because if we don’t know what we’re aiming for we’ll never know where to direct our efforts: the future will be the next five minutes rather than a place where things are better. In the melee of competing present demands the future goes dark. And when the future goes dark we lose sight of our responsibility to make things better. We solve presenting problems without being able to picture a time when those presenting problems do not present. We make do and mend until our clothes are all darning and patches and then, embarrassed, we claim this is how we meant to dress if we are ever dragged out into the light of day.
There should be no forgotten places
It’s easy for mental health care to become one of the world’s forgotten places, a dark tale to threaten children with. The spotlight will only turn on the gloom when something scandalous happens, and even then it will be a brief and dim illumination. In March the Guardian revealed that coroners reports show that at least 271 mental health patients died due to failings in NHS mental health care between 2012 and the beginning of 2018.
These failing included inadequate supervision of someone who was a clear suicide risk; NHS staff ignoring families’ fears that their loved one would take their own life; mistakes with the patient’s medication; and failing “to properly assess the risk that the patient would take their own life.”
Forty five of the cases involved people being discharged too soon or with inadequate care, forty one treatment being delayed, and seventy two poor or inappropriate care.
Despite the best efforts of the Guardian, there was next to no public outcry. No barricades. No demonstrations. Away in the forgotten spaces people died and still no one cried out for change.
People with mental health difficulties, noses pressed against the window
What we do when people are unwell matters. How we design that experience matters. How that experience works and how that experience feels matters. For every patient who spends time in hospital, that experience will be a book of moments which tells them not only who they are in relation to services but how the world regards them at their time of illness.
All of you in this room have a role to play in making sure the design of our inpatient environments does not kick people when they are already down. All of you have some power to make sure that people who have already been harmed by the world and by the effect that has inside of their heads are not further harmed by their time in what is meant to be the place that helps them put themselves back together. But more than that: you all have a role in saying ‘this is not good enough. When someone is hurting or confused or terrified they should be treated like a monarch, not a prisoner.’
The design of therapeutic environments is designing a product for multiple ‘stakeholders’. Around the table there are a range of ‘customers’, each with its own specific set of requirements and preferences. The Treasury. NHS England. The Trust Board. The Care Quality Commission. Estates Management. Procurement. The CCGs. The Sustainability and Transformation Plan. The Sustainability and Transformation Partnership. Local Councillors. Local campaigners. Local NIMBYS. Then maybe the psychiatrists. Then perhaps the clinical psychologists. Then possibly the mental health nurses and independent advocates and academics. Diligently we square off these competing policy, financial, strategic, political, medical demands and feel like we’ve done a great job. We’ve met the needs of all of the customers.
But there is a smaller voice, a quieter voice, not so much a spectre at the wedding as a poor urchin, nose pressed against the window. ‘Please sir, please madam, can I have something less awful?’ That’s the end consumer there, a constant, persistent, harmonious choir of voices that no one takes the time to stop and listen for, constantly shouted over and made small. The end user in mental health care isn’t the hospital or the unit or the trust: it’s the person who has to stay there.
Listening isn’t performative
And as anyone who has a design background knows, if you design without your end user in mind, you might do great design that makes perfect sense based on all of the factors you’ve considered, but that doesn’t make it good. In the commercial world, it’s not always the best designed thing that wins the commercial race. Price, distribution, advertising all play a role. In design for mental health bad design wins because, to what should be our eternal shame, we have a captive audience of consumers who don’t have the opportunity to choose other, more preferable products. We sell to the people who hold the purse strings, not the people who live the experience. And the product, whatever it might be, looks more like the desires of the person who holds the budget rather than the desires of those who will ultimately live with it. Mental health inpatients and mental health staff are both trapped in a land of design decisions made without them.
It doesn’t need to be this way.
I spend a lot of time just hanging out with other people who experience mental health difficulties. It’s what I do. There’s a great myth that it’s expensive and difficult to design things with people who experience mental health difficulties rather than for them. It isn’t if that’s what you set out to do from the beginning. Iterative design requires discovery phases, insight surfacing, prototyping, user acceptance testing. That’s how you make things that are people-shaped, not specification-shaped. Hanging out with people is vital. If people trust you to do your job of translating problems and desires into solutions, they’ll talk to you. Listening isn’t performative, it’s practical. People judge whether you listened by what you do next not by how hard you cup your hand to your ear as they speak. Who is listened to is not a practical decision, it’s a political one.
It’s not hard to talk to people
I thought for a long time what it would be most valuable for me to do with this opportunity. I’m not a Ted Talk kind of person. If I was, the classic thing to do now, having set the context of the problem, would be to share my own personal experience and then follow it up with my own marketable ideas about how to solve the problem I’m so passionate about. Instead, what I want to do is let some other people speak.
I asked on twitter for some thoughts and ideas to bring into this room: ‘what was your time in hospital like? What would you have liked?’ Far from asking for the moon on a stick, people’s answers were small, mundane, granular, possible. People gave up little slivers of time to answer. Each one is the starting point for a whole other set of questions and design explorations
In answer to my question @sonicportmirror asked me: “Why do we need inpatient spaces?”
They went on to tell me: “In North Wales the secure wards are built around garden spaces, so on your first day you don’t need to fight for privileges to see the sky. You get told off for running laps around the garden, but not restrained. In London you get restrained for jogging corridors, no gym no garden.”
@AngelBbyDarling told me “Create a comforting sensory landscape where animals, plants, colour and texture are all used to inspire a sense of calm and safety whilst still allowing gentle positive stimulation. Places for people to walk, to sit alone, to write… art, music, cooking & exercise facilities..”
@RRowanOlive told me: “Things I would like: individual control over room temperature. Tends to be either on or off for whole ward and turning a radiator on/off sometimes requires a maintenance company to be called out to access thermostat. I overheat when I panic and this makes it much worse.
“We had many discussions about this when my Trust opened a women’s Psychiatric Intensive Care Unit — if a woman with anorexia is in a room next to a menopausal woman they are likely to have VERY different temperature needs!
“If a trust has mixed wards, at the very least a sitting room in the women’s corridor with hot drinks making facilities and a working tv.
“Windows in all the rooms. Being able to open/close window vents without asking staff for a key (one hospital in my Trust has this and the other doesn’t).
“Accessibility features in *all* the rooms — realistically most trusts aren’t willing to make all rooms fully accessible but things like grab rails can make rooms accessible to more people and are better than nothing. Making sure at least 1 room in women’s area is fully accessible as at the moment in my trust disabled women have to choose which they want met out of gender-related and physical-accessibility-related needs. The fully accessible rooms are “flexi-rooms” outside the single-gender corridors.”
@wheeliepuss told me: “I think lighting is the key to making spaces less institutional. Get rid of the fluorescent lighting; add some warm lights. And have the option of nightlights rather than a torch in your face every hour.”
@suturequeen talked to me about the way things are now: “Too open. I know they need it to a certain extent but as an introvert it was really hard. I’d like those egg-shaped chairs- so you could sort of shut people out but still be visible.”
@RealKHughes responded to me like this: “A client back home once described it to me as “busted ass furniture with busted ass TVs”. With funding being the way it is the world over, I’d hazard a guess most inpatient facilities need a major face-lift!
“Personally, I’d want it to feel like a calming space, or like home. I don’t think people much like the hospital feel of most wards. Medicalisation has creeped into the design process and it’s alienating. Makes people feel even more like a patient than necessary.
“Because of the power of collective memory, people are acutely aware of the asylum, straight jacket past of inpatient psychiatric care. Spaces resembling a hospital space may trigger anxiety (moreso) surrounding their treatment and leave them feeling othered.”
@JudgementalBsC told me: “Privacy , light, & bringing the outside/natural world inside”
@shila_pathar said “people who’ve visited or worked in an inpatient ward have told me: good ventilation is important, especially in summer. Also decor/environment: it’s nicer/ more welcoming to have pictures on the wall. Plants can also be good for similar reasons.”
@judyskt said: “Doors that don’t bang. Good ventilation. Not acres of glass. Looking more like a house”
@Beverleyangel1 said:
“The most primary instinct when you feel vulnerable is to want to be home and safe. Being able to feel ‘at home’ and safe is conducive to healing, but if you are in surroundings that look nothing like a home, and probably closer to a lab, then the basic need is extremely difficult breeding institutionalisation. Reminding you that you are ill or bad. Reminding you that you are not at home with your comforts, that you need to be detained in a non-homely environment because that is what you deserve. You are drugged and observed like an experiment. Lab rats.
“There can be high levels of damage to the furniture and fittings, but i think that the hateful appearance of the environment almost incites hatred towards it which is then acted out.
“There needs to be natural materials, and walls designed to reduce sound. Colour, and diversity too so that not all the rooms are the same. Art by service users, not bland prints of inoffensive scenes. Plants. Outside access. Dimmer switches in all rooms. Cushions.
“Just visiting a friend in a modern secure unit for a few hours made me feel unwell. The plasticky alien-ness of it with no fresh air was stifling. It was all bright, modern and clean, but it felt sickly. Very much a hospital more than a homely space. It would have killed me.
“There are mistakes too. Toilets on a ward keep getting blocked by paper towels. They could install a hand dryer instead. Sanitary disposal bins that contain toxic chemicals being a risk. (They do not need to if emptied daily).
“Control over the temperature and lighting levels and colour in each room to suit the person. Cushions are nice to hug. Built in wardrobes that go to the ceiling rather than the anti ligature sloping tops that remind you of the issue of hanging every time you look at them.
“Furniture from domestic suppliers rather than commercial contractors would help. It is possible to get safe furniture without ligature risks. Even have it built specially? Solid wood lasts longer than veneered composites and can also be repaired.”
Noise. Safety. Comfort. Control. Choice. Home. Keep these tonal words in mind. You’re going to hear them a lot more.
Put the treat back into treatment — MadLove
It has always seemed to me that we are confused deeply about the purpose of inpatient facilities. It’s almost as if we are scared that if we make them too nice people will never leave or will keep coming back to stay. In 2014 artists Hannah Hull and James Leadbitter (better known as The Vacuum Cleaner) embarked on a project they called MadLove, which had the mission statement:
It ain’t no bad thing to need a safe place to go mad. The problem is that a lot of psychiatric hospitals are more punishment than love… they need some Madlove.
Is it possible to go mad in a positive way? How would you create a safe place in which to do so? If you designed your own asylum, what would it be like?
Explaining the project further: “Madlove is not the lunatics taking over the asylum, we are proposing that we should design, build and run the asylum too. This significant mutual care project invites people to share knowledge, experience and openly support and inform each other.
“Through Madlove, we can begin to understand the power relations between patient and staff, lived expert and academic expert, artist and audience, neuro-diverse and neuro-typical… and start making positive change.
It’s time to put the treat back into treatment.”
In 2014 the project carried out a series of research meetings where they collected ideas around the idea of what the asylum should be. They asked questions like ‘How does good care make you feel?’; ‘What does good mental health smell like?’; ‘What does good mental health look like?’; ‘What does good mental health feel like to touch?’; What does good mental health taste like, sound like?’
Using sensual questions they got answers like ‘Fresh cut grass, coffee, sea air, fresh bread, clean air, home cooking’ ‘Trees, colours, Sun, Landscapes’; ‘Sun, sand, hug, animal fur, dogs, cat, fresh bed sheets’; ‘coffee, chocolate, Ice Cream, Red wine’, ‘Sea, birdsong, silence, music, wind’. They got not direct user demands, but user desires, which are far more important in design. How someone wants to feel comes before what they actually want to do. By opening up the realm of the senses, MadLove approaches the question from a completely different angle. If mental health is about how we feel inside of ourselves, our senses and preferences and desires are a way of reaching those interior spaces.
MadLove went on to trial and prototype a number of different ideas based on what they found out from hanging out with people and developing ideas and desires and developed an art installation ‘The Designer Asylum’, a landscape which displayed the principles and ideas that the project had developed along with others who had a stake in making a better asylum.
Madlove continues to work with NHS partners providing research and designs for mental health hospitals. Maybe if you’re still not feeling the possibility of change you could get them to come and shake you up a bit.
But, you may be saying, all this is well and good but our trust, our hospital, our ward lives in the real world of spreadsheets and budgets and deficits. This all sounds lovely, but how am I meant to get this to happen?
‘Don’t let estates and procurement be seperate from design and coproduction’ — Mersey Care
I spoke to Beatrice Fraenkel, Chairman of Mersey Care, about their attempts to put a design approach into action. This has an advantage in that Mersey Care is a version of this future you can go and visit. Clock View is there. Look it up. She guided me through what Mersey Care have done, and are doing, to make a design thinking driven health and care service that don’t let people down and make them settle for second, third or fourth best.
Beatrice explained to me: “The first thing is a very practical understanding of what we own, the second thing is to understand how the services themselves can be supported and housed in an environment which is both appropriate and beautiful and geographically accessible in the way that is financially going to save us money and create a much more enticing environment. We’ve deliberately as a board taken certain decisions which are ones that we feel are the right ones to do and we know we won’t get evidence, measurable evidence, certainly not for even a generation.
“You design your system, your objects, your structures your world, to suit the needs of people using it without making an assumption that because you carry power you know what they actually want. We are trying to understand more and more clearly fro ourselves how to shift the balance of who leads investment into the system environment, that it is understood that it is another tool which is to deliver better and safer care. The gap then is moving across to being clinically and service user led in a way that people understand how to do it. It’s about understanding how the whole environment in which all of us exist impacts on how we feel.”
In designing from scratch their Clock View facility, the objective was to design a space that reduced negative emotion, reduced stress and that would ultimately help Mersey Care to become a zero restraint environment. As Beatrice told me there was recognition of “the need to feel you are in a space that is beautiful, that anybody can go out of doors if they want to. We were able to build in separate bedrooms with ensuite. We had mock up rooms which could be tried out.”
For Beatrice the objective wasn’t just to listen, the objective was to coproduce: “I set up a design board which was made up of service users; clinicians; consultants as well as the nursing; finance; the estates people because they’re the people who tend to say that ‘you can’t do things’ not that you can do things’. What we had to do was see the whole situation investing public money into a new hospital could be spent in a way which supported and aided recovery. We wanted to hear from services users what worked for them; what increased their anxiety; what increased their fear of being in a space. The idea of spending time in a hospital that becomes a substitute for your home because it was a place that made you feel not just at home but safe was really important. The sense that it was a normal place that anybody would want to go to because it was beautiful. We don’t often use the word beauty. But it’s a really important word. It starts before people even get into the building . It starts with what the arrival feels like, what happens as soon as you step across the threshold. You do not come into a reception area and find a barrier. You want the whole experience to be human to human. We took out all the glass barriers. When we redesigned reception it said something. It said ‘we’re not scared of you’.
Beatrice told me about Iris Benson, someone who had experienced both extreme things within herself but also extreme things within inpatient care. She related how Iris had told them “ ‘Every time you put your hand on me to restrain me it makes me worse.” And how Iris sat them down and very clearly explained “ what was happening to her and how from her point of view it was making her worse. It took a huge leap of faith from our commissioners, “Beatrice told me, “to say to our staff ‘let us have a look and see if this will work in a different way. The trust introduced a policy of zero restraint and that is physical and chemical. bit by bit and the evidence is quite staggering not just in term of recovery but staff assaults have gone down which means that not only is it a much happier place but, and this is an unintended consequence, it has saved increasingly over a million pounds a year on our costs. You need continuity of staff with your patients. Iris now does training for our staff. Every new inductions of staff.”
I asked Beatrice about institutional furniture and how it was possible to lead people away from commissioning and buying stuff that looks and feels awful. Said Beatrice “In challenge to somebody who says ‘but it works; I’d say: on whose terms does it work? That’s why that term beauty, a place that feels like home ‘would you have this object in your own home if the answers no, why would you want to put it into one of our spaces.”
I suggested how amazing it would be to go round to someone who sold horrible institutional furnitures house and to find it completely done out in institutional style because they really, really did like it. Wipe clean seats as far as the eye could see… Beatrice suggested that would be ‘a matter of taste. “Manufacturers make cost effectiveness arguments but in clock view we’ve bought furniture that you wouldn’t say was hospital furniture.”
I asked Beatrice what the largest enemy to this approach was. She told me: “People are constantly explaining what needs to happen without explaining how to do it. everyone will agree but they don’t know how to do it. When the leadership is not experienced in how to think very differently, the experiences that people have to draw on are the ones that they’re familiar with.
“None of that should be driven through estates and finance. you need a board who understand that can deliver beauty, cost effectiveness and patient safety evidenced by design thinking approach which is driven from the board.
Procurement people mustn’t be isolated from the design part which is why on my design panel I put everybody together because otherwise, procurement does procurement because that’s the way they’ve always done it. Finance does finance because that’s the way they’ve always done it. And when they’ve never actually been part of an integrated design approach, when they are and they are given the support to do it, it has to be a board supported so that nobody feel like they’re going to get into trouble, it’s achievable. You just have to start it off at the right point.
“About four years ago our estates director at the time bought a building and put services into it which were totally inappropriate because she had not followed the instruction of the board that none of our services must be relocated or buildings bought without the involvement first of all of it being checked and tested by service users. She disregarded that. she’s no longer with us. It matters too much. If she hadn’t made that huge mistake, the evidence of the consequences of it being wrong would not have highlighted how important it is to get it right.”
Something about what Beatrice said about bringing together people who want to make things better -the utopians- with the people who know how to make things happen -the realists- under an understanding that means everyone was pulling in the same direction, made me think of something @RRowanOlive said to me on twitter: “An observation from giving input to ward design — get someone kind & motivated from Estates to meet regularly with service users during planning process. Someone came to our women’s SU group meetings several times and acted on our feedback and it was so heartening.
“A few things he initially thought wouldn’t be possible (like individual temperature control and dimmer switches for lights) then listened to our reasoning, went away & figured it out, came back and told us. Every trust needs a Malcolm from Estates ❤️”
Designing experiences is designing futures
Both Beatrice and the people who shared their thoughts with me on twitter were speaking the same language, the language of finding a way of making ideas like beauty and comfort and homeliness actually real by using the mundane tools of funding, procurement and banging stuff with a hammer.
Finding ways to bring the people who actually have the problems together with people who are clever at solving problems is the key. The thing is, the future is only there if you know where to begin looking for it. Dreaming is not a ridiculous activity that is about escape from the present. Dreaming about the ways in which inpatient spaces might be better is a way of trying on different futures for size.
The advantage of Mersey Care’s stab at the future is that you can go and see it and feel it and experience it. In you don’t like it, then you can learn from it and get on with making your own better version of it.
The advantage of MadLove’s stab at the future is that it hasn’t arrived yet, it’s still taking shape. You can still visit it but it hasn’t arrived quite yet.
The advantage of the futures expressed by the people who I spoke to on twitter is that they are rooted so strongly in experience of the present they make it possible to see the terms of the problems that might be solved so clearly.
Think back to those tonal words, to the setting of direction. If this is a journey into a future that isn’t awful, our compass points are simple: home, comfort, control, temperature, choice, beauty. If you find yourself in meeting where others barely stifle a derisive titter when they hear words like that then that’s a sign you have to start having different meetings.
You aren’t just designing a space, you’re designing an experience. Usually we think of designing experiences as something that will last forever for someone. A holiday, a hotel stay, a theme park ride. The reality is, we are already making experiences that last forever for people but not as anything they look back upon fondly.
If I can do it, you can do it too
If you’re still baffled as to how you might get started on this journey toward remaking inpatient spaces, the first thing to do is to look around you. Who are your allies? Who do you know who can make things happen? Who are your enemies who believe nothing can change?
In writing this talk I put my money where my mouth was: I talked to people, I looked for the best examples of what’s possible I could find. I checked with people that I wasn’t talking out of my arse. I asked people’s permission to use and build upon their ideas, observations and experiences.
But most importantly, I decided what was important and where I wanted to get to. I knew that I wanted other people to speak through me to bring you ideas and observations. If I’d never thought about that, and if Design in Mental Health hadn’t asked me to speak then that wouldn’t have happened.
If I, an utter herbert, can begin a design process that delivers something os use and hopefully a tiny bit of beauty or pleasure then you can, too.
Because until we do; all we’re doing is making sure that people having the worst time of their lives are having to stay in places that make that worst day even worse. Under the guise of helping people we’re just kicking them when they’re down. When we accept low standards and horrible things for inpatient care, we tell people that they do not matter and that we do not care about them. And that is just neglect and we should be ashamed.
@markoneinfour
