As a patient on a hospital ward….
It’s difficult to sleep.
You are not in your own bed,
You are not in your own home.
In pain, or discomfort, you may be hooked up to equipment and machines and monitored throughout the night.
There is an unpleasant pervasive smell.
It is noisy, stuffy and there are people constantly moving about.
There is no peace.
Hospitals are strange places.
People can develop irrational fears about going to hospital – even to enter the space.
Nosocomophobia is a very real phobia..
Associations with pain, death, trauma and the first hint of disinfectant can send some people into a blind panic. A hospital environment goes deep, often negatively, into the psyche.
But if you become seriously ill this where you need to be.
As a patient you enter hospital with some sort of health condition. With that there may be the physical discomfort and emotional distress of not knowing exactly what it is… how long it has been there…and if they can they fix it.
You have to trust: that the medics know what they are doing; that the hospital is fully resourced to cope; and your illness can be treated before it is too late.
A Hospital Is A World Apart.
Because so many real life stories begin and end in hospitals they are places firmly associated with life and death.
In hospital you are removed from your everyday life, your life at home and life as you know it.
As a patient you enter a world that is far outside of your comfort zone.
This is a place where the language, rules and environment are not what you are used to. A place where you are not the one in control.
A hospital experience is deeply personal.
In hospital you have more time to think about your illness, your treatment and the environment in which you find yourself.
One patient’s story (described so vividly) explains how, emerging in great pain from serious surgery and unable to move, he had to figure out where he was.
First: he had to re-establish his sense of his body and self.
He woke to find himself in a space with no locus or orientation – and with no way of knowing exactly where he lay.
From the sounds made by the cleaner as she moved about the room he could work out the location of the door to the room and the bathroom. This was the only way he could made sense of the space.
Piecing together these aural clues from his environment reassured him about where his body was – where he was. Understanding the geography of the room, the floor level, location of the building was a first step to his recovery.
Gradually as his health improved he was able to look out the window at the view outside.
It turned out to be of a place he knew well.
More than just a window and a view, this location prompted rich memories of his past experiences. When friends came to visit him in hospital they would talk about all the different places they could see, remembering old times.
The view from my window was like some sort of massive visual diary.
Once he understood exactly where he was he felt more situated and grounded: his body was in a room, in a hospital, next to a major train station, in London. Right.
Through his lived experience the world outside the building was very familiar to him – much more so than the world inside.
For over ten weeks he ‘lived’ in that one room.
Because he had been so very, very, ill he went from a point of not being able to open his eyes, drifting in a dream-like state and feeling vulnerable, to full spatial consciousness, awareness and increased levels of mobility.
The different stages of his recovery were inextricably connected to the space in that room.
Most of us will never know what it is to lie in one place day in day out.
Even the doctors and nurses have no real idea what it is like.
For each individual that experience may be very different.
Unable to move, this one patient reveals how he endured an unusually close and intimate contact with his hospital bed. The sounds it made, the rhythms and beeps, were to him indistinguishable from the space in which he lay – or as much of it as he could see. He was constantly hearing and feeling sounds and vibrations through his body and became confused about the margins between his body, the bed and the space. That is: where the sounds came from and what was making the sounds.
Only someone who is so ill, and has lain on this type of bed for so long, would ever know what that experience is like. For him, it challenged his sense of space, his mind and self.
There was nothing in this hospital room to visually sustain, inform or mentally excite him.
By contrast, at home in his own bedroom, he relished the simple visual delights of the space. The joyful play of sunlight bouncing into the room and being surrounded by the textures, colours and the familiarity of his own possessions.
In his hospital room there was nothing like that.
Apart from the window there was little visual interest. A clock. The number of the floor level.
Gradually, with the support from medics and physiotherapists his physical mobility and health improved. What he remembers most is how his friends and family – and the view outside – helped his mental health.
Daily contact with people that he knew so well helped to make that hospital room a less alien environment. They helped him to be himself – again.
When visitors come to visit their loved ones in hospital they negotiate restricted visiting times, full carparks and endless corridors. They carry a box of grapes, a bottle of juice, some magazines. Most of all they bring ‘news’ from the outside world, of family and friends to help break up the monotony, the boredom and the sameness of the day.
Contact with people – who are not part of the hospital system – helps prevent patient isolation and institutionalisation. Visitors enable the patient maintain a sense of their place in the world outside.
You enter a hospital with an illness, life experiences and your own particular physical needs. As a patient you have to adjust to a strange, unfamiliar setting. Knowing more about how that experience affects individuals will go some way to prevent potential negative or damaging experiences. It’s not just a matter of the ‘do’s’ and ‘the don’ts’ but recognising how data informs a deeper knowledge, a better designed space and a better service.
In a crisis hit NHS the strain on resources and service hits hard across the board.
Some hospitals are in a truly perilous state.
Very few hospitals are spanking new or designed to meet contemporary needs. Most have evolved on sites with buildings designed many decades ago – if not longer.
At what point is a hospital not fit for purpose?
At what point is it a danger for staff and patients to even be there?
To attempt to battle on and deliver a service in an environment that is outdated, depressing or dangerous takes it toll on patients and staff alike.
Patient treatment is not just about delivery of a service, it is also how that delivery is perceived and received. The NHS recognise that if the quality of their service is to improve they need to listen to individual stories, to real-life experiences.
How was it for the patient?
How was it for staff?
Experience Based Design is concerned with the service delivery and experience. It shifts the focus from a patient’s medical treatment to a patient’s experience of that service and their emotional journey throughout. It examines where the pain points lie for staff in delivering a quality service – or as good as service as possible under the circumstances.
Every patient’s journey is an authentic experience.
When patients articulate their experience they tell their story – as it was for them.
Enabling a patient to tell their story places a value on what is a uniquely personal experience. This is not generalised data. It requires listening to what an individual says…and thinks… and feels.
Storytelling is simply a personal account told in someone’s own words, expressed in their own way. Ultimately, EBD is about developing actionable insights.
In Experience Based Design it’s often the little things that are most telling.
The four steps of EBD are:
- Capture the Experience
- Understand The Experience
- Improve The Experience
- Measure The Improvement
One criticism I have of the EBD Toolkit is that it fails to recognise the impact of environment. That is: the way that people relate to spaces – or not – can create a lasting memory that can be good or bad.
A hospital is place-based. It is a real world, real time experience. Evaluating the delivery of a service is not a simple transaction of what people say and do and behave – it is also where it happens.
While UX designers are now viewed as essential in the delivery and improvement of digital services. In service design spatial/interior designers/ researchers are very well placed to observe, and understand exactly where and how patients encounter that delivery and to evaluate that space.
Your experience of space – it matters.
When I think of a NHS hospital it’s … hot windowless rooms… draughty corridors…. confusing signage. There will be: hard chairs…miles of lineoleum… long waits…bright lights… blue curtains.. noisy TV’s…. the smell of disinfectant…and the intense boredom.
Of course, you notice how clean a space is – and if the toilets work.
And, if what you need to say to medical staff can be heard by others. If the space is crowded and there is nowhere to sit. That all adds to your frustration, anxiety and nervousness.
A slight negative unease quickly leads to the distinct sense that you don’t matter.
With care and thought in the design of the ‘customer journey’ people are likely to be more positive about their experience of being there – or, of having to be there.
In a public hospital you may be on a ward with random people of mixed ages, backgrounds and health. Some may be very ill indeed, or dying. This is not something most of us are used to. It can be stressful and emotional. It can make the patient experience a lot more uncomfortable.
A hospital stay can also be intensely boring.
You have nothing to do. You read, watch TV, wait for visitors, meal times and sleep. In hospital you have no sense of purpose – other than to get better and allowed to leave.
And, of course on every ward there are some bedspaces that are positioned better than others. As a patient in an NHS ward you don’t get a choice in this.
The allocation of spaces and movement of patients is strictly controlled by the staff. Their system is based on monitoring patients’ needs and the severity of their illnesses and have to juggle the needs of longterm and temporary occupants.
You may end up by the door, the window- or next to the person who shouts all night.
Bed-bound, we are at our most vulnerable.
As a patient you expect to be prodded, poked, tested, monitored and discussed – almost like you are not there. Random people come to check on you, to look at your wound and stats. They may be consultants and medical students… or anyone in a uniform.
In hospital you have to suspend all sense of personal modesty, ‘sense of self’ and dignity.
To be washed and toileted by strangers… it’s something that just has to be done. We mentally distance ourselves from the whole experience and pretend it is not really happening. We create a mental space where we temporarily suspend our sense of self, just so we can be intimately cared for by someone we will never see again.
The staff have a job to do and when it comes down to it you are just one part of it.
They are rushing around, busy, often no time to eat, or take bathroom breaks. They come, they go. There are new faces. New names. They don’t know you.
Medical staff are concerned with your health and well being.
But, you are essentially an animate body to be fixed and sent home – away from this place. Hospital staff are expected to do their job efficiently and routinely. Anything else is a bonus.
A good bed-side manner, warmth, personality, humour and kindness makes a huge difference to patient morale. In such an alien environment it can be the very thing that makes a hospital stay comfortable and pleasant – or tolerable.
Unless you suffer from Munchausen Syndrome nobody ever wants to go to hospital.
But…hospitals are the centre of medical expertise, experience, help and support. We think of a hospital as a place of miracles; somewhere to rid us of pain, where we renew our failing bodies.
We enter broken and leave as good as new – or near enough.
Hospitals are a bit like transport hubs.
Every day vast numbers of people move through the space. There’s a constant turnover.
People need to know when and where to go and how to get there. From peak times to out of hours it is always open. Through strikes, electrical faults, war and pandemics, hospitals keep going no matter what.
The hospital controls the patient’s experience.
The best hospitals have evolved from best practice and learn from past experiences. As vast organisations they enforce certain rules to avoid potential litigation. That is why, to prevent falls, it is often easier for them to put walking patients into wheelchairs and to limit where they can go.
The hospital sets when the lights go on, the lights go off, when you sleep (or try to) when you see visitors and how many, and when – and what – you eat and drink. Even with your personal preferences and needs ( gluten-free, vegan, liquids only) you are just one of many patients they have to manage as best they can.
This is an interior space designed to be mopped and wiped in the face of superbugs and bacteria, and subject to the constant spills and splashes of human excretions and bodily fluids.
Hygiene, cleanliness and easy-care interiors are at the heart of the design of every hospital. Wherever bugs may lurk patients are vulnerable.
Hospitals aim to be a germ-free, super-clean spaces. Design-wise, that means it is an interior environment with washable, durable surfaces, bright lighting and quite often with windows that don’t open.
To be clear: a hospital isn’t a hotel and the staff are not there to ‘wait’ on your every need.
It is not designed as a luxurious space.
It is not designed to be homely.
But, there are always ways to improve on what currently exists. Children’s hospitals are ‘allowed’ to be more playful and colourful, but a 4 year old has a different view of the world than a 15 year old.
When Can I Go Home?
In hospital you think about home all the time; about getting home and being able to manage at home.
‘Home’ is the Holy Grail.
But, ‘The Hospital’ also represents ‘The State’ and as such has a responsibility to evaluate your ability to look after yourself ‘at home’.
They decide if it safe for you to return home. A hospital stay is often a gateway to a new life in care.
You may not be allowed to return to live in your own home.
Elderly people in particular may find they have to move into residential care putting behind the life they knew; their neighbourhood, street, home and most of their belongings.
To leave a hospital environment and return home to the world you left behind is surely the greatest measure of medical success- and personal relief.
For most of us the fear is that when we get home it may mean a compromised way of living- ramps, wheelchair, oxygen, nightly IV fluids, dialysis.
But it is always worth it.
The home that we love may need some adaptations such as a grab rails, hoists, walk-in shower, a hospital bed downstairs. We may need to develop new mental and physical coping mechanisms, just so that we are able to cope, or move about.
Whenever a family member suffers life-changing injuries the dynamics of family home is never the same. A requirement for 24 hour medical care transforms an home to a half-way hospital involving everyone who lives there.
For patients who spend many months in hospital the concept of returning home must seem like a distant and longed-for dream.
Home is where the real recovery begins.
To follow on from one patient’s personal story, ‘going home’ was a re-discovery of what it means to be ‘at home’ – and everything that home has to offer that the hospital does not.
For him, it was the little things that stood out.
Like being able to take a bath for the first time in months. Experiencing the joy of being submerged in water, feeling the heat and sensation of floating, being clean independent from nursing staff.
After so, after months of bedbaths this was heaven.
Being at home gave him a new found ‘purpose’ and usefulness.
Helping to prepare vegetables for dinner meant he had ‘something’ to do. He could make a difference. He no longer had to be just a ‘compliant patient’. Now, he was actively engaged and involved in the household; an independent, valued, free-thinking individual in his own space.
Returning home gave him a new-found appreciation of… just about everything
There was the casual contact, chat and company of family, fitting in with their daily life and everyday routine. It was all so different from hospital where time is organised for efficiency, regularity and order and where every day runs a certain way. When you are at home you have the freedom to make your own choices and decisions about what to do – and when and where.
Initially, when moving around he used the walls and furniture to steady himself. But gradually, he could see improvement in his stability and move more fluidly, more easily.
In scale and layout his home was very different from the hospital. The walls are closer, there is more furniture to hold on to. He found it easier to get around and he had more reason to move.
Everything at home meant something to him… his own artwork… the garden.
His appreciation for all of these things was clearly intensified by the experience of having been so long in a place to which he had no personal attachment.
There were the remembered sensual delights of savouring fresh coffee, and feeling the cold wind on his face, or just sitting quietly and smelling the wafting aroma of burning incense.
The simple joys became again a part of his everyday world of being at home.
Becoming a hospital patient is not an everyday experience.
When you go into hospital you have to adapt to the environment. But, when you come home you go through process of re-adapting.
You see your ‘home’ in a different way. Not quite with the objective eye of an occupational therapist, but with a new awareness of your current physical abilities tied to the emotional history and memories of the place that is your home.
Home and hospital are environments that are miles apart.
Returning home from many months in the sanitised, controlled environment of a hospital must be almost like returning from outer space, or a far distant land.
From sensory deprivation to sensory overload. Returning to a normal life – or at least life with normality – is a transformative experience.
As an ex-patient he developed a wide-eyed appreciation for all the little things that add such variety and pleasure to his everyday world. That is: all the taken for granted nuanced and subtle physical, visual and expressive experiences that are typically missing from a hospital environment.
He could see, value and enjoy his home as a space where he belongs- emotionally and physically.
He recognised ‘home’ as the only place in the world where he lives with experiences that are essential, deep and rich.