Guest post by Leah Ryz, Executive Interim Manager / Problem-Solver / UX SME
I’d been very ill. I was very ill. A side of me that I didn’t know existed reared its ugly head, as Senior Medic after Senior Medic discredited each other at my bedside, changed direction and approach by the minute until Doctor B came along, and something in me just snapped. They say pain can do funny things to a person.
I’d never been in hospital for a great length of time before. In fact, I had never been this ill. But it has been 2 months since it all happened, and I’m now well enough to explore my experiences, and share them.
If you work in User Experience (UX) or Customer Experience (CX) or even Patient Experience (PX) my story may be of some interest to you. If it’s not, this has still been a beneficial exercise for me, so I appreciate your time.
1. My Expectations (My Mental Model)
I have always been a fan of the NHS and have been very much angered by its demise. I don’t want to get political here, but I am sure you can read between the lines. However, I had been in contact with several Doctors over that week, and everyone had been very kind. My expectations regarding the level of care I was to receive were quite high.
2. The Reality (The Conceptual Model)
When I realised that I was to be admitted, I felt relieved to be getting to the bottom of the excruciating pain at the top of my stomach. The morning after my first night in hospital, I awoke to a breakfast that met with my dietary requirements, and I couldn’t fault the service I was receiving by the midwives. The fact was, I needed nursing, and they weren’t nurses, but you see, no-one wanted to touch a pregnant lady in pain, let alone a pregnant lady with twins. So though my stay wasn’t pregnancy related, I was plonked on a ward, full of women who were just about to go into the advanced stages of labour, or were having complications. It was a lot of things, but most definitely loud. However, everyone was going above and beyond to look after me.
Initially, I was pleased. I spent the first few days uploading pictures of myself onto my Facebook . Pictures of me on an drip, with a beautiful view from my hospital bed. Half looking for sympathy, half genuinely praising the NHS service I was receiving, the pictures had the desired impact. Attention-seeking-me.
I praised the midwives and a couple of Registrars. But mainly the people on the ground, interacting with several patients on a day-to-night basis, who did everything from hug me when I was inconsolable with the pain, to changing my bed for me, even when I insisted I could do it myself.
2.1 The Senior Medic(s) (Lack of Strategy and Consensus)
So they found the problem and decided I needed to see a surgeon. There was a huge delay in getting someone to see me. I wasn’t on the right ward and I think that this added to the delay.
When I finally saw someone, they concluded that I needed surgery. The next day, that plan changed. The day after that, it was surgery. Then I was put on antibiotics for one day only. Then I was taken off antibiotics. Then it was surgery again, and the next day, that plan was yet again changed. I saw someone different each day and began to feel extremely concerned. Did anyone know what the plan was? I wondered whether they actually talked to each other, for they seemed to be very confused and in disagreement. I lay on the bed, unable to eat, drink, move or feel my babies kicking as a result of the pain I was in. In front of me, they argued about what to do with me.
“Statistically, this could happen, but we know that this could happen instead…”
“The person who told her we should do XYZ obviously didn’t know what they are talking about…”
2.3 Data = Human Behaviour
“Hello…..hello…..HELLO?” Inside, I’m screaming. “I am here, I am in front of you” I’m thinking. “Ok, Leah, these guys are the experts and they know what they are doing” I’m trying to remain calm. But actually, no-one seemed to have a clue. I’m mentally thrown back to my earlier keynote in Latvia, how I talked about real people behind the data. How I spoke out about the dangers of solely relying on numbers, when real thoughts, feelings and behaviour exist behind all of those graphs.
I’m thinking about Nielson’s Usability Principle: Match Between System and Real World:
“The system should speak the user’s language, with words, phrases and concepts familiar to the user, rather than system-oriented terms”.
I’m thinking how confusing it is for a user to try to interpret an acronym or an error message, unsure of what to do next. As I lie on my bed, in a morphine-infused state, this confusion suddenly turns to anxiety, and I find myself feeling more and more upset each time they leave my bedside. This isn’t an eCommerce site we’re trying to improve. This is me. This isn’t an app that we’re trying to get to market. This is me. This is my health, and no-one seems to understand what on earth they are going to do about it.
2.4 Doctor B (The Unreasonable Stakeholder)
Hannah, (not her real name) in the bed opposite me, was about to be discharged. She had been admitted because her waters had broken at 26 weeks. We had been taking it in turns to comfort each other, for neither of us had asked for any of this. Yet each time the Gastro Intestinal team left my bedside, she’d come over and tell me how confused she was, listening to them. In her view, it was no wonder why I was so upset and anxious.
Hannah had been sent home by the time I had the unfortunate experience of meeting Doctor B.
So, in he waltzes, flanked by his Junior Doctors. I remember him from a few months back, where he insisted that I should have a scan as “routine”.
I recalled how I forced myself to remain lying on my back at his request and feeling quite sick (no-one knew I had this gallbladder issue at that time). When I told him that I felt very sick, he said “Now listen young lady, if you tell yourself you won’t be sick, you won’t be”. He didn’t speak to me, just about me, as a Junior Doctor proceeded to scan me. It went on for ages. Doctor B then told me that everything was just hunky-dory and sent me on my way home. I was left wondering why I had an unplanned scan, when I’d only just had one a day or so before. Though as I leave, I hear him critiquing the Junior Doctor. Apparently, she’d never scanned anyone with twins before, so I was “a great opportunity for her” but it was clear that Doctor B didn’t think that she did that well in her attempt to scan me…
On the way home, I recall calling my Mum, and we both agreed that it was “a bit off”. I also recall making a mental note to avoid him, if at all possible.
Yet, there I lay, at my most vulnerable, several months later, and Doctor B was staring across me, while someone else updated him. “Leah doesn’t feel like she has had a very positive experience here”. Doctor B’s gaze shifts and focuses on me. His eyes narrow. She goes on. “She feels that some of her experiences have been inconsistent”.
I very quickly explain that I am happy with his team and the team of midwives (Doctor B is an Obstetrician) but that my experiences with the Gastro Intestinal team have been alarming, because I’m told something different each day.
2.5 Doctor B (Unreasonable Stakeholder: not listening to the User)
“No they haven’t” Doctor B states. “Your experiences here have been second-to-none, and have been led by an extremely experienced team”. My mouth opens and then closes. I try again. I try to explain that I’m not angry at anyone, let alone his team and with the greatest of respect, how could he possibly comment on how I feel? I feel how I feel, and he hasn’t been here to witness any of it. Doctor B disagrees some more. He tells me that it’s simply untrue, that I have had fantastic care. I try again.(I am wondering why he is so bothered about my complaint regarding a team that he isn’t even responsible for).
He point blank tells me I am wrong. He actually uses those words. I am astounded at this treatment and am telling him that he has no right to tell me what I do and don’t feel. That I cannot understand why he is behaving like this, and does he remember me? He’s the man that told me that the nausea I was experiencing was all in my head, even though several months later, it transpired that there was a very valid reason as to why I filled two sick bowls any time a Sonographer scanned me.
The midwife sitting on my bed is trying to placate me with “I think what Doctor B was trying to say is….” but nothing is going in. However, I notice the Junior Doctor at Doctor B’s side and she’s nodding as I speak. She’s listening. She gets it, I can tell by looking at her eyes. But she can’t/won’t speak up. Why won’t she speak up? This makes me feel sad.
I’m managing to remain calm enough to tell him that I am a professional woman, not suffering from any mental health problems, yet his sheer inability to recognise that I am entitled to feel how I feel has made me feel extremely vulnerable and my thoughts and fears unjust.
At that moment, Doctor B could have apologised for unintentionally making me feel that way. He could have said that whilst he feels the level of care I have received has been exceptional, he appreciates that I may feel differently.
No chance.
Theory of Mind: “….to understand that others have beliefs, desires, intentions, and perspectives that are different from one’s own”.
I am realising that Doctor B lacks some Theory of Mind.
He is still standing over me, arms crossed. He only nods to agree that he does remember me but doesn’t respond in any other way. He almost looks patronising, like he just needs to wait for me to finish my speech and then he’ll continue talking at me, about me but not to me. However, he decides to speak a little more ‘Medic’ to his side-kick, and then leaves.
2.6. Doctor M (Change of Tone of Voice needed)
Doctor M comes to see me two hours later. His opening line is “I understand you have seen Doctor B, who might I say, is an incredibly gifted and well respected Doctor on this ward”.
The rest isn’t worth writing about. By then, I’d succumbed to the fact that they were clearly all in cahoots with each other, and would probably discuss my lunacy over a nice game of golf that very weekend.
He told me that no-one could agree on the right sort of treatment at this time, and sent me home with bags of morphine, and much more. The plan? Well, if I was to fall ill again, it would be ambulance, assessment and more of the same (or “SOS” as they’ve written in my notes). I remember as he pulled back my curtain to leave, his parting words were “Good Luck, Leah, it’s not going to be easy”. I now realise that he was referring to the fact that they can’t operate while I am pregnant, however these guys need some serious help with their Content Strategy.
3. At Home (The Post Mortem)
No, I didn’t die, but on every project or experience that goes terribly wrong, I think it’s important try to look back and dissect what happened. Forgive me, it is a buzz word, but lots of people describe this process as carrying out a Post Mortem. So as I lay in bed, I couldn’t help myself but pull it all apart. Was it me? Had I overreacted? In my day job, I preach about not ever blaming the user. It’s never the fault of the user. However, was this different? Could I even compare a Patient Experience with a User Experience or Customer Experience? Could I have done something to have changed things?
I was angry, livid in fact. I looked into speaking to The Patient Advice and Liaison Service (PALS) but couldn’t get through, each time I tried. I was also concerned about complaining about the very person who may, by chance, be delivering my babies.
I researched Doctor B furiously, and discovered he had some sort of qualification in Positive Thinking. How ironic, I thought. (I know now that this qualification was likely to have been completed out of necessity – for an appraisal).
4. To Conclude
If you work in UX or CX, I doubt I need to help you draw parallels. I’m not going to tell you what I have learnt from this, or what you, as a Product Owner or Stakeholder need to take from this. It should be abundantly clear. However, writing out my story has been extremely cathartic for me, and I’m actually going to send it to PALS at some point.
Someone very close to me, described the Trust I am writing about as “the very best and worst of the NHS”. I think that I discovered more of the worst than the best, but I don’t feel as anxious about seeing Doctor B in approximately 6 weeks time, though I have taken all reasonable steps to avoid him. I have evaluated what has happened, researched the experiences of other patients who have been under the care of this Trust and I realise I am not alone, nor was my reaction to his care unjustified. For me, that is a huge weight lifted off my shoulders.
It wasn’t my fault.
We do tend to blame ourselves an awful lot when things like this happen. This in itself is a great shame, considering that often, it’s the fault of the system that we’ve experienced or interacted with. Or the fault of those who’ve designed it, neglected or even a part of it.
This article was first posted on LinkedIn Pulse. It is republished with the permission of the author.