I am Not a Number: A Truly Awful User Experience

A week on, and I’m still numb and still very much in disbelief over losing my Mum so suddenly last Wednesday. While events of that day are still fresh, I want to talk about some of the things that negatively added to an already godawful day – the worst day of my life by far.

Some precursors. What I am about to say isn’t “NHS” bashing. I want to make that very clear. Everything that could have been thrown to help Mum, truly was. Also, when I was born, I was left with facial scarring due to the hurried and panicked way the doctors delivered me. I had the opportunity to sue the NHS for a significant sum of money up to the age of 21, I didn’t. Mum’s words rang in my ears “If someone you love in the future needs critical care, and you feel like you took money away that could have saved them, don’t do it. You’ll forever feel guilty, even if it does come from a separate pot, and even if other people do it. It doesn’t make it right”. Mum was also a nurse.

I won’t go through the events of last Wednesday, but what I will tell you is that we were put into a private side room in A&E, with a clear view to the door where Mum was, and we were being updated every 20 minutes by a consultant who was working on trying to save her. He came in twice, twice with the same news, “I’m sorry – it does not look good”. The third person to walk through the door a further 10 minutes later was a nurse. A warm, kind and friendly nurse who quietly said “Can I please move you to somewhere more private?”. I exchanged a glance with Dad and we knew what was coming. Why did we have to move though? In the short time we’d been in the room in A&E, we’d made it our fortress, we’d become comfortable with our surroundings, why did we have to move? We had to then walk, what felt like forever, to a “family room” where upon walking in, if you haven’t sussed what you’re going to hear already, there’s boxes of tissues on the table, berevement counselling posters on the wall, and a telephone in a prominent place. We were then left alone with the promise of a consultant coming shortly to speak to us. As the nurse left, I begged her to tell me and put me out of my misery, she looked me in the eyes and said “I’ll just get the consultant”.

The consultant that delivered the news didn’t have a particularly warm bedside manner, I have my own issues with what was said, the way she said it and so forth, but my Dad doesn’t want me to voice those, since when he was in hospital himself, she was the one that saw the severity of his situation and got him the help he needed – “Just because she didn’t say it very nicely, doesn’t mean she’s not bloody good at her job, Sarah”. Fair enough, but I take umbrage over anything in that situation that made me feel like a number, a case, a fact of hospital life. With both parents having worked in hospitals (infact, it’s where they met) both have voiced how sometimes you have to emotionally detach from situations, otherwise you’ll never get through the day. I understand that but there are things that the hospital itself can do to not make it feel like a conveyor belt of life.

There was one nurse, Dani – who we were handed over to after we’d heard the news, she was amazing, around my age and couldn’t do enough for us. The one thing I was’t prepared for were all the questions, emotional questions about really important things, of which you’re constantly trying to second guess what the person you have lost would answer, when you’re not in a fit state to be answering them yourself. Dani helped guide and provide gentle answers, she helped me to decide to remove Mums jewellery and take it home with me, for example, after I explained that I felt like a vulture and wasn’t comfortable with taking things from her at this early stage.

We were then handed back to the consultant who told us the news, and again, I was jilted back into the hospital system being churned out the other side and being made to feel like they needed the room we were in. My Dad and I were handed two booklets, the one pictured below.

After getting home and having a mad rush to phone family members because someone had already posted the news to Facebook, I sat down to read some of the book. The first paragraph made my blood boil upon seeing a blank space for the name of the nurse who had taken care of us.

Why put something there that allows for failure and makes me feel like a number? In an ideal world I’d want a list of everyone who helped to treat Mum, the paramedics, the consultants, the nurses – I’d want to send them something to say thank you for what they did, or if I had an issue I’d want to be able to address them by name. Instead we get a bog-standard booklet that hasn’t been filled out properly, twice, and get ushered to start wrapping things up to go. The “user experience” so to speak, of the process you go through when you lose someone in hospital, is messed up. Don’t move us to another room, don’t make me wait in the other room surrounded by clues as to what news is coming, don’t give me booklets that make me feel like a number at my lowest point. Make me feel like my Mum is important to you, as important as she was to me and my family, not that she just becomes another statistic from the 3rd of October 2012. Then, when you do want to get news about your loved one, you read a paragraph in said “booklet” below. Not on.

Yesterday, my dress arrived for the funeral. I opened the package to find a notelet ontop.

For a dress? A bloody dress. Say no more.

  • Rachel

    I’m so sorry to hear how bad an experience you had there, on top of everything else you were trying to deal with. I can’t imagine what you’re going through or how you feel but I hope that the kindness I’ve seen from others towards you is helping somewhat. xx

  • Mat

    Firstly, I’m sorry for your loss. My partner who is also a Doctor working in the hospitals, also lost her mum a few years ago.

    I hear a lot of stories from her about the going’s on in hospital. I have to say i wouldn’t want to bash the NHS, but it’s much like web design. You can end up with a doctor or consultant who perhaps doesn’t really have a bedside manner at all. It doesn’t mean necessarily that they are bad doctors, however I’ve hard of plenty of bad one. It’s almost pot luck.

    One problem i think exists is that the NHS is being forced to try run like a business by our government, which unfortunately just doesn’t work. It’s all about numbers and money. Managers govern the goings on, people who dont have medical degrees and dont face situations like yours. Instead tell staff to hurry things along. My partner feels strongly about bedside manner, after losing her own mother, she has a more empathetic side when dealing with telling patients they’ve lost a loved one. I fear it’s often down to just hoping you get the right doctor who can spend time to make you feel valued. From what i hear, doctors are so shorted staffed and overworked, often patients suffer.

    You & your family are not numbers, and you definitely deserve the right treatment at such a heart breaking moment.

    I hope you live strong.

  • My thoughts and prayers are with you at this difficult time Sarah. I know how that must have felt.

    My heart warms for you, take care x

  • Sorry to hear about your bad experience – what you describe is a system that is trying not to treat people like numbers but is stretched to breaking point. I remember when my Dad died – a relative told me on my arrival at the hospital and I walked in and to his bedside with nobody alerting me or stopping me at all. If I hadn’t been told already, that would have been as bad as it gets.

    Oh, and there was the (after the event) hilarious moment when I’d been taken into hospital with severe pains, told by a consultant that he thought I had something serious (I forget what he said – I remember it as pancreatisis but it was probably something else) that required tubes down the throat and all that – which I heard as ‘you’re probably going to die’. He walked back sixty seconds later and said ‘oh, I’ve run the test and it isn’t that’. And all I could think about was what would ever induce you to say that to someone when all you had to do was wait for sixty seconds to know for sure.

    I admire you for never having sued over the bungled birth. I hate all the adverts trying to incite people to see every accident as something that must be someones fault and for which you can screw money out of them. Fear of lawsuits is a paralysing thing in the US that is starting to invade here more and more. Your mum gave very wise advice. Sorry for your loss.

  • I’m so so sorry for your loss- I’m brand new to your blog, but I just wanted to say that despite not really knowing a great deal about you, this post has still really had a big effect on me.

    Best wishes at this rough time.

  • renata

    Hey Sarah, im really sorry to hear all you went through on that tragic day..its the worst thing to have to deal with…try to take confort from all the kind words that people have posted to you and all the memories that people have of mum, she truly was one in a million xxx

  • My Mum worked in hospitals for a long time, she’s now retired. The processes in place are often created by consultants who have no idea about healthcare, are worked out after interviewing the wrong staff, and are meted out by people who, even at management level, have no medical qualifications and no idea of how things really run.

    The NHS is a mess, but that does not detract from the primary care staff who are usually doing their very best with difficult processes that don’t make sense. NHS bashing is fine, but it needs to bash the right people. The staff responsible for the crap in the system are usually not the people you meet at hospitals. They’re all hiding somewhere else.

    Sorry for your loss, best wishes.

  • Hi Sarah,
    My feelings go out to you. I sadly lost my mum earlier this year after a relatively short spell in hospital. I had a similar experience of being fobbed off to ‘the consultant’ who was far too busy and made both myself and my dad feel like just a number. While the nursing staff did their best to care for my mum they were understaffed. We found ourselves getting little information or the information that we did get contradicted. A day before my mum passed away we got a call to say she was being moved some 20+ miles away. You can imagine our confusion but we both went down to see her and were pleased to discover that the NHS home she had been transferred to had staff dedicated to caring for mum and we left content that this was the best thing. Sadly the following morning mum passed away, not on her own but with people who really cared for her as a person not a number – this would not have been the case if she’d stayed at hospital. While I won’t go into my feelings about the NHS hospital or the way they treated her prior to beng moved, or the move itself, I agree with you Sarah – it doesn’t take a lot to make people who find themselves in this situation feel more at ease and less of a statistic. It’s the little things that count! Like putting a name in a book – anything! I would like to think that they’ll learn the value of this approach and see it can still be achieved as well as ‘running a business’. Paul

  • I typed and deleted so many things in the past few minutes. The only thing worth posting is that I’m really sorry for your loss, Sarah. My thoughts are with you.

  • really sorry to hear about your loss, all the best for you and your family

  • Pingback: User Experience – The surface, and the dark deep « Lady Azal ~ User Experience Expert()

  • Roger

    I know I can’t say anything to help, but I just wanted you to know that you and your dad are still in my thoughts every day. I wish I was there to be able to do something in person. I might be visiting next July, so hopefully I’ll see you then.

  • Davin Wilfrid

    Very sorry to hear of your loss, Sarah.

  • Sarah, I’m truly sorry for your loss 🙁 You are in our thoughts.

  • Jack B.

    I’ll say a pray for you and your family. May your mother rest in peace.

    Here in America, we will soon have our own NHS in what is popularly known as “ObamaCare.” Anywhere from 60-75% of us aren’t looking forward to it, depending on the poll you look at.

    What a healthcare system needs is freedom and competition. Then high-quality, personable doctors, nurses, and hospitals will succeed, and bad ones will change or fail and be replaced in the market. This is how Web design and every other kind of company works.

    Thank you for sharing your experience and take care.

  • Thanks for posting those thoughts and I am sorry to hear about your loss and experience. You made me think hard, which is a good thing!