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.