The reason I started this blog last September was to keep my family and friends informed of my progress and to document everything to do with my illness and recovery. I never anticipated that people I’ve never met before would be following me and would care about what happens to me – be it friends of friends, people from the triathlon/running world, doctors/nurses and anyone else. Either way, the interest is welcome, especially if I can help by using my experience or raise awareness of any kind. So today, I’m writing about my experience of being in hospital and from a perspective of one of my best friends, my sister-in-law. This blog post is for all the doctors and nurses out there, experienced, junior or in training – it’s all relevant.
I’ve touched on this subject in previous posts before, but I feel more than ever it is important to lay this out as it is, especially since my sister-in-law has just given birth and a few weeks on, she’s still in hospital fighting off complications.
As you all know, up until about a month ago, I’ve spent the past 10 months living half my life in hospital and half my life at home. My longest spell as an inpatient was just over three weeks. A lot of the times, I was restricted to my room or the ward, I wasn’t able to go outside or other parts of the hospital. I had everything done for me and I missed my freedom and independence. I felt helpless, frustrated, alone and the longer I was in hospital the more I got depressed, the more I started to lose motivation. Had it not been for Ade, I would have felt a lot worse, he kept me going. But the one thing that kept me going even more was the prospect of going home, and this hope was given to me by the doctors and nurses that were looking after me. Each time I was in hospital, I was given this hope and on several occasions, this hope was ripped out from under my feet and each time this happened, I would get even more depressed, frustrated and upset. The reason why the hope was taken away from me so often is because doctors and nurses don’t communicate properly with each other or simply say what the patient wants to hear. Here are a few examples:
-On one occasion, I was told by a nurse that if my blood levels were normal and my temperature didn’t spike, I would be able to go home the next day. The next day, they were normal, but the doctor said that I couldn’t go home unless they have been stable for 48 hours.
-Another occasion I was told by a nurse and a ward doctor that I would be allowed to go home for a few days before my blood levels dropped. However, my consultant said no and that I was to stay in. I wasn’t able to go home for another 8 days.
-More recently, I was admitted because of a fever. When the fever settled down and my temperature returned to normal I was told by a nurse I would be able to go home the next morning. Morning came and the nurse said I wasn’t allowed to leave until I have been checked by a doctor and that he would be with me in 20 minutes. More than 3 hour passed before the doctor turned up and although I eventually got to leave, it was another example of false hope.
These are just three examples of many instances that I had been given false hope. This may sound like a small deal to most people, but when you’re an inpatient with not much to look forward to, you hold onto the next bit of hope that you’re given. That hope and optimism actually means a great deal to a patient, so when that hope is taken away, it’s absolutely devastating. Ade got so pissed off with doctors and nurses giving me false hope, he complained to the ward manager and doctor about it as he couldn’t bear seeing me break down every time I was let down. He pretty much told them that if they are unclear or they can’t be sure of when I could be discharged, not to give me (or anyone else) something which they can’t be sured will be followed-through.
In the case of my sister-in-law, she had complications after she gave birth. She was sent home not long after but was readmitted due to an infection and various screw-ups by the hospital at the time of the birth. She was put on IV antibiotics and monitored. She has now been there for over two weeks and over the course of her incarceration, she had been told she can go home, she can’t go home, she can go home, she can’t go home. On one occasion she was told by one doctor she could go home the next day, and half an hour late, another doctor tells her she was to stay in. This happened time and time again and each time she was left disappointed and upset. Each time this happened I got angry as I know exactly how it made her feel and it got me thinking that this is widespread. My sister-in-law is being treated in Northern Ireland and I was being treated at UCH in London. Not so long ago, something similar happened to another friend who was being treated in Southend. This has got to stop, nurses and doctors need to communicate with each other and not give false hope to patients. If in any doubt, don’t say anything or say ‘I don’t know it depends on such and such..’.
I’m not attacking what the nurses and doctors do, in fact I think the vast majority do an amazing job. This blog is just to highlight what it’s like from the other side – the patients. So if you’re a nurse or doctor, or indeed training to become one, remember this blog and remember how something so little can mean so much to a patient in hospital.
Liz Land
July 31, 2013 at 7:30 pm
How true!! Unfortunately the left hand and right hand appear to be far more than an arm’s length apart in the NHS. In the world of project management I was always taught to over-budget and over estimate the time to complete, then when you come in under budget and before time everyone is happy. But I guess as a patient you just want realistic expectations. Hopefully this post will reach a few of those people concerned and maybe one day this will be rectified. Hope your sister in law is feeling better soon – and yourself of course. XX
Kim
July 31, 2013 at 10:18 pm
Nice post Kat.
Sometimes, people think they are being kind by giving someone hope when they really don’t have anything to base it on. They don’t think ahead about how that person will feel if what they have been told to look forward to gets ripped away.
Hopefully, someone will read this and realize that what they are doing is not kind, but actually very cruel.
In general, a lot people have a tendency to say things that they think others WANT to hear instead of speaking the truth. It is the easiest path to take as they leave the person smiling. They do not think about how that person will feel when they find out the truth!
On that note….. You WILL enjoy your up coming trips! 🙂
I have nothing to base this on but the knowledge of how much you are looking forward to seeing people you love! So don’t make a liar out of me! LOL!
Paula Garsden
August 1, 2013 at 1:23 pm
Fortunately, I’ve never experienced false hope; what I have had to endure is a nurse insisting on holding my hand during a procedure and treating me like a two-year-old, and I’ve been patronised with a simpering attitude, a “there, there” approach. Medical staff too often treat patients like imbeciles, as though they’re incapable of dealing with their medical condition. Pxx
Steph
August 1, 2013 at 6:50 pm
God what I would have given for hope of any kind when my daughter was in the hospital after her accident. None of the Dr’s or nurses would give me any kind of concrete information other than: “It’s a brain injury. We just don’t know. We’re doing the best we can for her.” I guess I should be grateful they didn’t pretend things were going to be ok if they weren’t sure. They were wonderful caring for my daughter and I could not have asked for better, more caring nurses (I have decided that the best Drs have no personalities. They commandeered their “personality” brain cells and applied them to knowledge of their craft instead. Which is fine. I didn’t need them to have a personality. I needed them to save my daughter’s life and they did that.) I’m sorry you’ve been put through the ringer emotionally. **HUGS**
mikikokitamura
August 2, 2013 at 6:08 am
Good thought! I hope your sister in law will be fine and leave the hospital soon! 🙂 And your husband seems to be really gentleman because he tells the doctors and nurses about the simple hope you have. Happy August! 🙂