Some of the clearest memories of my childhood are about things that happened to me in hospital, and to be frank most of them are not of good experiences with healthcare and clinicians. Those experiences have shaped my current relationship with medicine, for both good and ill. Yet when we are having interactions with our paediatric patients we rarely think about (outside the paeds world) what the legacy of those interactions will be. For some reason I’ve been reflecting on that legacy for me recently and have begun to start unpicking why its a driver for much that I am passionate about as an clinician.
What experience led me here
I didn’t deliberately choose to work in a paediatric setting but over the years I’ve had plenty of opportunities to leave and work in a more general setting. I’ve never really been able to articulate why maintaining my work in paediatrics has been so important and aligned to my personal values. Over the last 6 months however I’ve been involved in designing our new children’s cancer centre and the conversations have triggered some realisations about why it matters so much to me.
When I was nine I was in primary school (about 5 years before the picture of myself, my brother and sister above). At lunch time I started to cough, by PE class at the end of the day I was coughing so much I sat out the class, and remember watching the others running in the sun from the classroom window. I walked home after school, at which point the coughing was continuous. My father took me to the GP who offered to call an ambulance but said it might be quicker for him to just drive me to A and E with a letter from him. The GP didn’t speak to me, I just listened to him talk to my father.
I arrived at A and E. It was late, I was tired and my chest was really hurting with coughing so much. I didn’t really know why I was there, after all it was only a cough. I was placed in (what I now know) is a side room and 15 doctors/medical staff came into the room. They looked at me, they prodded me, they talked about giving me an emergency tracheostomy, no one spoke to me. I couldn’t even see my father due to the number of people. The only person in the room who talked to me was a nurse I remember to this day called Maxine. I remember her as this was the start of many journeys to A and E over the coming years and Maxine was almost always there and without fail was the only one who spoke to me.
The next thing I know my father is no longer there. I’ve been rolled into (again what I now know) is a theatre suite. Someone has put a massive black mask on my face and the world is swirling, people are going in and out of focus. It felt like a horror movie. I woke up in a dark room on my own. I was unable to move, unable to speak (I now know I was intubated). The only thing I could see was that right in front of me was a window to another room. The curtains were open and there was an adult in the other bed. He must have crashed as they were attempting resuscitation. There was beeping all around him and me. He died and I watched unable to move or speak.
Over the next week I stayed in a cubicle on an adult intensive care until. Frequently on my own I had my toy popple and I would shake the tail to try and get attention. My mum was often there and I was mostly sedated but I don’t remember any member of the medical team apart from the odd nurse ever speaking to me. I was given a book to write in and on one night they brought in a TV so that I could watch Agatha Christie’s Poirot. I fell asleep as I was sedated. When I woke up the TV was still there and on. Hours has passed and a horror movie was on, I couldn’t turn it off and no one came. Again I just lay there scared.
So why am I telling you this? Afterall medicine must have changed a lot in the last 30 years and this wouldn’t happen now.
This was the start for me of years of being ignored in rooms and having procedures undertaken without being included in the decision. It was part of time spent in hospital without being able to get out of a bed or interact with anyone else, no access to school or even a space to play when feeling better. Although things have improved I’m not sure things have truly changed in many spaces. That’s the reason I’m writing this post. To raise awareness of the importance of not just seeing children as little adults in healthcare but as people with specific needs that need to be catered to.
How do we do things differently?
I recently posted about how I felt we needed to challenge ourselves more on delivering patient centred care. When children and families are involved however I think many people feel even less skilled to adapt what they are doing in order to engage the patient as well as their families in discussions and decision making.
There is a great course run out of GOSH called MeFirst which I try to encourage my Healthcare Science staff to engage with and which I strongly believe would beneficially to anyone working I healthcare. Even if you don’t work in paediatrics you are likely to need to communicate with children and young people at some point. It provides a communication model which will support us in putting children and young people first in any interaction. If you come through the standard medical and nursing training route you are likely to have much more embedded training in this than those of use who belong to other healthcare professions. It is especially important therefore for those of use who haven’t had this training as part of our standard curriculum to search out opportunities to upskill ourselves and improve our practice.
What tips do I try to use in my practice?
- Speak to the patient as well as their families when you’re introducing who you are and starting your conversation:
- Try using images and cue cards to support patients articulating how they feel about options, decisions and interventions – if appropriate for the patient
- Spend time with the patient and family to try to understand their level of understanding in order to make them feel heard, not patronised or baffled by information
- Avoid using technical terminology whilst not dumbing down what you are saying
- Remember to use active listening to try to really hear what it is that patients and their families want. They will all have different prioritise and things that are really important to them. Plans should not be one size fits all
My interactions with healthcare as a child led to me being completely terrified of engaging with healthcare as an adult. I experience a really primal fear reaction which no amount of rationalisation can overcome. I think its why I got the job I have, now in hospital I am the person who feels able to make decisions and who is in control and listened to, rather than ignored and scared. Most importantly however I am also the person who can sit in a room and advocate for us to do it better. In my world I have the lowest skill level as I’m surrounded by brilliant paediatricians who are better at this than I will ever be. However if I can make a difference for one child to feel less scared then that is success for me!
All opinions on this blog are my own