Bouncing down barriers
“Right. Everyone who needs to test before we start, do it now.”
Panicked at the prospect of my trampolining skills requiring examination before being let loose in the warehouse, I looked around the room to see if anyone was making a move for the door. Instead, the embarrassing realisation washed over me as half the children around me were reaching into bags and pulling out blood glucose monitors to check their pre-exercise sugar levels. I should have anticipated this. After all, I was at a group social outing for children with diabetes...
And what a great outing idea: trampolines and pizza. Bringing together a group of young people with the same chronic medical condition in an environment that was distinctly non-medical. Mixing serious party food with serious exercise to produce a seriously fun night out. What kid (or big kid in my case) wouldn’t love that combo? Who said medicine wasn’t fun?
One of the projects I have been working on through Connecting Care for Children is the development of a web-based app about information governance for under-18s. I know what you’re thinking: how boring. But I am quite excited about it, now having spoken to these young people! Though that was a task in itself: how was I going to get youngsters to engage in such a dry topic, particularly when I didn’t know them?
Before we were let loose to bounce to our hearts’ content, Roshni, their most wonderful diabetic specialist nurse, introduced me to the girls and boys aged 11 to 15. They all had very different styles, backgrounds and interests; a diverse group of young people living with diabetes, accompanied by friends and siblings. We had some time before doors opened so I endeavoured to get started on my mission and sat down with two 12-year-old girls. After a couple of words back and forth, I broached the subject of 'health records' and was greeted with shrugs of shoulders and noses in phones. Understandably my chat wasn’t as interesting as the latest post on Instagram. Fair enough. I probably wouldn’t have been interested by me at that point either.
Time to trampoline. This was the real ice-breaker. And not just for me, but for the group as a whole, some of whom had not met before. We spent an hour jumping up and down, ricocheting off the ground; leaping into pits, attempting the odd back-flip; checking levels of blood sugar, then sucking on tablets of sugar. Watching them taking part in such vigorous exercise but at the same time being responsible (under the fantastic care of Roshni) for monitoring and correcting their blood sugar levels was quite an incredible experience. Friends and siblings were rallying to ensure their loved one with diabetes had been tested if they felt hypoglycaemia creeping in, and standing by them chatting as they waited for Lucozade tablets to take effect. No fuss. No embarrassment. No big deal. Just life. Fabulous.
I had made friends. And by now it was pizza time – the perfect opportunity for a chat. I wanted to find out from them what they knew about health records, what they thought about healthcare professionals storing, accessing and sharing their health information, and would they use a fun, interactive website to find out more? To be perfectly honest, I was expecting returns of "I don’t know" and "not really interested". Instead, I was surprised to find a wealth of wonderful thoughts, opinions and expectations expressed in a forceful and dynamic manner.
The majority of the kids believed taking medical notes was important so “doctors and nurses can know who you are” and “can know what’s happened to you” because "if they don’t know, that’s how mistakes are made”. Examples were illustrated, one being that “if they didn’t write down that I was allergic to penicillin, then the next doctor might give me penicillin and I would die”. There were nods of agreement, but one girl looked horrified. “WHAT! My mum takes notes when I’m at the GP. Doctors don’t take notes about me – that would make them stalkers!”
We had unlocked the minds of these young healthcare users and their friends, and had opened up a lively discussion. Access to personal health information was an important issue to all concerned:
“If people can only see my health record if they’re going to help me, then that’s ok.”
“Yes, only professionals can read them, like nurses and stuff.”
“People who need to know, like doctors and nurses, can access it but not strangers.”
“I only trust my own GP, or people I’ve met.”
“Yeah, but you don’t know who to trust anymore in the NHS. Like in the news, how it said the NHS had lost like 100 people’s records and all their information was just… OUT there.”
“Well this government is going to privatise the NHS anyway so it doesn’t matter.”
At that point I left them to their political debate, quite astounded that these young minds had developed such strong views already. At the age of 12, I’m not even sure I knew that the term NHS existed; never mind holding any form of opinion on it!
I moved on to a young brother and sister and asked them about the sharing of health information: “Little by little the GP takes the information from you and shortens it, then they put it in a document and send it to a psychologist if it’s about your mood, or to a doctor higher up if it’s a healthcare problem. They can help you if they know what’s happened to you.” How astute. Throughout our conversations it became clear that most young people believed the system worked and fully entrusted healthcare professionals to share and access their information in a confidential way – we hold such a sacred responsibility and must be careful not to jeopardise it.
Despite good attempts at describing the system and there being a generally agreed belief that doctors and nurses only use health information as a means of making them better, there existed an air of a lack of understanding. One 13-year-old girl stated: “When doctors say they will ‘run information by’ a specialist, I don’t know what that means, but my parents nod so I think it’s alright.” Hmm… together with the young girl who thought it was stalker-like of doctors to take notes, this might indicate a minor failing on the part of doctors. These are children on the brink of becoming young adults who we should be empowering to take responsibility for their own healthcare – how can we expect them to take on such a responsibility if we do not explain ourselves in a comprehensible way and ensure they leave our appointments armed with an understanding of their management plan?
Behind the selfies and the singing were a whole lot of fresh young minds, already engaged with the world of healthcare and developing opinions on these issues. And what we could learn from listening to them: they had clearly made their own simple – but insightful – observations, formed opinions and were more engaged in their healthcare than I ever imagined young people to be. And they wanted to know more. Everyone I spoke to said they would be interested in a web-based app about these issues, and would actively seek out a resource like this online if they planned to see a doctor for 'private' matters.
What an evening of wonderful insights. On reflection, despite being 'the doctor' there, I was the individual least informed and the individual with the most to learn. I had been the one in the group most surprised by the regularity of blood glucose monitoring. I was the one most surprised to learn that many of the children were becoming remarkably hypoglycaemic after just 15 minutes of bouncing. I was the one shocked that we were having pizza for dinner – surely not a diabetic dinner? How completely ignorant I was. Of course, why shouldn’t they be free to eat and play just as other children do? It is our task to ensure diabetes treatment fits around children’s lives and not the other way around. That is the whole ethos of our diabetes team and the management plans they practise. What a great testament to these social groups and the incredibly important work our paediatric diabetes team do with our young people and their families.
Two learning points from the day:
1. Modern diabetes management is about engaging the family and community as a whole in the condition, and modifying diabetes management to fit each child’s individual lifestyle, allowing them to live the life they want.
2. What a powerful experience it can be to actually ask children what they think. How important it is to listen to these young voices, nurture these young opinions and get them engaged early on as we attempt to shape their future healthcare.