I expect that I will disrupt a bit and fail a lot. I'll be scared, think about giving up and then, just as I think it's time to forget the whole thing, someone will write to me and tell me that I made a difference.
This month, in my home town of Sale, Greater Manchester, I invented a talking inhaler. I strode into town to have a serious chat with the general public about all things breathing. It's a way to find out what's really going on - people will engage at a more honest level when there is no clinic or uniform or titles.
On the third Sunday of every month in our town centre, we have our Maker’s Market, where all sorts of craft and artisan fare is traded. And this time it featured me, in a giant piece of foam, held together with gaffer tape and stitches, ingeniously devised and made by my local volunteer crafting group. They rose to the challenge, barely raising an eyebrow at my request, accompanied by a nice sketch to show the exact design and colour.
Was I a bit nervous of the reaction? Yes. Had I done it before? No. Well not as an inhaler anyway. And I didn’t want to go, really I didn’t. It was cold-never the best for my chest and after all, I’m still an introverted youngest child, specky and wheezy. This is all an act that I force upon myself because of all the other wheezy children and adults in Sale. In my head they are all me and things ain’t any better for them than they were for me back in the sixties; heaving my shoulders up to my ears and scaring Geoff and Hilda, my parents, half to death.
I’d spent the night before stuffing a chocolates and wallet sized cards bearing ‘5 things to know’ about helping children with asthma into tiny ziplock bags. I’ve handed out hundreds of these cards locally, because I’m aiming for Sale to become the country’s first ‘breath-friendly town: where the good citizens of M33 look out for breathless, wheezy people like I used to be and know the basics of what to do. (I’m in remission from my asthma, woohoo!)
My unbidden creative mind drives me to primary schools where I perform a puppet show in assembly, where the Big Bad Wolf has asthma and needs children to tell him which inhaler to take to blow the piggies' houses down. And I dress up as Darth Vader and pretend he has asthma. Obvs. I reinvent him as newly-diagnosed and not wanting the Storm Troopers to know that he has asthma. He has a tin of questions and he asks the good people of Sale to dip into the tin and answer them. If they get the question right he adds their name to his roll of honour. I keep a tally chart of how many adults and children get my questions right or wrong. Everyone gets a sticker saying well done of course. Even adults like stickers.
So I can tell you that adults are better at getting their name on Darth’s roll of honour than children, but marginally - and even those with asthma get a lot wrong-mostly about asthma action plans, spacers, preventers, first aid…well, everything really. But we all have fun and learn something. They lean in and tell me about hospital admissions, sleepless nights and confess their forgetting or omitting their medications.
But last Sunday I didn’t want to go into town, really I didn’t. It was cold-never the best for my chest-and I had no idea what reception I’d get.
Striding with some purpose-or as much purpose as the foam round my legs will allow-I approached a group of friends and start proffering my cards and chocs. Wrong. Adults will back away if you do this. I realise that they think that I will make them do something ridiculous and so they don’t even want to look my way never mind speak back to me. Children stared hard at the talking inhaler. If I’m dressed as Lord Vader they usually run over because they know who he is, but this time they didn't know what I was or what I was trying to do, hence the staring.
So I stopped accosting people and I adopted a ‘come and speak to me’ stock-still-smiling-posture-but that didn’t work either. By now the introverted part of me was urging me to go home, and stop making a fool of myself. But I know from years of community engagement work that I just have to find the right approach. So I started walking slowly up and down, like a catwalk model showing off couture until I catch someone looking at me. And lo! These are the people who wanted to talk to me about inhalers all right.
What did I find during these chats?
A young mum of a 6-year old didn’t know that 3 or more puffs of blue reliever inhaler routinely = poor asthma control, needing a review with the practice nurse.
2 children given blue reliever inhalers and no brown preventer inhaler ‘because it’s probably a post viral wheeze’ said their doc -it might be-but no excuse for not trying it lovely GP!
A child of 3 with 4 hospital admissions not given a trial of preventer inhaler alongside their blue reliever.
4 children with no personal asthma action plan from their surgery
A 6 year old child’s parents told ‘he will grow out of it’ ( he won’t but could go into remission)
A 10 year old whose father had no idea if his son took his brown preventer inhaler twice a day or not. It’s wise to always supervise children and slowly hand over self -management in mid teens.
An adult with asthma who knew as much as me and whose self management was frankly excellent!
By the time that my lovely husband joined me to check that I was OK and act as event photographer, I was happily chatting away, the foam inhaler keeping me toasty-warm.
What I was doing here is based on an approach called ‘positive deviance: which is an asset-based approach that identifies those who ‘positively deviate’ from the norm and as a result have more success in solving messy problems than others. I'm testing out what ‘deviant’ behaviours might be successful, because just 'telling the patient what to do' isn’t working. People have their own health beliefs and this affects their concordance with treatment. It's also about taking the community on a journey of discovery - so I report everything back to my community as publicly as I can. To do this you have to know where people get their news from. On this occasion I chose various local Facebook pages with up to 25,000 members, so that people could follow what was happening and could interact with me about it. And that’s what they're still doing-a week later- tagging each other saying things like ’look at this, Sharon’ and commenting that ‘it isn’t good news is it?’
The self-care of those with asthma has been a messy problem for years. It hasn’t really moved on that much since the 2014 National Review of Asthma Deaths, which reported the events leading up to deaths such as taking way too much blue reliever inhaler - 12 inhalers worth a year - when each inhaler should last someone 6 months.. and other shocking data like leaving it too late to call an ambulance.
I reason that we as citizens should just share what we all know because we are the experts by experience that can increase herd knowledge and encourage people to look out for each other .. and let them enjoy themselves in the process! I also have to be easy to follow, so with child asthma for example there are only 5 things to know.
I ask people to keep a card in their wallet or purse to remind them what they are.
I also believe in the power of young children as super-vectors of asthma knowledge, so I infiltrate Brownie and Cub units to help them make model lungs out of plastic bottles and other things that will help them gain an 'Asthma Challenge Badge' so that they can spread the word. One day, after an asthma themed treasure hunt’ across 3 parks in Sale, a grandmother told me that the following week her 10-year-old granddaughter spotted a child having an asthma attack in the playground and raised the alert with a member of teaching staff.
Being a clinician, there has to be hard evidence behind what I’m doing here: Essentially the evidence-based practices are play therapy and story-telling. We start life learning through play but somehow we become too grown up for it. Stories are the way that we learn and remember information. And stories can induce empathic and cooperative behaviours. I’ve told my story of The Big Bad Wolf Has Asthma to literally thousands of children and teaching staff. I've faced a tough crowd of Salford army cadets and told them how aged 20 I almost died from an asthma attack because I was stupid student nurse and refused to take a preventer inhaler because of imagined side effects. The more detail and emotion that I put in the more children and young people listen and remember. And then when I asked them to volunteer to ‘join my nursing team’ about a dozen put up their hands. I was amazed.
If you'd like to find out more about how I am progressing on my breath-friendly town journey, visit my BreathChamps website here and it would be great if you chose to support me thought your Coop membership.
I expect that I will disrupt a bit and fail a lot. I'll be scared, think about giving up and then, just as I think it's time to forget the whole thing, someone will write to me and tell me that I made a difference. And then I'll scrawl on the whiteboard that I keep on the wall in my shower (where I do my best thinking), inventing even more crazy ideas. Because somebody has to - and if you, dear reader, have that disruptive streak just know that you are not alone.
For those of you who are student nurses, can you spot where I reflect in action and reflect on action?