IF I COULD CHANGE JUST ONE THING….
…..An invitation from Rachael, our Founder – to UK based Societi Supporters.
If I could change just one thing…..I wonder what it would be!
I’m talking of course about my own families experience with Kawasaki Disease. What would have been different if I’d known more… if doctors had known more…. if questions had been asked sooner – the right questions. Or tests done sooner – the right tests.
There are so many things I’d like to change! But if I could only change ONE THING – what would it be?
I’m pondering on this because I’m writing an article for the Special Edition on Kawasaki Disease being published in Children, the paediatric journal. If you follow our Facebook page @SocietiFoundation you’ll remember our earlier post on this – our Societi Professor, Prof Tulloh is the Guest Editor.
Prof Tulloh asked if I’d write a paper from a parents perspective so I’ve decided to write about this: Thinking back to our experience, if I knew then what I know today about Kawasaki Disease, what ONE THING would have made a difference. Can I crystallise that?
What I’d REALLY like to change of course is to have never been affected by Kawasaki Disease! But ahhh…. we all would, I know…! But I’ve been trying to think of the ONE THING that would have really made things different for us – and importantly, would make things different TODAY. Because this article is only useful if it looks forward — at what we can and need to change TODAY – what I and perhaps we, as parents and patients want to change in the care of those affected by Kawasaki Disease. TODAY.
When I think about this, I’m reminded of parts of our experience like – when desperate for an echo, which I knew we must have – I was told respectfully but sternly by a doctor “Madam, this equipment is very expensive and reserved for children who are actually very seriously ill”. We didn’t get our echo….
To be clear – this article isn’t about airing problems I faced as a parent, that would achieve nothing!! It’s about what lessons might still be learned to make things better.
So – for me – having Kawasaki Disease always considered as the MEDICAL EMERGENCY it TRULY is — may be my “ONE THING”. And I’d ask our doctors as a parent and as Societi Founder “Please…if you suspect Kawasaki Disease, it’s serious – don’t wait, be bold – take action and treat URGENTLY.”
What would your ONE THING be – and why?
I’d like to know what your ONE THING to change would be! Would you like to contribute your ONE THING to this article? Depending on replies, perhaps we can create a much wider article with the changes we as 20, 30 or many more parents and patients wish to see. Some of the changes sought will overlap so it could in fact be a blend of points to represent the views of a very big community of Societi Supporters. Together, through this article, we could highlight a series of key changes needed in the U.K., based on our own views and experiences. With one, collective voice. I think it could be a really powerful article! Please – do get involved! I’m excited to see where this may take us! 💕
To give you a couple of examples, I’ve asked a two Societi Supporters (thank you both 😊) what their ONE THING would be already and from two very difference perspectives, here’s what they said:
MY ONE THING – Advice for Parents on Smoke Free Environments
“I was a baby when affected by Kawasaki Disease – my parents were smokers and I went on to have major surgery quite early because of complications. As an adult I wonder whether the environment I was brought up in contributed to this and think doctors should consider – even today – strongly advising parents on totally smoke free environments for their children.”
MY ONE THING – More support please, not having to be the expert
“Kawasaki Disease is serious and lifelong for us as a family but unlike other serious diseases, there’s so little knowledge in the medical community and little proactive follow up, unless we make this happen ourselves. We find out what we can – and ask our doctors to help. We’d like more expert support because we worry that we’re not the experts ourselves but it does feel like we have to “lead” our care.”
Do you want to contribute?
So if you want to contribute to the article (you must be U.K. based / treated in the U.K.) in 100 words or less (a challenge!) can you describe what your ONE THING would be and why? – thinking about what CHANGE you’d like to see?
If you want to put something forward – you can do so right away through our contact form here https://www.societi.org.uk/contact-us/ (not any other route please) I’ll look forward to hearing from you!
Deadline for contributions – and the process
I’ll be writing the writing during May and June – so the deadline for your input is the middle of June please. After that the article will be reviewed by others. Whether it’s included wont be my decision alone! It will be scrutinised for its merits and will have to come up to scratch! But I’m confident we’ll have a really valuable article here. The actual journal will go to print early in 2019.