An Inspirational Evening

Cloak and daggery, mystery Twitter Direct Messages and finally a Top Secret Email that forbade me to tell anyone anything until the night itself. How wonderfully exciting! Except for two things. I’m the world’s biggest chatterbox and the worst secret-keeper on the planet. So I bent the rules just a teeny weeny itsy bitsy little bit and decided to tell immediate family but not friends. Then, a few days later, I decided that some of my friends were almost like family, so I whispered the news ever so quietly and made them promise not to tell a soul. If they did, we didn’t get found out and we got away with it, so please don’t you go now and tell anyone either. Promise?

Secondly, I was sure that they must have made a enormous mistake. This was so huge, such a big event, and a massive honour. Surely they couldn’t really mean me? Things like this don’t happen to people like us. So I checked with the really helpful Paul Hewitt, and yes, they did actually mean me. When I was able to pick myself up off the floor, if my joints hadn’t been so addled by cancer treatment, I’d have tap-danced all the way down the High Street and back in shiny red shoes, a purple and orange bikini and a gold lame Top Hat with a pink feather on the brim.

So, on Wednesday 9th July Malcolm, Adam and I had a wonderful evening at a simply stunning reception in The Orangery at The King’s Fund in Cavendish Square,  where The HSJ announced their list of The Top 50 Inspirational Women in Healthcare 2014. I was there to collect my award for being one of them. Wow simply isn’t a big enough word to describe how it felt.

To be honest, I was more than a little daunted when I first arrived. I felt a bit like the gatecrasher at the party – here I was with the 49 other chosen women and their families – and they were all really impressive high-flyers at the top end of really interesting careers. Almost exclusively, they were Professors, Medical Directors, Heads of NHS England, Directors of Nursing or pioneers of hugely innovative and beneficial healthcare initiatives; all of them doing stunningly amazing and very important work.

I tell you what the very nicest aspect of the whole evening was. It was the atmosphere in the room. These were not the female equivalents of stuffed shirts by any means. On the contrary, without exception, I think deep down every single one of these amazing women was every bit as surprised, delighted, embarrassed, honoured and humbled as I was to be there. It’s rare to be in a room full of so much warmth, encouragement, goodwill and friendly openness – and before long I was meeting, chatting and feeling completely at ease with this lovely group of women. An hour or so into the evening, when the list was actually published and we were each given a copy, there was genuine pleasure, not just in our own inclusion, but in everybody else’s success as well. Here’s the full list for you to see. The room that had been noisy with cheerful chattering and laughter went very quiet after Alastair McLellan, The Editor of the HSJ, gave his uplifting speech as the list was distributed. Heads down, reading avidly about each other and the reasons why each of us had been chosen by the judges,  the silence was punctuated with whoops and hugs as everyone congratulated each other and the sense of collaborative celebration was tangible.

If I was daunted beforehand, Adam at only 16 must have felt a thousand times more so. Just before we arrived he said, “Mum, I don’t think anyone will want to talk to me, I probably won’t even be noticed”. “Nor will I, sweetheart,” I replied, “so don’t worry, we can stand in the corner and talk to each other”.

Well, we were both completely wrong. Every time I looked across at Adam he was chatting to somebody, or laughing with someone else, or – and this became his speciality that night – he had been put in charge of someone’s camera and was taking group shots of women together. He had a great time, and he also proved himself to be completely his mother’s son by developing a brand new life-skill; surreptiously-subtle canape-chasing. He’d never had canapes before and he became very partial to them very quickly, especially the ones with two perfectly fried chips on a cocktail stick with a beautifully prepared nugget of battered fish.

Out of his teenage uniform of hoodie, jeans and trainers and in his smart suit he looked every bit the young man, and I was so proud of how he confidently mingled and networked completely independently of Malcolm and I.

He had one particularly memorable moment too. Adam really enjoys watching re-runs of “Whose Line is it Anyway”, and guess whose wife is also an Inspirational Woman? Professor Jane Anderson is married to Clive who very kindly, at the behest of Kath Evans, posed for some great photos with Adam.

I hadn’t met anyone in the room before, but thanks to Twitter, I really felt I knew a lot of them already. Kath Evans is just so lovely, she was every bit as warm and supportive as I expected her to be from our Tweetchats and emails. Gill Phillips of Whose Shoes, and Alison Cameron were the only other women on the list of 50 who are not employed by the NHS, and it was simply lovely to meet them in person. When you meet someone you know on Twitter for the first time they seem larger than life and almost like a celebrity. I know their faces so well, but only from a tiny thumbnail icon on my phone, and suddenly here they were, standing right beside me and chatting freely, no longer restricted to 140 characters of chat at a time.

It was lovely to meet so many other fabulous women from the list; Dianne Brown, Teresa Chinn, Alys Cole-King, Michelle Drage and Laura Serrant to name but a few, but we’d have needed a week or so to get to talk to everyone because when a conversation started flowing there was always such a great and genuine connection that it was hard to stop chatting to meet someone else.

There were warm welcomes and fabulous chats too with some of the people there to support the rest of us, people like Meena who works for the HSJ, Ruth who is Head of Nursing at Liverpool Women’s, Lorna who works for NHS England, Megan who works for Guy’s Evelina, Paul Hewitt also from the HSJ, and of course, the host for our evening who really pulled out all the stops – Alastair McLellan, the Editor. It was just such a great evening and one I’ll never forget.

I didn’t realise it until a few days later, but there was something very special happening in that room that evening.

As you know, I’ve recently written a book, “The Special Parent’s Handbook”, intended to make things significantly easier for parents of disabled and seriously ill children and all those who work with them. It’s all from very personal, tried and tested experience of what works and what doesn’t, all the stuff my family invented as we stumbled from one crisis to the next emergency, and I’ve written it simply because I never want any other parent to feel as hopelessly lost, frightened and clueless as I once did when the children were very small. It’s about the practical, emotional and physical – how to dig deep and find even more resources when you’re already running on empty, how to battle the systems to get the right care and equipment for your child, how to cope with stares in the street – all that sort of thing.

When I was writing it, I realised there were three recurrent themes; the real reasons and barriers as to why everything had been so hard all the way through my children’s childhoods. It was suddenly apparent that the book would never have had to be written if only these three things could be addressed and fixed. It wouldn’t even cost much, if anything at all, and, if done properly, there would actually be enormous financial benefits. These three aspects also completely support and enhance the  6 “C’s” values of the NHS. Although my experience is very much from Paediatrics and more recently, Oncology, these three themes are universal, and apply equally importantly in any branch of medicine, indeed in any sector of our public services.

Here they are:

So what was this sense of magic then? Well, after all these years of battling and fighting and cajoling and being back-footed and advocating first for my family and later for all families, the tide is turning. There is a veritable tsunami of goodwill on its way. It’s not just those of us from marginalised and little-heard communities banging this drum on our own anymore, there is a tangible movement, a will, a determination and an openness that is new but very exciting. People from on the frontline, in management and even some of the policy-makers are looking for new ways of doing things. They are listening, we are being heard, and there is a definite spirit of co-operation and a real desire to sing from the same song-sheet.

At the moment it’s still embryonic, and it’s very clear that people’s thinking and organisational cultures don’t shift suddenly and dramatically overnight, but I can hear the orchestra of us all together warming up and auditioning for new members, and we’ll all learn how to play new music as one.

It will need an army of change-makers, and it will have to be done with sensitivity and warmth, but the work has already begun. There are lots of us, coming together, supporting each other, with the same values and ideals, and a fired-up determination to make it happen. I’m not going to stop til I’ve done as much as I can to help shift the thinking and cultures so that we have new ways that work better for everyone. I’ll keep going until we’re all back pulling together for the greater good, rather than standing on different sides of the totally unnecessary and divisive “them and us” fences.

Until my cancer stops me, I’ll be speaking at conferences, running workshops, facilitating discussions or focus groups, for anyone who’ll have me – healthcare professionals as well as parents. Bookings are coming thick and fast already, exciting times, and I’ve got dates in the diary right through til October.

Are you up for this too? Brilliant! The more of us doing similar work who can  support each other and pool ideas, resources and energy, the better. If you’d like to connect please follow me on Twitter – @SpParentsHbook, find me on Linkedin, or “Like” The Special Parent’s Handbook Facebook Page. You can also email me from this website. Best of all, please share this blog-post too so we can link up with other like-minded people from every side of the healthcare equation, so that we can stand together and turn our ideas for a better future into a reality.

Thank you.