I’ve just returned from a fantastic trip to London to speak at the ‘The 6C’s are for Everyone’ event. It was a humbling experience for someone who is just a dad to have the ear of so many people in various positions in the NHS – all of whom can influence how children like Isaac are cared for in the future.
What’s here is the notes I wrote before talking, as close to a transcript as there might be! The story about the amazing Elaine Richmond is relayed in full here, taken from my earlier blog ‘Everything Happens for a reason’.
If you were there today, thanks for listening, I hope I meet you all again as theres so much to do.
The 6C’s are for everyone…
It’s great to be here. Humbling to be able to speak to an audience so key to influencing how care is provided across the country. Humbling though it may be, the next 25 minutes isn’t about my nerves at speaking to such a big audience, or the inevitability of failure of a dad from Chorley trying to perfect received pronunciation, it’s about something bigger.
What I intend to do is talk to you about why the 6C’s matters. Why it matters to my son Isaac, why i§ matters to my family, what makes the 6C’s a set of verbs rather than another bunch of words on another set of documents.
Why it matters to me is because it matters to Isaac. Isaac is my 3 year old son. Polyhdramnios of mum at 26 weeks, suspicion of a TOF, Born at 31 weeks, monozygotic diamniotic twin one, no respiratory effort in first 2 minutes of life, vented for 7 days, CPAP / BIPAP for 9 weeks until had tracheostomy due to vocal chord palsy, abnormal brain scan query neuromigration disorder, features of lissencephaly, aphasic, gastrostomy at 6 months, clinical diagnosis of bilateral quadriplegic cerebral palsy. That’s Isaac from a purely medical perspective.
The Isaac I know is a little man who has fought for survival since before he was born, who has battled through experiences that us as adults would find hard to be resilient to and who can still smile as innocently and purely as any other 3 year old should. He loves Mickey Mouse, If you thought you had a bad journey getting here, have a sense of perspective and recognise that Isaac is only one of thousands of children like him who you meet most weeks.
Where the medically defined Isaac crosses over with the Isaac I have at home is where I need the 6C’s to be. Me, along with Isaac’s mum and his deranged but loving twin brother Ethan, and his rugby crazy but protective big brother Jake, can provide care that has the 6C’s, an L for love, a P for play, an A for advocating and a P for protection. I can also provide a T for tired…!
I need the 6Cs. I dont want grand promises, I don’t particularly value well intentioned but organisationally undeliverable ‘we are a 6C’s friendly provider’ badges over the door, I want a C – commitment. I’ve seen campaigns come, campaigns go in 15 years in social work but what matters is commitment and legacy.
Isaac will need 24 hour care all his life. So far, he has had over 190 days in hospital, cared for by hundreds of doctors and nurses, he currently has a neurologist, a dietician, a general paediatrician, an ENT consultant, a brilliant secretary for the ENT surgeon who chases the surgeon up about appointments and squeezes us into clinics, a physio, an Occupational Therapist, an opthamologist, a gastro consultant, an orthopaedic consultant, a portage worker, a specialist dentist, an outreach nurse, a health visitor, a guy who drops off his trachy and PEG supplies, a lovely lady called Liz at Coppull Clinic who orders the supplies when we email her, a GP, a GP receptionist who despite the ‘must request online’ process for prescription will order when we ring her, and a great assistant at the Tesco pharmacy in Chorley who orders his omeprazole in solution before we drop the prescription off because it’s a special order item. Delivering Isaac’s care is a team effort, and like any team it’s as good as the person who’s weakest.
Tiny acts matter. Isaac needs commitment.
There’s 18 different health professionals involved in Isaac’s care on a quarterly basis, and double that number involved if you look at his nursery care and therapies in the community, maybe even triple that if you include Liz at Coppull clinic and the lovely Alison at Tesco Pharmacy in Chorley. Each person is capable of just doing their job. That’ll keep the wheel on. But if each person committed to make just 1% improvement to how they do the job for Isaac then the cumulative impact would be greater than the sum of it’s parts. Incremental gains is how Dave Brailsford the GB Cycling Coach put it ; we’re not fixing something that is broken, we’re further improving the output.
Tiny acts of compassion : for every person involved in Isaac’s future care to be as compassionate as the nurse that stopped me on the corridor of NICU when we’d been told Isaac had a significantly abnormal brain scan and said ‘come on, lets get you a coffee’, for every person to be as compassionate as the one that said to the next nurse coming on duty ‘Isaac likes his nest setting up in his bed to be this way so he can see his teddy’, for every worker to be as compassionate as Elaine Richmond, a midwife.
We first met Elaine in early June 2010 when we were referred to the Foetal Medicine Unit as St Mary’s as ‘twin one’ (Isaac) wasn’t swallowing amniotic fluid and there was too much fluid around him. It’s pretty hard to cast our minds back to that first appointment and the upset of it, and being told that there was a problem with ‘twin one’ and that we’d need to return for weekly scans. What I do remember though is that Elaine was in the consultation room along with the consultant and us and showed real empathy for us both. Over the coming weeks we saw Elaine and the consultant lots of times, and what always struck me was that she helped put us at ease as much as could be. Hard to say how but perhaps it was the benefit of consistency – it was someone who had been in there throughout.
Anyway, on 3rd September 2010 at 4.43pm Twin one, followed seconds later by twin two were born by C section , 7 and half weeks early and, in Isaac’s case, fighting for life. The boys went out of the delivery room with us having had the briefest of glances of them and that was that. I remember going back to the post natal ward with Lynsey and feeling like it was all wrong me going down to NICU on my own to see them, about 90 minutes after they were born. I took photo’s and came back to Lynsey but as she was still anaesthetised I couldn’t take her down to see them.
I recall, unfortunately, a midwife (a sister on the ward) saying to me at about 8.00pm that visiting was over and the ladies needed to get some rest – like I was causing a disturbance? – and that was it, off home. 28 miles in a daze back up to Chorley.
Lyns was unable to go to see the boys on NICU of her own accord ; she needed wheeling down.
After meeting Elaine on Tuesday I texted Lynsey a picture of her (I’d quickly asked her for a pic so lynsey could know who I’d been speaking to) and lynsey’s text back to me says it all:
“I could NEVER forget her as she was the sole reason I was able to see the twins on the day they were born as the other midwives said they were too busy to wheel me down in a wheelchair and it was late at night…but they were happy to ring NICU and check how they were!! I wanted to see them and got really upset and Elaine took me down herself!”.
So was Elaine just doing her job? (that’s what she says….) Maybe she was, but where in her Job Description does it say to go the extra mile? Was she already busy? Undoubtedly she was. Did she show compassion and empathy? More so than anyone else. One thing she would have had no idea about is the impact that her actions made, or the impact that inaction would have had. Without a doubt she would have had no idea that she was creating a memory that would last a lifetime.
Tiny acts. Communication acts like consultants who give a time that they’ll meet with you then keep it, and email you back with answers to the questions they couldn’t answer at the time like Isaac’s Paediatrician does. Communication acts like the people who speak to Isaac when we enter a clinic appointment rather than talking straight to us, his parents. The nurse who took the time to explain to Isaac’s big brother what all the equipment around him in NICU did. The ENT consultant’s secretary who makes the admission date fit with our work times, who squeezes Isaac into a clinic when there’s a complication. The professionals who may have had a throughly naff day but never let it show when I rang with yet another job to add to the list.
Little acts of courage. People who realise that they don’t work for their boss, they work for Isaac. The nurse who disturbed an on call registrar in the early hours of the morning to change Isaac’s reflux medication when she was told by a sister to leave it until the morning. The paediatrician who prescribes the omeprazole in solution at £180 a dose because she knows that prescribing it in tablet form to be ground up is a nightmare for families to do amongst 6 other medications. The people who justify why, not say why not.
Isaac needs competent people, people who know their job inside out and therefore can make decisions based on individual need not process. But please, the people who have provided brilliant care for Isaac may be a G3, a G6, an 8A or who knows what – Isaac doesn’t read your name badge. Neither do I. Your competence is defined in that moment, not what you’ve done before or after. In the same way that the nurse who on meeting Isaac for the first time in NICU leaf over his cot and said ‘Is this Isaac…..oh and he’s on CPAP…..right…..hasnt he got a small chin’ has left an indelible marker that she couldn’t find her own bottom with a map regarding her competence, when you get it wrong, you need to know you’ve got it wrong.
Isaac needs above all, Care. He is a little boy facing an uncertain future both in terms of life expectancy and we cannot, cry and try as we might influence that. What we can do is remove the uncertainty about his quality of life. We as parents and friends can do what we can but the rest, well the rest is in the gift of others. If you go away from today committed to driving the culture of your team to make next week 1% better for every Isaac you work with then my journey from the north west is a success. If you’re unenthusiastic because you’ve seen it all before then please, I hope you understand, Isaac hasn’t seen it all before.
Thanks for listening, I hope you enjoy the day, if anyone would like to talk more, i’d love to talk to you.