Candour. For the children.

Candour: open, honest, frank, the quality of being honest and telling the truth, especially about a difficult or embarrassing subject. All in all, a good thing.

Openness and honesty are some of the Nolan principles of public life, the ethical standards those working in the public sector are expected to adhere to. Openness and honesty are key values for health and social care in NI. Everyone agrees. No big deal. What are you on about, Speccy?

Imagine this. The worst thing. Your sick child is at the the regional children’s hospital. They may have been sent there from somewhere else, because that’s where the experts are. Something happens and your child dies. Imagine the horror, the grief, the loss.

What if information about your child’s treatment was deliberately withheld from you? What if there was a cover up? What, even, if you discovered that your child’s death was avoidable?

Imagine that your child’s death was avoidable and that the behaviour of individuals contributed to their death. What if the arrangements to ensure quality and the culture of the organisation contributed to the death?

Imagine that very experience happening to other families.

The loved ones of Adam Strain (4), Raychel Ferguson (9), Claire Roberts (9), Conor Mitchell (15), and Lucy Crawford (17 months) don’t have to imagine. Those children died. Their deaths were avoidable. Some of the people involved in their care lied. Rather than tell the families the truth, people acted to protect reputations and avoid blame.

Adam, Raychel, Claire and Conor. Lucy’s family chose not to release a picture.

People who choose to work in health and social care generally do so because they want to help, support and care for others. They don’t set out to be the bad guys, but shit happens. The organisation wins.

Clearly, it’s not just me saying this. Mr Justice O’Hara spent 14 years investigating what happened to the children. It took so long because the health organisations involved were reluctant to release any information. 14 years.

The O’Hara report is a gripping read. Gobsmacking. What happened was truly awful. O’Hara didn’t just tell the tale, he provided 96 recommendations to ensure it couldn’t happen again.

Key recommendations are for a legal Duty of Candour, for both organisations and individuals. O’Hara’s experience taught him that professional ethical guidelines/ standards aren’t always enough to protect patients. That’s why he recommended that it should be a criminal offence to breach that duty.

“All that is required is that people be told honestly what has happened, and a legally enforceable duty of candour for individuals will not threaten those whose conduct is appropriate.”

The Department of Health have been leading preparatory work on the proposed Duty of Candour. Now they want to know what you think. Do let them know.

Do you want medical professionals & organisations to be able to continue to withhold or destroy information, mislead, or lie when something goes wrong. Or do you simply want to know the truth of the thing?

pesky pets

Pah!

It’s not been a good day.

The grumpy old chap who had such a large part of all our hearts died  today. All of a sudden. He wasn’t in form- he had no oomph- and we were going to phone the vet for an appointment, when he just keeled over.

Spurs Fan demonstrated heretofore hidden agressive driving techniques, but it was too late. Jake didn’t make it to the vet. He was gone by the time we got there; he was undoubtedly gone before his head hit the floor, but we didn’t want to believe that.

We came home empty handed.

As with all things, it could have been worse. He could have been home alone. I could have been the only person here. Our friends who looked after him on Monday night and Tuesday morning could have found him. Instead, because it’s half term, we were all at home. We were able to satisfy the urge to do something, however pointless. We were able to pet him and hold him and talk to him.

He’s never been in great health, but when he was checked out last week, all he needed was an antibiotic, which cleared up his tum issues. We expected him to keep on pottering about for a good while yet.

My days at home will be longer and lonely.

I just made a toasted cheese sandwich and had no gentle nudge on my leg. No shake, stretch, or pitter patter when the fridge door was opened. When I leave the house in a little while I’ll not say “Bye, Jake. You’re in charge.”  I’ll not need to check on him first thing, or wonder where the poo is, or forget to let him in. He won’t knock over the footballer gnome (doesn’t everybody have one?) or stand in exactly the wrong place in the teeny kitchen. He won’t choose the bits of newspaper for the fire, or complain about the  television. He won’t or sniff every leaf, or grumble at each passing dog.

He came to us when he was about 8, a lifetime behind him. He needed a quiet house, with somebody about most of the time. He didn’t like fuss or noise or contact he didn’t initiate.

He was our wee old man, who got the blame for all the random smells.

He was one of us.

The wee pet.

life saving duty

Jake was getting on and anti social when we got him, four years ago. He protected us from swimming pools and violence on TV, from passing strangers, and from Grandad. He guarded me against bookclub buddies, making sure that anyone who movedin their seat got a Very Hard Stare. He made it clear that approaching dogs would be eaten, and that he shouldn’t be let off his lead.

Now he’s properly old, and blind, and he doesn’t care about what’s happening on TV. Visitors can step over him without causing a stir. Bookclub buddies are ignored. Dance mates are warned about being inadvertently friendly. An unthinking pat can cause much aggravation, but Grandad may be permitted an odd pat. When he least expects it. Jake will approach and welcome displays of affection, but only when he feels like it.

And we’ve discovered that doggy health is more complex than we thought. He’s been drinking more and eating less. He’s either in a deep sleep or pacing about, as if there was a sausage somewhere he can’t find. We thought he’d probably need his insulin uptake boosted, so took him to the vet. Hmm, said Peter, bring him back in the morning for a blood test some hours after he’s eaten. Hmm, said Peter, I want a better look at his eyes. Hmm, said Peter, I may do a kidney function test.

We spent the evening reading about doggy renal failure.

We were not prepared.

Yes, we need to top up the insulin again. No, there’d not be a kidney function test just yet.

Instead “It wouldn’t be fair to keep him going like that. With his very bad eyes. They’re very painful. Never mind the diabetes, or the kidneys. The eyes are that bad.”

Whaty what what?

Jake has always had gunk about his eyes, which gets removed when he’s showered. The gunk got worse over the past few months. We noticed, but thought it was old age. We never considered that it could indictate something serious. Dry eye. No tears being produced to clean and lubricate his wee unseeing eyes. Now, scratched and painful eyes. “If I saw that dog out walking, with those eyes, I’d wonder about his vet.” And we, goofy people, had no idea. Our lovely grumpy pet is in so much pain that it would be better to put him to sleep, and we knew nothing about it.

So now, we’re in doggy ER mode. Superduper ointment in his eyes 3 times a day for 10 days to try to kickstart his tear ducts. I wonder if that’s even possible, or if Peter is giving us time to get used to the idea. Giving us something to do, however useless, to assuage our guilt. Giving us time to show our love to the boy by holding his muzzle tight shut, his paws tucked in, while we stick ointment in his sore eyes. (Yes, it’s a 2 person job.)

Giving us a chance to redeem ourselves. Giving us a chance to forgive ourselves.

ch-ch-changes

I was 15 when John Lennon died. I remember the shock, sitting on the bed with my oldies, listening to the morning news with disbelief. No, surely that’s not possible? Dead? That doesn’t make sense.

This morning, Spurs Fan woke me with the news that David Bowie has left us, and I felt just like I had 35 years ago.

I wasn’t a Bowie fan when I was 15- that came later. I met JWN at university and we combined our record collections; my Beatles, Springsteen and Ultravox to her Bowie and Velvet Underground. I learned a lot, and loved it all.

Bowie was there, always, it seemed. Where there was creativity, theatricality and fun, there was a hint of Bowie.

Of course, Bowie’s influence is beyond music- Caitlin Moran calls it…

bowie

But where to start today? I’ve spent hours with 6Music listening to much wonderful music by Bowie, influenced by Bowie, and which influenced him. I’m hearing old interviews, and bereft broadcasters and listeners sharing tales of humour and kindness. A man who did things his own way, and enabled others to do the same.

Thanks, Bowie. The stars will look very different today.