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?

the big list #read4saca

It’s been a summer of rain, gadding about, enjoying a new caravan at the seaside, & recruiting staff for the charity. (Big step, big excitement. Why yes, that does add to my anxiety.)

And reading. I’m usually reading. It keeps me sane and distracts me from the world. I’m less happy when the brain fog won’t let me read, This year I decided to put my habit to some use. My friends at SACA, a charity supporting people living with the rare conditions syringomyelia or Chiari syndrome, were asking people to participate in a marathon, no sweating required. Read 26 books in 12 weeks and either gather sponsorship or make a donation. In fairness, I couldn’t ask anyone to sponsor me for something I love to do, that sustains me, so I made a donation when I got to September.

Then, M, more organised than I, asked if I’d share my list. A list. Why hadn’t I made a list? Luckily, I’d done a lot of the reading on Kindle, and could count back. There were paperbacks left in holiday houses or airports that I can’t remember. Those I recall got added, and I made it to 26. I completed a marathon! The runners among you may stop laughing…

In no particular or predictable order

Skintown by Ciaran McMenamin

Eleanor Olyphant is Completely Fine by Gail Honeyman

Swing Time by Zadie Smith

Last Rituals by Yrsa Sigurdardottir

The Other Us by Fiona Harper

Frozen Moment by Camilla Ceder

Heaven Field by LJ Ross

Rather be the devil by Ian Rankin

Miller’s Valley by Anna Quindlen

I See You by Clare MacIntosh

Falling & The Beach House by Jane Green

Paper hearts and Summer Kisses by Carole Matthews

Dead Men’s Bones & Written in Bones by James Oswald

The Janus Stone & The Crossing Places & The House at Sea’s End & The Chalk Pit by Elly Griffiths

Summer at Bluebell Bank by Jen Mouat

The Gingerbread House by Kate Beaufoy

The Girls by Emma Cline

How to Stop Time by Matt Haig

Meet me at Beachcomber Bay by Jill Mansell

The Pact by Catriona King

Truly, Madly Guilty by  Liane Moriarty

The Other Mrs Walker by Mary Paulson Ellis

HellFire by Mia Gallagher

Some of these were happy finds as I browsed in bookshops, some were long awaited, some simply cheap. I discovered new-to-me writers and revisted the familiar. There’s gritty crime, fluffy fun romance, and heartbreaking drama. I actively disliked only 2, and one of those was a bookclub choice.

What have you been reading lately? Any recommendations?

 

If you’re motivated to read, sponsor or donate, the #read4saca challenge is accepting donations until the end of September. They’d love to hear from you.

 

Why bother?

Now, there’s a dangerous question, & one that’s been in my head a lot recently.

I want to be useful, doing things, making a difference. I need to rest, recover, not get involved. Sometimes I balance competing demands. Sometimes I run out of steam & interest. Sometimes I want it all to stop.

I’ve spent years trying to be heard and in the process have become a usual suspect. I’m on a list somewhere, invited along to things, my opinion apparently sought. Of course I’m flattered, but sceptical. I can’t keep track of all the agendas in the room. I’m not being paid to be there- is it a good use of my limited energy, or a fig leaf for someone who has a boss?

I can read books and walk on beaches and ignore the world. That feels good for a while. Then I have to get back to doing the things I’ve had to fight to be able to do.

And I wonder if that’s the right thing for me.

 

Thanks to David Gilbert for the post that prompted ‘why bother’ https://futurepatientblog.com/2017/05/14/lets-talk-about-death-breaking-the-taboos-that-surround-suicide/

 

thoughts on co-production

Change is happening in the NI health system. We’ve had a report and a ‘vision’, and our Executive (government made of different parties) committed to the change.

As part of the transformation, our Department of Health have recently discovered the concept of co-production, and don’t quite seem to know what to do with it…

Step 1: Convene a working group and get them to agree on what co-production is. Good luck with that. Also, produce guidance on co-production to inform transformation throughout the health and social care system, across multiple organisations. In 4 weeks. Don’t forget to include some patients and carers on the group. Long days in pokey rooms are preferred. Watch how co-productive methods are modelled. Or not.

Step 2: Be sure to use words like ‘mutuality’ and ‘reciprocity’. Nobody knows what they mean, so you have the opportunity to seem very clever if you can explain them. This is not a form of excluding people and their possible contributions. Definitely not. (It is.)

Step 3:Thank the group for their contribution, and clarify that it was simply a first draft. Lots of other people need to be involved, starting from scratch again. No need to share that draft that patients, carers and staff actually co-produced in difficult circumstances.

Step 4: Give multiple presentations using the video The Parable of the Blobs and Squares. Patients and carers *love* being called blobs.

Step 5: Make sure the presentations refer to doing things differently. It is important at this point to continue to work in the same way.

Step 6: repeat step 2

Step 7: Patients and carers give up their time to participate in co-production and other Personal and Public Involvement activities. You should provide coffee, sandwiches, petrol expenses, and a lot of boredom. Make sure presentations are long, and largely irrelevant. That will make sure that you have a) supported patient & carer participation, while b) making sure that they will not want to ‘participate’ again. Tend towards providing all assistance short of actual help.

Step 8: When discussing principles of co-production, be sure to talk about use of language. (repeat Step 2 as required, for clarity.) At a push, ‘shared decision making’ may be referred to.

 

Guiding principle to be used in all stages of the process. Above all else, never refer to ‘power’. Never say anything like

Co-production is where power is shared, different expertise and experiences are valued and considered in the development and delivery of public services, and trust and partnership working are at the core to improve outcomes. It will only work if there is a fundamental recognition of the power relationships that accompany the process.

 

Given that our coalition Executive has fallen apart because of an unwillingness to share power, to trust or to work in genuine partnership, it is perhaps not surprising that some in the Department appear to be challenged by a new approach. The sad thing is that effective co-production is happening in pockets and projects at all levels in health & social care- it’s nothing to be afraid of, but it does need supported and resourced.

We need to do things differently. We need to share power and decisions. We need to listen & be heard.

We have some way to go.