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.

 

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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.

 

 

 

talking to ‘our own’ politics

I spent Monday afternoon and early evening watching news and social media, and doing a bit of ranting. Then I stepped away from the screens and read my book. But the family, going to beds, didn’t turn off the TV, the news came on… Cue lots of fuming and little sleeping.

We’re having a ‘crisis’. The astonishing chaos, unwillingness to take responsibilty and arrogance at the heart of our political system was laid bare before Christmas. I was agog as I watched our First Minister react appalingly to claims about incompetence made by her former friend and colleague. A ‘car crash TV’ / ‘fetch the popcorn’ current affairs programme.

Arlene Foster was the Minister who oversaw the introduction of the Renewable Heat Incentive. Largely copied from England, the key difference was that there was no upper limit to the amount to be paid out. Since people are being encouraged to use renewable fuel by being reimbursed £1.60 for every £1 spent, the more they spend, the more they will earn. Heating empty sheds can make for a great income, costing the UK approx £1 BILLION over the next 20 years. Ah, sure never mind, £600 million of that is coming from GB, NI only has to spend £400million. Cash for ash indeed.

A series of unconnected facts:

The First Minister is from Co Fermanagh.

The largest supplier of renewable wood pellets is from Co Fermanagh.

No member of the First Minister’s immediate family is benefiting from this scheme.

There was a fire in a shed in Fermanagh this week. It contained 8 of the biomass boilers.

The green area on this spoof map from@LADFLEG equates to Co Fermanagh.

lad-snow

It was suggested that Arlene step aside for a while so there could be an inquiry. No. No. And, again no. People concerned about competence and possible corruption were accused of misogyny. By a political party known to ‘Moo’ at women politicians. One of the party said, in support, that the First Minister was doing a good job, considering her domestic responsibilites. There is plenty of misogyny in local politics, most of it from the First Minister’s own party. The public are not aware of any attempts she’s ever made to challenge it.

Due to the complexities of our political system, the First Minister holds position along with the the leader of the second largest party. It’s a cross community post. Two people. Equal authority. One can’t act without the other. When Arlene tried to speak to the Assembly as First Minister without the support of the ‘deputy’, on the RHI scheme, all the MLAs of every other party left the chamber. She was speaking without authority and up with it they would not put.

Nothing calmed down during the holiday recess, and local politics hit the fan on Monday when the deputy First Minister resigned, citing the RHI mess, other areas of disagreement and ‘deep seated arrogance’ of the largest party.. His party refused to nominate a successor. Unless a whole lot gets resolved in the next few days, we’re heading for another election. Joy untold.

arlene-firepla

Countering claims of arrogance and incompetence, Arlene released a video in the style of the Queen’s speech, talking to her subjects the voters in front of a large fireplace. Cash for ash being flaunted. This was not a mis-step from a PR junior, but a clear statement of what she feels to be important. Arlene. Arlene’s mates. Everybody else can go and jump. She also said that any election would be ‘brutal’, setting exactly that tone. She doesn’t care. She doesn’t care what anybody thinks if they’re not a natural DUP voter. She speaks only to those she thinks she knows. The rest of us are irrelevant or a block to the return of majority unionist rule in the region. There is no desire to explore commonalities, or to consider notions of good governance, leadership or equality to be desirable.

I read an article recently, which I now can’t find to re read/ consider/ credit, about the suggestion that we replace all our politicians by other members of the public. No parties, no elections, but selected members of the public, a bit like jury duty. A decent salary (but no expenses) for 5 years while you develop policies which benefit the public of the area governed. In this muddle, I could be convinced.

I want politics to be about community building, society, working together for the good of us all. Why does that make me feel like a naive fool?