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.


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.


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?

the 46.9%

So maybe I’m naive. Maybe I don’t know enough about US politics.

I went to bed in a huff during the election count. Things were shifting in Florida, and reality began to dawn. A few hours later and it was over. Brexit +++ indeed.

I was shocked, and deeply shaken. Of course, it was always a possibility. My head knew it could happen, that it was more likely than I wanted to believe, but my spirit wasn’t ready for it. The fibre of my being refused to accept that misogyny, racism, xenophopia & ableism, so clearly expressed, could win. That people would choose to ally themselves with a vulgar bully. That that’s who they’d want to be their representative in chief.


As the day went on, breakdowns of the vote became available. My mind was boggled by the majority of white women who voted for Trump. Do they not believe they deserve better? Are they happy to be seen as objects for male pleasure only?

There was an interesting discussion on TV last night- the summary being that US voters didn’t take Trump literally (nobody believed he’d do what he said) but they did take him seriously (he speaks to us). Outside the US, observers took him literally (he thinks he’s going to build a blimmin wall) but not seriously (he’s a buffoon).

So perhaps if people didn’t believe he was going to deport Muslims, they thought it didn’t matter that he said he would… That’s a remarkable failure of empathy. An incredible thoughtlessness towards all the ‘others’.

Maybe that’s why 46.9% of those who could vote, didn’t. Maybe they thought that Trump was all mouth and not that dangerous because he wasn’t serious. Maybe they dislike Clinton so much for being still married to Bill/ open about her taxes/ good at her job/ whatever (I simplify of course, but most of the criticism of her I saw seemed to be because she’s good at being a politican rather than legitimate objections to her actual policies) that they just thought, “Nah, I can’t be bothered.”

Some people will have been sick, or unable to get to a polling station. But not nearly half the eligible population. Most of those will have decided not to vote, not even for the 3rd party candidates. It’s not like they didn’t know the election was on. There’s been at least 2 years to get ready, think about it, listen to the candidiates, mark the diary with *vote*.

Is it because they think their vote doesn’t matter? Is it that they don’t care about the world they live in? Before, Trump was supposed to be speaking to the disposessed (which I never understood), but it was the educated middle and upper classes who, predictably, voted for him in droves.

Are there 46.9% of the population so disconnected from the world that they didn’t see this election as important? That they didn’t know or care that a reality TV billionaire bully was going to terrify women, children, people of colour, LGBT people, those with disabilities and non Christians? And god help those at the intersections.

Trump isn’t one for hiding his light under a bushel. Since he entered the race, this election has been all about him. Every day, in every way, he affirmed the adage about there being no such thing as bad publicity. He said and did previously unacceptable things, and not enough people cared that these were unacceptable. They supported him or they did not oppose him. They may have been good people, but they did nothing.

And so, it’s all ok now. It’s ok to be a sexual predator. It’s ok to mock the disabled. It’s grand to talk about nasty women and bad hombres. No problem with threatening your opponents with violence or jail. It’s Trump world and the bully has won.

But, no.


There is such a thing as society. There is love and goodness and support for others. We have to hold on tight to it, to nuture it and let it grow. I have surprised myself by using biblical language- fighting the good fight, being a light in the darkness, whatever you do to the least of my brothers etc- but that’s the power of poetry, oral tradition, and primary school. Others will have different touchstones they had thought long forgotten.

I struggled yesterday to find a way out of the fug. I wanted to have moved past disbelief and rage by the time Girl1 and Girl2 came home from school. I wanted to be able to articulate a way forward for us. I wasn’t quite there, but I was trying. Then we watched Clinton’s concession speech, and it was just what we needed. Grace, dignity, truth, hurt, power & resolution. She spoke to us all, even when defaulting to the bible. She spoke to us all, wearing suffragette colours. She spoke to us all, to comfort, support and motivate, while dealing with what must be personal devastation.


Hillary went high. We must too. We must reach out. We must engage. We must remember that politics is about people, because without people there is no chance of change or progress. We have to make a difference. We must participate.

Don’t pretend it has nothing to do with you. Don’t believe that your opinion doesn’t matter.Don’t believe that you are not worthy.

Don’t be the 46.9%. Believe in yourself.