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/

 

used to be

I used to be a teacher, a rower, a daughter. I used to be employed, and healthy. I used to be a blogger.

Now, I’m not quite sure.

I’m busy and motivated and exhausted. I’m a volunteer and a dance mom and an occasional blog reader. I still have ME, I juggle all the things, and I sleep.

It used to be that I’d go for a walk and tell you about it; taking pictures in the museum and sharing my random thoughts on creativity or elephants or the chap who sounds just like Sir Humphrey.

You’d see my new purple nail varnish, or a tidy room, or the silly thing that made me laugh while my family rolled their eyes in despair.

Then I shared less music and more ranting. I’ve bored myself with the ranting.

Brexit leading to threats of war, Trump, NI politics, the Irish police– all of these are beyond parody. Unbelievable behaviour from those who simply don’t care about the rest of us. We appear to be beyond all norms of acceptable behaviour and nobody is being held to account. I don’t know what happened or what to do about it. (Social media is probably not the solution.)

I’ve felt defeated, and pictures of pretty things haven’t helped. I’ve been missing my wee mate Jake- always one to distract me from too much introspection when we were home alone. I’ve taken on extra responsibility with our charity, but nobody wants to read that sort of detail.

Alternatively, I’ve had loads of new experiences, I’ve joined a political party (in an attempt to divert the ranting into something constructive), I’ve got access to spontaneity via a new to me car, and it’s spring. The world is coming back to life, maybe I should, too.

 

 

I used to be in a bit of a rut. Bear with me as I work my way out.

Q

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.