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.





because ‘coping’ is present tense

Life feels like pretending a lot of the time.

Pretending to be sociable.

Pretending to be capable.

Pretending to be healthy.

Everybody else is back at school and I’d hoped I’d be back in my volunteering routines, but it’s not happening for me. I have a long to do list again. I can’t get my head around making phone calls or talking to people I don’t know.

I went to a PSP support group this week only because Ditzy came to the door for me. I did the driving and it was a long enough day. There were giggles and gossip and hugs and sharing. Always exhausting. Always worthwhile.

The next day I left the house again, and I pretended. I had on a colourful top and red lipstick, and apparently that’s all it takes to seem switched on. I chatted about rare disease and advocacy and how people coming together makes a difference.

And I have been low and practically immobile ever since. I have been asleep or watching box sets (downloaded so no actual boxes involved anymore).

When I can’t do all that I want, I feel like I’m failing. That I’m letting people down. That I’m not contributing to any of the household activities. And then I feel bad, because I know better. I know I’m not failing, but feeling is a different thing. I cope better than I used to, but these days remind me of what I tell the medical students- that ‘coping’ is present tense. It’s present and active. I have to keep on doing it. My ability to do so varies.

Yesterday I read a fabulous essay by Melissa Broder, and much of it resonated. Not the open marriage bit (who’d have the energy?) but these words.

I don’t want to be defined by [his] illness. I don’t want people to ask me how he is doing when I see them. I pretend to people, especially to myself, that this isn’t hard. I don’t want pity. I want to be happy and have a good life. I don’t want to be sad. Or, I want to be sad about the things that I choose to be sad about. But I guess that is not how life works.

Sometimes I feel full of despair and cannot figure out why. Like I forget to equate the two things: the illness and the sadness. Then I wonder why I am sad. Then I get scared that my sadness is a free-floating sadness that will never go away. Sometimes I feel doomed.

And then I went back to watching Nashville and wondering when I’d fit in the world again.



he can make a difference

I’ve previously alluded to the vagaries of the NI political system. For now, for a variety of reasons (differing views on welfare/ allegations of corruption/ murder) it’s not working.

We have a number of Ministers with overall responsibility for the effective government of the region who are not in post. They resign their posts in protest at politics (see above), are renominated to the post by their party a few days later and promptly resign again. In out, in out, shake it all about…

Most of the time recently we have been without Ministers for ‘Enterprise, Trade & Investment’, ‘Social Development’, an actual ‘First Minister’ and, a creature previously unknown to me, a ‘Junior Minister’. However, most ire is currently being directed at our occasional Minister for Health, Social Services and Public Safety’. It seems our public and our media care much less about enterprise or social development than about the health service. Not only do we all need to use health and social care at some point, but it’s a huge employer. Many, many, thousands of people work in health or social care services. (Their views may have been captured by this image, stolen by me from a public service union Facebook page.)

simon h meme

We have long hospital waiting lists. Several reviews of services remain unimplemented. Some staff have had delays in getting paid. Nonetheless, the occasional Minister thinks it’s nonsense to think that his absence is having a negative impact on the health system. He’s not a health or social care professional and so he is correct up to a point; the system is still going on, people are being cared for, operations and treatments are going ahead. But, still. The guy at the top joins the long list of people who don’t think that ensuring we have safe, effective and timely health & social care is their responsibility.

The guy at the top leads us to believe that we don’t need a health minister. Perhaps we don’t need any of them? What can we learn from Belgium, who went without a formal government for 589 days? What games are the politicians playing now?

However, maybe Simon is just feeling overwhelmed. Being the guy at the top could be hard enough work, even if he gets most of every week off away from the office, squabbling with the other parties about welfarecorruptionmurder.

I have a plan. A way for Simon to make a difference.

There’s something he could do when he calls into the office every so often to resign. It would make a difference  to 100,000 people in Northern Ireland.

There’s something he could do, easily, to promote: patient empowerment; identifying & preventing rare disease; diagnosis and early intervention; coordination of care; research; opportunities for international collaboration.

There’s something he could do to support families affected by rare disease, currently and in the future.

There’s something he could do to promote the UK vision for rare disease ‘where no one is left behind’.

Many people- patients, academics, health professionals- worked together to develop the NI rare disease draft implementation plan. Our charity organised and lead 6 consultation events and a tweet chat to gather views, learning, and to promote responses to the draft. In January. Nine months later, we’re still waiting. The plan just needs to be signed off now, by the occasional Health Minister.

The guy at the top could make a difference, even when he’s not about much.


observations and learning from this week

One is never too old to be laid flat by the common cold.

Rubbish things happen to those we know and love.

Homework works well when it’s teamwork.

The TV recording box knows exactly the programme you’re most looking forward to watching, and fails to record it.

I may be addicted to Wolf Hall
I may be addicted to Wolf Hall


Just because I put things in the diary doesn’t mean I recognise that I have to turn up in that place at that time.

There are too many dancing competitions (6 days in 3 weeks- guess what fool signed up for that? See point above.)

Our little blind bundle looks cute under the table, but if I move the chairs, he has no idea how to get out.

The magic conference elves are at it again.

I’m becoming a healthcare geek- I was all excited to see that this week’s study guide is available.

Most amazing of all- it is possible to 3D print food. Food, people. That really seems like wizardry. One possible application is that pureed food can be somehow constructed to look like its pre-pureed state via a printer. It could look tasty and appetising rather than, well, brown gloop. How incredible is that? (With luck, it is also edible.)