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.





step 1: create a charity

Life experiences, circumstances and interests shape who we are, who we aspire to be, what we want to be doing with ourselves.

I’ve worked in education, in youth training, for a criminal justice charity. I was a human sign post/ volunteer receptionist at the regional cancer centre. I’m still interested in the issues affecting those sectors, but they’re no longer my focus.

Now it’s all about the rare diseases. We’d never heard of Progressive Supranuclear Palsy until Herself was diagnosed with it. The consultant’s face was sombre, but he didn’t give us any other information. The GP suggested we look it up on the internet.

As it turned out, we were lucky. We found a helpful and informed charity, with a proactive member of staff living locally, a support group and a telephone helpline to a specialist nurse. There are 20- 30 people in Northern Ireland diagnosed with PSP- what if you were the only person in the British Isles with the condition veryrareindeedgobbledygookitis?

There are about 6,000 rare diseases, those with an incidence of 5 per 10,000 or less. One in 17 people will be diagnosed with a rare condition at some point in their lives. Collectively, rare diseases are not rare. Unfortunately, that’s not how it feels when a loved one is diagnosed with a disease nobody’s ever heard of.

Last year, some volunteers and staff from the local health charities for rare diseases approached Rare Disease UK and the Patient and Client Council to see if they could support us in exploring a closer working relationship, to see if there was value in working in concert to address some of the issues affecting us all. We had a workshop and other meetings, and identified 6 priority areas for work. We held a joint conference for nurses and allied health professionals, and had briefing meetings with some politicians.

In January we signed the Northern Ireland Rare Disease Partnership into existence as a company. That means NIRDP will be able to be recognised as a charity, be responsible for accounts and apply for funding to carry out some of its work. 29th February, being a rare day, is Rare Disease Day, on which NIRDP will be launched, along with a PCC report on experience of diagnosis of a rare disease in NI.

We want to support families; to educate health and social care providers; to lobby and build key relationships so that rare disease issues are fully taken into account by policy makers; to ensure better co-ordination of services, and access to specialists throughout the UK.

We want to change the world. Or at least how some people experience it.

We can only do it in small steps, but we’re starting.