Co-production Week 2017

Co-production Week 2017

Thursday, 7 June 2018

Unite with us against dementia. We get it and – together - we will do it, help people live better with dementia!

By Lindsey Ambrose, Dementia Voice Lead, Alzheimer's Society. 

Alzheimer’s Society recently had our first ever “Dementia Action Week” – a wonderful celebration of co-production and public involvement! A bright, credible and optimistic event demonstrating how, more and more, we are working together – united! - with people affected by dementia as active partners and consultants, wherever they are in their dementia journeys.

It’s a time of fantastic change, with great commitment to including people, sharing power, and learning from experts by lived experience in recruitment, training, campaigns, fundraising... In 2017, our bright, optimistic, branding was launched thanks to people affected by dementia across the UK. The voices of people affected by dementia decided our dementia statements – confident, clear, rights-based, expectations used in our ongoing campaigns work to Fix Dementia Care.

For Dementia Action Week 2018  Marketing & Communications colleagues shaped flagship communications and literature working in partnership with, and learning from, over 500 people affected by dementia across the country, finding out important small actions people take every day that make a big difference to living well with dementia.

We have ‘dementia voice’ opportunities all year including:

Our Research Network: around 270 volunteers who are former and current carers, and/or people living with dementia. No scientific knowledge or research experience required. They help researchers learn to talk to the rest of us about their work. They help decide what gets funded, monitor projects, and do lots more too, if they want! Interested in joining? We’d love to hear from you!
    Want to join us? Please contact Jamie Tulloch email:

Focus on Dementia Network: about 60 groups of people living with dementia, across England, Wales and N. Ireland. They work:

  • with staff from Alzheimer’s Society: improving processes, products, publications,… ; and
  • helping organisations – theatres, leisure centres, hospitals
  • Network members have co-produced their service specification, resources for members, facilitators and people wanting to work with them. 

We also welcome volunteers to help us continue to build “dementia voice” into our work.

Want to join us? Please contact Kim Nguyen email:

Wednesday, 30 May 2018

How Early is Early?

By Kevin Minier. Independent carer.

Cost-effective co-production must ensure that we do the right things in the right way.

This means that the end-user of services must drive the need for change. We can no longer acquiesce and relinquish our responsibility to health and care managers.  Currently those managers can often determine what needs to change; and this might have to be based on the premise of short term finances. Under these circumstances, real change can be just too difficult. 

I believe this is because the authorities have limited influence and are only able to impact the services that they are directly responsible for. This means they are limited to dealing with symptoms and not the root problem.  What I also believe is that the end users and their carers are in a key position to highlight the root cause of the problems that they face. And we call this co-production.

Using co-production to contain costs

My proposal is that service user and carer groups are proactive in defining the root cause of system issues regarding integrated health and social care. Of course there is a need to contain costs and one way to do this is to work up proposals from lay people. This reduces the need to engage more expensive professionals, and it can also take them away from performing their desperately-needed duties. This is especially so if it means taking staff and clinicians from their front-line activities.

So, local patient and user groups can do things like: be proactive; get trained up in co-production facilitation; and create proposals for new integrated models of care. They can then get professionals, clinicians and other frontline staff to critique the proposals that they have come up with. These proposals, can, in turn, be presented to those ‘decision-makers’ and the proposals can be revised and given timescales so that they can be implemented.

It’s also important to create a co-production steering group of professionals and experts-by-experience to develop those things that can be delivered- and for them to monitor progress. Barriers and bottlenecks can be reviewed by all concerned.

Revolutionising models of care

I believe this process will facilitate programmes for change to address those root issues, thereby providing solutions that can revolutionise models of care rather than merely patching over symptoms. The latter adds cost to a process and rarely results in quality of care and customer satisfaction.

This process can surely be more cost-effective as it more effectively uses combined user / carer / professional /clinical resources when developing and implementing new integrated models of care.

Tuesday, 22 May 2018

Hammersmith and Fulham: leading the way with co-production

By Victoria Brignell. Member of Hammersmith and Fulham’s Disabled People’s Commission.

On June 20th, Hammersmith and Fulham Disabled People’s Commission will officially launch its report calling for co-production in the way the council operates. If it’s implemented fully, it will have far-reaching consequences for how the council is run and how it delivers services to residents.

Entitled Nothing about Disabled People Without Disabled People, the report’s key aim is that disabled people should be actively involved in directing all aspects of the council’s work.

A cutting-edge initiative

The DPC was set up by the council in September 2016 and over the year that followed it carried out an extensive investigation into the experiences and views of local disabled people. Led by Tara Flood, who has been a disability rights activist for more than 20 years, the ten members of the DPC are all disabled and lived in Hammersmith and Fulham.

It was soon clear in the DPC’s research that not only do services need to be improved but local disabled people want to take part in making the decisions that affect their lives.

The way ahead

Now that the report has been published, the next stage, of course, is to put its recommendations into practice. No one is underestimating the scale of the challenge ahead. It could be argued that producing the report was the easy part. The real effort starts now.

What will undoubtedly help is that the report has the full backing of Steve Cowan, the council leader, and was approved unanimously by the council’s cabinet in December.

Disabled residents have already been closely involved in drawing up the plans for Hammersmith Town Hall’s refurbishment. More significantly, a implementation group is being established, made up of disabled residents and senior council officials, to drive forward the co-production agenda across the council.

Tara Flood comments: “Focusing on co-production was a risky move for the DPC, not because co-production is a bad idea – far from it – but because co-production has been much misunderstood. The DPC report recommendations set out all the strategic changes that need to be implemented by the council if real and lasting co-production is to become a reality. There is no doubt we’re doing ground-breaking things in Hammersmith and Fulham and it has been a privilege to be part of it.”

A trailblazer for other councils

Meanwhile, what’s becoming increasingly apparent is that councils elsewhere in London and beyond are starting to notice what’s happening in Hammersmith and Fulham. The pioneering changes underway in this West London borough are sending quiet ripples through local government.

The history of government is full of examples of reports which promise a great deal but deliver little. Members of Hammersmith and Fulham’s DPC hope that their report will be different and that co-production will soon be a reality in this part of the capital at least.

Wednesday, 16 May 2018

Fulfilling Lives South East - Creating our research together

By Kerry Dowding, Research and Evaluation Officer, BHT Fulfilling Lives 

In our project we have a team of peer researchers, who are volunteers and paid staff with lived experience of multiple and complex needs. They interview clients once a year, to gather feedback and input about the project. 

The problem? 

The researchers told us that some of the questions didn’t make sense to them or the clients, and as a result, the quality of feedback we were getting could be quite variable. We decided to co-produce a new version of the survey, with everyone’s input. 

The solution...

We started from scratch by asking staff and volunteers at all levels of the project what they would like to know from our clients. A selection of questions were drafted from these topics, reflecting everyone’s input equally, and covering a range of issues. We finally went back to the peer researchers (those in our project who have lived experiences and would be conducting the surveys) to ask about how to word the questions in a way that was clear, approachable and non-stigmatising. 

Co-produced survey

The feedback from clients, interviewers and staff has been incredibly positive since we co-produced the new survey as a team. Clients now understand all the questions properly, and interviewers feel much more confident using a survey they helped to create. From a research perspective, this means the depth and quality of information is much improved, and more useful to a wider range of people within the organisation. 

And it was all done using co-production. 

South East project 

Wednesday, 2 May 2018

Nothing About Us Without Us

Patrick Wood on the need to keep it real in co-production

Simple but revolutionary

Co-production is a simple but revolutionary idea. It’s about developing more equal partnerships between people who use services, carers and professionals with the aim of providing support and services that meet the needs and respond to the wishes of people who access health and social care provision.


I fully support SCIE’s approach to co-production, which is grounded in the principles of equality (everyone has assets), diversity, accessibility and reciprocity (or getting something back for putting something in).

More than a buzzword

There’s a lot of talk about co-production in statutory and voluntary sector organisations at the moment, which indicates that the concept is moving towards the mainstream. Whilst this trend can be broadly welcomed, we need to be aware of the associated dangers. Sadly, I’m aware of initiatives supported by large service providers that use co-production as a buzzword in the aggressive pursuit of funding, which ultimately works to the disadvantage of the communities they purport to serve.

We need to remain vigilant to ensure that co-production doesn’t end up as an empty word or co-opted approach to maintaining the status quo that has everything of real value stripped from it. As my old friend and fellow long-term survivor activist Terry Simpson says, mainstreaming has diluted the reach and potential of advocacy and peer support, and you can also see a similar limiting force at work in the history of the mental health recovery movement and the provision of talking treatments in this country.

From strategy to delivery

Sue Sibbald, the Sheffield based campaigner, trainer and activist for people with ‘Borderline Personality Disorder’ produced a couple of Tweets during last year’s National Co-production Week that get right to the heart of the matter:

“Co-production is not asking me to come along and tell my story nor is it asking me what you think of your great idea... It's about me being there from strategy to delivery and you need to be aware of the power imbalance...”

Patrick Wood: Mental health training, advocacy, influence and participation, peer support and co-production. Co-ordinator of SUST (Sheffield User Survivor Trainers).

Monday, 16 April 2018

Co-production: not rocket science?

By Pete Fleischmann, Head of Co-production, SCIE 

Co-production is about people who use services and carers working in equal partnerships with professionals to design and deliver services; and I don’t often hear someone arguing over the value of co-production.

I do however, hear people say that it isn’t, or shouldn’t be portrayed or perceived as, rocket science. But if it is so simple a concept, why aren’t most health and social care services delivered in co-production?

I think the answer to this question is in two parts

Firstly people are complex and contradictory, have different working styles and are very diverse in many other ways too. So working in really equal partnerships is not, as it turns out quite as easy as it sounds on paper.

Secondly the systems that we have created to provide and health and social care systems are fiendishly complicated. So introducing co-production into these systems and trying to get real change is a pretty tricky business. 

Training days

To do co-production well it is important that everyone involved has the same understanding of exactly what co-production is. We have two training sessions in the lead-up to Co-production Week:

Co-production: an introduction. A CPD-accredited course giving an introductory overview of co-production and how its principles can be applied in the workplace.
Paying people who receive benefits training course. Giving an overview into best practice in terms of co-production and the benefits system.
If you go to the links above, both courses have feedback from delegates who have just finished a day’s training.

So, is co-production straightforward? Well, for instance, it’s not easy making sure that a meeting or activity is accessible, especially if the people who are attending have a wide range of access requirements.

So actually doing co-production well can have its challenges. But we’re here to help. As well as our training we have a wide range of other co-production resources. And please get involved in the third annual Co-production Week from 2 July 2018. All of this can help you find that, with a bit of support from us, co-production isn’t always rocket science.

Tuesday, 10 April 2018

Guidance on co-producing a research project – a first step

By Gary Hickey, Senior Public Involvement Manager at INVOLVE (About INVOLVE)

Gary Hickey 
Last year I made a pledge at SCIE’s co-production event to develop some INVOLVE ‘Guidance on co-producing a research project.’  I’m delighted to be able to say that we did it!  The guidance was co-produced with colleagues from across the National Health Institute for Research and beyond and is our first step in moving toward clarity on what is often a contested issue.  

It was an enjoyable, if difficult, exercise.  We have five key principles:

  • Sharing of power 
  • Including all perspectives and skills
  • Respecting and valuing the knowledge of all those working together on the research
  • Reciprocity
  • Building and maintaining relationships.

We have drawn on the expertise and work of others to develop this guidance.  We asked many people – who often had a great deal of experience in co-production - to comment on the emerging principles and key features. So thank you for your contributions and I hope you can see your comments reflected in the resulting guidance.  

Our intention is not to promote co-production as a ‘gold standard’ or preferred approach to involving the public in research.  Rather we just want to further prise open the co-production opportunity.  People can use the guidance to steer and critique their own, and others’, work.  Our next step is to collect examples of co-produced research which show our key principles and features in practice.  

Please do send in your examples 

Co-production presents challenges to how we think about, fund, do and manage research.  Indeed, when developing the guidance some people told us that the challenges are insurmountable and that we should give up.  I’m pleased we didn’t heed this advice. As Martin Luther King once said:
‘You don’t have to see the whole staircase, just take the first step.’