This is what the Act says about the effect the individual can have on the co-production process: “when an individual influences the support and services received, or when groups of people get together to influence the way services are designed, commissioned and delivered”. This statement encapsulates everything that the disability movement have been attempting to do for decades. In the beginning when Independent Living was established in the early 1980s, one of its main principles was that “any decision made about a disabled person’s life should directly include them in the process”. This is exactly where the term “nothing about us without us” came into being. It is also where the whole concept of “person centred approach and thinking” came about.

Co-production features in several parts of the guidance in the Care Act and in particular the section on Prevention. It says “in developing and delivering preventative approaches to care and support, local authorities should ensure that individuals are not seen as passive recipients of support services but are able to design care and support, based around the achievements of their goals. Local authorities should actively promote participation in providing interventions that are co-produced with individuals, families, friends and the community.”

I think another important aspect which also appears in the Care Act is the connection with the well-being principle. I firmly believe that co-production has had such a positive and powerful outcome in terms of what can happen when its dynamic is used in designing services and the impact this can have for the individual. I have witnessed so many times how this positive outcome can have beneficial effects on the individuals involved. It can transform the quality of life, health and well-being of the people who are engaged in this process. Co-production can have a definite effect on the principle of well-being. We can experience and measure this by seeing the impact it has on individuals working together in partnership on an equal basis with different authorities. What can be better than this? I have also seen how this can improve the mental well-being of people who might experience mental health issues. This can be further developed and supported with peer support with people who have been through similar states of being.

In conclusion, one can see how these two essential principles of the Care Act, co-production and the well-being principle, can directly enhance an individual’s experience when engaged in designing services based on their own expertise and insight into their conditions along with other like-minded people.

“Co-production doesn’t feel tokenistic anymore which is a huge change. We aren’t just stoking the engine; we are driving the train.”

Delegate.

Although it can sometimes be difficult to pinpoint the difference that co-production makes to services, participants mentioned a range of ways in which it has impacted on the health and social care landscape.

Co-production has helped to change the mindsets of people involved in health and social care. Some barriers have broken down and people with lived experience are being recognised as experts. It has helped to develop a richness in knowledge, through sharing good practice and communicating with a wide range of people. Co-production keeps things relevant in a rapidly changing world and increases credibility.

The relationship building element of co-production has helped members of the community feel valued and ensured that professionals attend key meetings. It has also played a significant role in promoting the idea that regulatory bodies and guidance should involve service users from the start.

One participant mentioned that guidelines about bedwetting she was involved in developing are still being talked about and used many years later, which has made a huge difference for children, parents and families throughout the country.

Participants also mentioned that co-production has provided opportunities for service users to work with professionals in interviewing students for university courses, and equipped people with lived experience with the skills and knowledge to find employment.

Although effective co-production can require considerable resources at the beginning, it becomes cost effective in the long run, once it is fully set up. Co-production can provide solutions to problems that you didn’t even know were there in the first place.

If the impact of co-production is to have meaning and power, it’s important not to give up, so we must remain persistent.

“The more we do good co-production, the more others will follow. It encourages further co-production.”

Delegate,

Patrick tweets @pwtc_wood

The important point about the festival was to discuss how co-production can transform and inspire positive change.

When I started my own independent living scheme over three decades ago, the reason why I did this was because I felt very strongly that social care and health professionals should not be making decisions about my life, but I should. I was the expert about my life and not them! I think social care would be much weaker without the diverse voices and actions of many people who have expertise, and the experience of using the services. When people with lived experience are involved directly, you can guarantee that the social care services will be far better off than without them.

• Video: John Evans – My Journey with Independent Living and Disability Rights

Over the last 20 years, SCIE has been at the forefront of developing co-production by seriously engaging people with lived experience, which is what attracted me to the organisation. In that time, SCIE has achieved some very important pieces of research and contributed to significant social change, so it has a worthy place in the improvement of society for people with diverse needs. It is vital that people like me are intrinsically engaged in all of its work to implement positive changes for the better.

The 20th year of SCIE’s existence also marks the sixth year of our Co-production Festival, and it is as popular as ever. We had to move the Festival online for the last couple of years, as a result of the COVID-19 pandemic, but this did not diminish the interest in it or its success. It was a different kind of dynamic, but showed the continued importance of co-production which grows more and more each year. It is as inspiring as ever to see health and social care professionals, and people with lived experience come together to celebrate the benefits of co-production in developing better public services.

• Learn more about SCIE’s 20th Anniversary Appeal
• Learn more about National Co-production Week

Three years ago, the Co-production Board met for the first time excited and enthusiastic but not actually sure what co-production was or in fact what the boards purpose was. This understanding took about a year to truly reach a place where purpose and understanding was aligned. Co-production improves the way health and social care services are designed and delivered by putting an emphasis on a more equal partnership between professionals and people using services. Working together as equals builds better relationships (based on trust, respect and understanding) and helps to create services that actually work for the people using them.

• Co-production Week 2021
• Oxfordshire County Council

It is a huge ask to change people’s way of working, for the workforce of adult social care to be on the same level as the people they are helping: and there is one of the problems, the word helping! It immediately creates a power imbalance. What exactly is their job? People who need to use adult social care are some of the most vulnerable in society, social workers are not helping them as such but facilitating their ability to live fulfilled lives within society. It is the power imbalance being constantly challenged, working together as equals that really drives us towards the shift we need. Simply, Co-production is the person who needs the service being involved in all aspects of designing care whether this on a personal basis or at the core of the council through true engagement via commissioning.

Three years on: Are they?

Like all long-term projects, co-production has had its ups and downs not helped by the pandemic and many lockdowns resulting in Oxfordshire Adult Social Care being, like all other local authorities, stretched to its limits. But it’s not all doom and gloom in fact we have made some significant progress Improving co-production practice within the council and across Oxfordshire, Involving more people across Oxfordshire who use services in co-production projects, involvement of people who use services in significant Council meetings for the first time eg Performance Scrutiny and involvement of people who use services in the recruitment to senior positions within the Council. This we are really proud of.

“The local authority is a servant, not a master, a truth which on occasions is too easily overlooked. Vulnerable adults and their carers look to the state – to a local authority – for the support, the assistance and the provision of the services to which the law, giving effect to the underlying principles of the Welfare State, entitles them. They do not seek to be “controlled” by the state or by the local authority. And it is not the state in the guise of the local authority to exercise such control. The state, the local authority, is the servant of those in need or its support and assistance; it is not their master. And any attempt to control is likely to be counterproductive when it comes to a local authority “working together as it must with family carers”. Lord Justice Mumby.

Whilst this is absolutely the direction of travel we need to keep moving in at pace, without doubt, we need to constantly hold a lens up to ourselves by checking challenging and evaluating co-production to ensure that we are able to do more co-design and co-evaluation of services which is essential for continuing to scale up co-production in Oxfordshire.

Senior leaders genuine and real support of co-production practice is what will allow us to plan, design and truly deliver together moving forward. This kind of support is essential to ensuring projects/ pieces of work can actually be co-produced, Without this genuine support and commitment, people end up having to make concessions that compromise the co-production and end up making people involved feel it has been a tokenistic/ pointless exercise. Commitment and ambition will enable us to continue the great work we are doing in Oxfordshire.

Through ‘Our Voice’ and other activities people who have Down’s syndrome are involved in the planning and delivery of services, decision making at all levels of the organisation and evaluating our activities. We think the best ways for people to participate is by creating things, and making decisions together; through co-production.

• ‘Our Voice’ from the Down’s Syndrome Association
• Down’s Syndrome Association and co-production
• Sam talking about one year of the One Voice project

The Our Voice team meet weekly on Zoom to talk about important topics and work on projects together. Due to the coronavirus pandemic we started hosting weekly update webinars to inform people of important change and work that was happening to protect the rights of people who have Down’s syndrome. 28 were held in all. The Our Voice team have regularly presented at these events and shared their stories or discussed updates from the group.

Emotional wellbeing

The ‘Our Voice’ team helped in the development of lots of resources including the hugely popular Emotional Wellbeing resources with the aim to help parents, supporters and people who have Down’s syndrome to support emotional wellbeing. Emotional wellbeing is about how we think and feel and how we cope with life events. It is also about how we deal with our own emotions as well as those of others.

We hope the resources will help people who have Down’s syndrome to feel good about themselves and give them ways of coping when life is challenging.

• Down’s Syndrome Association: Emotional wellbeing, depression and bereavement
• One Voice video: Meet the team

During my autism education career, short lived due to health issues, I performed as many do from all sides of life, as a professional. This is where I say I mask but do not limit to autistic females as I believe many in politics, leading names, even national names do, day in and day out. When I worked professionally in local authorities or professional key conferences in education, the power and topics for agenda was held by the one holding the purse strings. Often the designated event organiser was given instructions from the top in a no doubt methodical and fit-for-purpose way. I had no autistic diagnosis and therefore not believed to be autistic, so spoke on autism in a professional capacity, and my topic freedom was non-existent. The actual accepted autistic voice was often added into events, either as an entertainer or trauma mental health story. Autistic researchers and professionals, apart from maybe one name I can think of, just didn’t exist in the open.

• Co-production Week 2021

After medically retiring, I still wanted to talk about important autistic health issues that have been either neglected, disbelieved or just not known about, yet affects so many of us. This has been my passion over the years and finally I can see some focus of light filtering through the opaque prism of barriers. Once I lost my status and title that comes with a good job, plus health, finance and nearly my life, I found it much harder even with my recent autistic diagnosis to be accepted. I started talking during the beginning of lockdown by webinar and while I could design my talks, the power I had in designing the show casing of it varied widely from really empowering and delightful hosts to those who had no interest in their speakers, subjects or probably much else. Sometimes I never had any feedback afterwards and there can be a huge let down effect.

This Covid era year, the inaugural interdisciplinary autistic research festival/conference was held May 21 over 3 days (IARFestival21). I found out about the IARFestival by accident. I do not have an integrated group of researchers, educationalists or funders to be part of the ingroup therefore felt it highly likely I would not be accepted or for my key topic of symptomatic hypermobility.. I am indebted therefore to Anna Stenning and the other co-hosts, who were open to having unknown people to them on board. I am literal, so when it says research in the title, I was not involved in research at that time, I tend to not apply. The aims of the IARF were perhaps put together as an alternative to the top down heavy research led or International led conferences which we had all been dependent on. This is why I have not asked to talk at other autistic research conferences until recently. It is brave to bring on people who you might not agree with their topic or take a risk with someone outside your circle but include respect and value all perspectives and hopefully see that everyone is of equal importance. I have initiated autistic co-production groups before (SCIE ref blog 2020) and I know on a smaller scale how challenging it can be but the reciprocity for everyone is key and believe that leads to authentic empowerment.

So I was booked and had a very short time to cover what is an absolutely immense topic on symptomatic hypermobility (Ehlers-Danlos syndromes, EDS,JHS) and autism health, social care and employment; in education to help attainment and attendance particularly for missing girls at secondary level. For health generally in the autistic/neurodivergent population and how EDS affects us in employment as we can lose our careers. I don’t get funding for this as it is all voluntary, but I know the significance of it and I recently created and led the first UK school toolkit for EDS and JHS with national charities.. For many years autism and actual physical health issues have been a bit traumatic for us due to past now discredited research. But the trauma of this is still around so it has been a huge mountain to climb.

So back to the festival. I have history of being different and standing out and I am comfortable with doing that now but I do acknowledge it is less isolating to be accepted and almost finally as an autistic person from my established community. I don’t believe in segregation and yet so many seem set on this ideal for safety. I I believe it mitigates progress.

From my perspective as an outsider I did not share the power in the concept or design but as there were over 30 talkers that was accepted; the audience was over 600 plus 15,000 on social media and now most of the talks free to view. The organising of our disparate groups came together well and I found the premeetings, once I navigated in, welcoming and that I would be accepted to talk. My computer overheats as it steadily declines into hardware death, so I knew I could only do 2 takes and that was it. I haven’t had time sadly to view it all live but each and every talk was allowed to go on their youtube site and also have publicity when highlighted. I believe that this was novel as in at this enormous level , this had never been undertaken before. I felt the joy emanating from those taking part and from those watching it. I have had huge feedback personally, some heart-breaking and an increasing amount asking for advice and signposting from girls, women in particular and as older women this is an incredibly nerve wracking time, to question your identity after so many years. I am honoured to be a part of their journey.

So the IARF was brave for accepting people or subjects they had never heard of or had not been accepted as significant before. It was not full authentic co-production that I have been involved in but happily can say it was on the way and many thanks to Anna ably supported by Damian Milton and Georgia Pavlopoulou. I strongly believe in empowerment, transparency as far as possible and coproduction although it is not always possible to do full co-production I was delighted to be in this event somewhere on the ladder of co-production.

• Clenton Farquharson: “I want to be a central part of decision-making”
• Co-production Week

This Co-production Week, at SCIE we want to join with a number of others across social care who have made a pledge:

“We support the full and equal contribution at events from people who draw on or access social care and support”.

It’s just strange – and frankly unacceptable – that in 2021 people organise events, commissions, reviews etc. about people who draw on social care and support and still don’t involve them, or involve them only marginally. As Anna Severwright, from Social Care Future, says:

“Thankfully we have progressed; to a place where if a conference on gender inequality had no female speakers, it would be criticised and probably draw protests. Or an event about tackling racism, had only white experts, rightly it would lack all credibility. And yet social care conferences are full of experts and leaders, who usually have never experienced living with the very thing they are talking about. Or we have to beg to be begrudgingly added last minute as the ‘token service user’”.

• Social Care Future
• Example of a person who draws on services speaking: The Caring View, July 2021

Anna says that her experience of the last two years of Social Care Future gatherings is that the discussions are different when people who draw on care and support are significantly involved. So, it follows that the exclusion of experts-by-experience promotes the design of policy and practice less likely to represent what people want.

I used an analogy – at an event this week – of building a house. If you were designing and building a home, you would want the full and equal contribution of all of the experts in the project; from the architects to the builders and all in between, including you because you’re going to live in it! The same is true in social care: Design the solution with the people for whom the solution is for; and the outcome is likely to be far more successful.

So, this Co-production Week, we at SCIE pledge to support the full and equal contribution at events from people who draw on or access social care and support. But we also pledge to challenge those putting on events to read this blog and take the same action. It’s a great way forward so that social care and support services see people who draw on them as being central to their very existence and hence their design.

• Kathryn tweets @kathryn1smith

Inclusion in events, debates and forums on social care – our commitment

A number of organisations and groups believe people who draw on social care should be properly included & heard in events, debates and forums which discuss social care and therefore affect their lives & support. We are all working to support people’s inclusion. We therefore commit to:

• trive to continuously improve meaningful participation in events and forums we organise and run
• Encourage and support other groups and organisations to make similar efforts, in particular those we are invited to speak or contribute to
• Work with and support Social Care Future and Think Local Act Personal in the development of practical advice and examples that can assist ourselves & others to properly include people
• Provide updates on action, developments and progress in 12 months.

We further encourage other group and organisations to make similar commitments.

• Press report on asylum plans

There are a multitude of actions needed to promote anti-racism within organisations; the one I’m advocating for here is using co-production. Displaced people are often excluded from the service design process as we fear re-traumatisation and face challenges with capacity, managing expectations, cultural sensitivities and language barriers. We may question whether people truly know and understand what services they need, or we may not know where to begin. But designing services that may be based on a paternalistic and privileged view of the world will only get us so far and won’t address the power imbalance that is mirrored throughout society.

• CIPD: Developing an anti-racism strategy

We at Migrant Help have just started on our co-production journey to develop better services by piloting a Lived Experience Advisory Panel with a group of refugees. We hope to find solutions to the participation challenges mentioned above by working in equal partnership and linking in closely with the charity sector. Some key insights so far to support power sharing and equal decision-making have included:

• Having the right culture, structure and governance
• Putting participant wellbeing above all else
• Using creative techniques to support engagement
• Being as accessible as possible
• Recognising participation appropriately.

As part of National Co-production Week, we are launching a co-production page on our website with tips, links and guidance on how to co-produce services with displaced people. We would love this to be a collaborative space so please get in touch with your ideas and experiences. We haven’t got all the answers but hope you will join us in using the power of co-production to help deport racism – for good!

• Migrant Help co-production page

Co-production and Covid-19

During the COVID-19 emergency the CHC Co-Production group has continued to work closely together to ensure that all service users have remained safe during unprecedented circumstances. This includes, sharing regular updates around the pandemic and the revised guidance, details of the local availability of PPE and where to access emergency supplies. During the pandemic the Hampshire CHC and Placements team were also able to quickly offer a 10% uplift in monthly budgets to support users to access additional PPE and other extra costs. The group has also been supporting with feedback around the access of testing and vaccination for PAs, raising issues directly to the Hampshire vaccination team.

Upcoming projects

Over the next year we have a number of new and exciting projects to keep an eye out for. These include, supporting with training of CHC staff and working to improve the availability of training for Personal Assistants in Health and Care in Hampshire, improving CHC letters and working to support the implementation of the personalised care model.

We see Co-production Week as an opportunity for shared learning across partnerships, reflecting on the benefits of co-production and to celebrate the impact and contribution of expert service users and carers in transforming health and social care services.

• Co-production Week

• Barnet Parent Carer Forum
• SCIE’s Co-production Week 2021

Here are just three examples of where co-production is going on locally:

• A parent / carer is now a director on the board of the Education and Learning Service
• Our conferences are co-produced and agendas and speakers mutually agreed
• We have parent/carer representation and input on each of the local authority workstreams including social, emotional and mental health; Autism; Special Education Needs support; and preparing for adulthood.

Co-production and consultation

There are several other areas, from working with mental health services to drawing up local strategies, where co-production is taking place. One area I’d really like to talk about, though, is with surveys. A survey or a consultation can be useful to the powers-that-be, but we try to make sure parent / carers help draft the content of the local ones before they circulated. This means that the right questions are asked and it follows that there’s a higher likelihood of a better response from the people asked to complete it. The parent / carers are the ‘experts by experience’ and so it’s absolutely vital that they are involved at this early stage.

Parents and Carers of children and young people with special educational needs have a great deal of knowledge and expertise and it is hugely important that this is used to inform and improve the decisions being taken by those who develop and provide services for them. Let’s hope that our relationship with commissioners and providers continues, using co-production to guide the conversation.

Many organisations seek out disabled people to sit on their committees because it is part of their equality policy but have little or no regard for what co-production means. But let’s face it – it can look good on their policies and reports to say they included us.

I am in receipt of a Personal Budget from my Local Authority and about 15 years ago they asked me to sit on their Personalisation debate. Due to previous experiences I initially refused but the head of Personalisation hounded me and asked me to meet up with him in my local pub for coffee. He even brought his secretary with him. The meeting went something like this: “Anne – we would really appreciate your input and experiences as you have been in receipt of social care for many years. We feel we could benefit from your input and as a result you would be supporting other disabled people in their ambition to live independently!” Well who on earth could refuse an offer like that?

Just to say I lasted 12 months but when I realised that nothing had changed when they discussed the RAS – this is a way of determining how much social care you were entitled to – I made the decision to leave.

When co-production works it can feel very empowering. Because let’s face it, we all like to think we have made a difference. Working with/for SCIE I have always felt valued, as I have with Shaping Our Lives. Co-production can work but it needs the shift in thinking. Given the opportunity, ‘we’ can make a difference.

• Shaping our Lives

• SCIE: COVID-19 advice for social care
• SUST Sheffield: Trainers and consultants with lived experience of mental health problems.

The arbitrary diktats of decision makers are not necessarily malevolent and uncaring, but their consequences can be felt as if they were. The manifold achievements of movements for social change have made the world a better place for many of us, but they are yet to radically alter the status quo, which remains intact to further the cause of vested interests. We might be all in it together, but some of us are in it more deeply than others.

One of the consequences of the response from health and social care organisations to the emergence of COVID-19 has been to side-line ideas like co-production, to treat them as luxuries that can be explored at leisure once more important and pressing demands have been dealt with. This approach represents a form of paternalism that is diametrically opposed to the values that underpin co-production.

I do not doubt that including people with lived experience of a range of disabilities would have resulted in a better response to the suffering caused by the pandemic. Fewer people would have died and more people would have flourished.

The task facing co-production activists who are grounded in their commitment to fighting for the rights of disabled people is to find new ways of working together with the aim of making the idea of ‘Nothing about us without us’ a living reality.

And the duty of decision makers is to act on what we say.

• Patrick is Co-ordinator of SUST, the Sheffield based network of trainers and consultants with lived experience of mental health problems.
• Patrick tweets @pwtc_wood