Co-Production - A great opportunity for valuable expertise

By Esi Hardy, Managing Director of Celebrating Disability; and  Disability Inclusion Trainer and Consultant

Now more than ever before is a great time to utilise the knowledge, skills and expertise of disabled people.  To improve not only the lives of disabled people but workplace cultures, and the delivery and development of services and products.  

PurpleSpace recently published a report on the effects of lockdown on disabled employees.  The organisation surveyed their clients across a diverse range of sectors.   They found for many disabled employees working within the organisation surveyed, a number of positive outcomes that resulted from remote and home working.  These included:
• (For some) a greater connection between teams
• (For some) it has meant feeling more positive and productive 

As a trainer and consultant, my professional life pre-lockdown consisted of sitting for hours each week on trains and public transport heading into London and other major cities to deliver services for my clients. Don’t get me wrong; I do miss the train journey, talking to strangers at 6am.  Explaining that no, just because I am a wheelchair user does not mean I’m on a day trip.  And even if I was on a day trip, it wouldn’t be starting at 6am.  Plugging in my wireless headphones and battling through rush-hour traffic.  I would arrive and after finding the venue, deliver a half day/full day of training or consulting before heading back to North Hampshire.  

Like many of us, disabled or otherwise, this was the reality.  Depending on how far we were travelling each day, we could only make so much difference; talk to so many people; influenced so many strategies; introduce so many new perspectives. 

So what? Why is this relevant to co-production? 

Although many of us are heading back into the office, many of us are still working from home and/or shielding.  Many disabled people have realised that productivity can still take place from the comfort of their own living room and in some cases (as seen above) productivity and inclusivity has increased.  The level of participation, engagement, value and sense of self-worth has dramatically been improved.  In turn, this improves the innovation, collaboration and co-production of those disabled people. 

There is now much more time to have conversations; simply because much of the time that was previously spent on travel can be reassigned.  People have a lot more capacity to innovate, share experiences, problem-solve, design and develop because much of our energy is being saved by not having to travel to physical premises and to think about our access requirements once we have arrived. 

Whilst digital platforms are not 100% inclusive or accessible for disabled people, they are opening up many more opportunities for people to engage and interact.  As well as digital video platforms, there are many ways to digitally interact to gather the ideas of the people that know best.  User-led Facebook Groups such as The Bunker have enabled disabled people to share experiences on a peer-to-peer level.

In a time where many of the social and environmental barriers have been demolished, let’s now work together and embrace this time to innovate and design with lived experience experts. 

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Esi is a trainer, disability inclusion consultant, podcaster and writer. 

Celebrating Disability delivers an end-to-end service for businesses and not-for-profits. Providing training, consulting, auditing and public speaking to support organisations attract, engage and retain disabled people.

Esi hosts the podcast #PartofMe Podcast – a peer interview podcast.  Guests share their experiences of how they manage their disability in the workplace. Workplaces are varied; from mediator couches to the tennis court and everything in between. As well as stimulating debate and discussion, the podcast offers advice and tips for managers and disabled people alike. 

Living in the Covid-19 era and trying to make the best of self-isolation!

By John Evans, OBE, disability rights, equalities and diversity consultant and trainer and former SCIE trustee

It was a hard experience being diagnosed with a terminal, aggressive cancer almost two years ago. I didn’t know which way to turn. My wife Jana and I literally thought my time was up. After the initial shock we did manage to pull ourselves together and find a way forward which has worked until now. Long may it continue.

Life was difficult enough with this dangling over my head trying to get on with my life. However, little did I know that 21 months later we would be finding ourselves facing yet another threat. This time not just to my life but the whole of humanity! It is hard to grasp the enormity of the challenge now facing us with the pandemic.

Co-production Week 2020

As always there is only one way forward and Jana and I now need to navigate this journey to find a solution we can live with. What I do know is that I do not want this coronavirus to get myself or my wife and my PA’s. Our life must go on, so we decided to make the most of this and do what we feel is best and safest.

I decided three weeks before the official Government lockdown in March to already self-isolate along with my wife and PAs as far as this was possible. I was not prepared to take the chance and wait for the government to act.

We then decided to plan a robust approach in trying to keep us as safe as possible in our isolation. We placed notices on all our doors explaining I was a person “at risk” and visitors were not allowed entry and had to leave parcels outside. We also started a rigorous hand washing regime along with regular cleaning of surfaces, sinks, doors and cupboard handles, switches and anything else my wife and PAs would touch.

Please note I used the phrase “at risk” and not the word the government, media and others use called “vulnerable”. I hate this word and it is not in my vocabulary because it is derogatory, paternalistic and an insult to my humanity. Unfortunately, this word has now become common usage which makes it more difficult to correct.

What is interesting in the approach we took for Covid-19 is the same as the one we took facing the threat of the cancer. These are, “don’t panic”, put fear in its place and not allow it to take over, avoid stress, stay positive, remain vigilant, have a good quality of life and be aware. These will work wonders if one can manage to maintain them.

Another method I used which I learnt in my early 20s is that of meditation. In other words, deep relaxation breathing as this can help calm one down as well as providing clarity of thought. It can be very uplifting which is very helpful in a time of doom and gloom! It is also known to be helpful for one’s health, blood pressure and de-stressing oneself. A perfect remedy when in isolation to keep control of one’s thoughts from wondering into negativity.

Meditation can also bring one peace which is very helpful at the time of disharmony and confusion caused by Covid-19. We are also fighting a war against Covid-19 which is killing our fellow human beings mercilessly, so inner peace can keep things in perspective. I am not necessarily just thinking of sitting and meditating but integrating this relaxation breathing into one’s life.

My other saviour is my wife as we share life together. We compare our experience of what is going on in trying to understand what is happening. We can also make each other smile and laugh and this is important. Sometimes it can be so intense that it will bring tears to our eyes. Then we know it has been worth it. We cannot do without fun. We are thankful to have each other during such difficult and surreal times.

It is also inspiring witnessing how localism has come to the front with the emergence of many self-help groups and mutual groups forming to help find solutions for local communities without the government’s help. This is co-production happening in action.

Lastly, as it is always an integral part of my everyday life is music. This is in my blood and my household and is not the same without it. It is exhilarating and mood enhancing hearing it in the background. I love all kinds of music rock, rhythm and blues, blues, soul, jazz, world music, folk and classical. My taste is very eclectic and very much reflects my personality. I will not tell you what singers and songwriters, composers or musicians I admire but will finish this blog and allow you to think and decide what they are?

I finish in the hope of what I have written might well resonate and help you find meaning in these very strange times. The future will never be the same again but what is clear is that we must move forward and not go back to the past.

Peer research reflections

By Patrick Wood, SCIE Co-production Steering Group Member

I’ve been actively involved in co-production for a long time. Through working with SCIE, my commitment to the principles of co-production and the core elements of the process has grown wider and deeper. I was interested in learning about how these underpinning values could be embodied in a programme that was run by a large statutory sector organisation and how this work compared with the projects run by the user-controlled groups that I am more familiar with.

Involving peer researchers in the evaluation contributed to it being co-produced, like the other elements of the programme. Peer researchers bring an understanding based on personal experience that differs in emphasis from the experience of professionals and can offer insights that might not otherwise be registered.

It was a pleasure to work alongside the people I encountered in this project, including the deeply committed individuals involved in the Board, whose work bodes well for the future of co-production in the county. It was good to work alongside Laura as a fellow peer researcher; our styles complemented each other very well and we were able to offer each other mutual support as our work progressed.

Overall, I learned that despite the challenges involved in operating in a large organisation with competing interests and priorities, when the will to affect change is strong enough it is possible to develop new and more inclusive ways of working that improve the lives of citizens and create improved relationships between people who use services, carers and workers, for the benefit of all.

A Peer researcher – the Optimistic Position

By Laura Able, Peer Researcher

To take a coproductive approach to an evaluation about the Oxfordshire County Council (OCC) Coproduction Programme was clearly apt. On a personal level, I consolidated existing skills, earnt money, felt the feel good factor of working together and remain intrigued by the borders that lie between theory and practice.  The critical OCC challenge was whether the convoluted mechanisms of a large hierarchal structure can be adapted and/or radically change to facilitate coproduction.  I have definitely gained greater insight into how it works or not.  This is a non-cynical position.

As peer researchers we gave different ideas/viewpoints to the research design and grounded the process in the principles of equality, diversity, access and the sharing of power.  We maintained the focus on these key factors. Our employment indicated the priority of these values and we added complementary skills – Patrick provided a methodical overview with clarity whereas I gathered in-depth rich data.  What people said and how they said it is important. Our approach encouraged all and particularly service users/carers to be open and honest. 

Witnessing the tensions and frustrations of those involved at all levels was difficult, I was not in a position to offer advice even if I had it, regurgitating (in transcription) most of what I heard.

For me the coproduction process is about striving for the ideal of democratic citizenship and this was recognised throughout the evaluation through our mixed methodology and also the opinions of our research participants; but these were not static they oscillated depending on they were talking about.  The underpinning values, beliefs and understandings were not always developed due to factors such as restraints in time, resources and changes in staff in our research team and the OCC, because this is the real unpredictable world.  Essentially, for me, we have examples of inspirational change progressing positively in a fluctuating uncertain context.

I hope that this evaluation contributes to the growing body of evidence that validates the coproduction approach.  To be meaningful and have an impact there has to be accountable, identifiable outcomes that are attributable to this process. My bias is towards democratic principles and sticking true to the data. In the fullness of time, if the Council are brave enough to continue coproductively all their services will improve. It is not easy as so eloquently put by both the professionals and services users.  Why should it be?  

Ever wondered how to initiate co-production in your locality but for much wider impact?

By Jane Green, SCIE co-production steering group and trustee at SCIE

The context
A large national project to develop resources to help social workers, people and organisations to use the BASW Capabilities Statements for social work with autistic adults included the aim to embed the Capabilities in a social worker autism toolkit with autistic people and those with Learning Disabilities. 

We set up a focus group that was actually initiated by myself and a social worker from BASW with autistic adults in Sussex.  Now, you might say a focus group is not true co-production and of course you are right.  But this was part of the much larger national project.   To widen the scope,  I initiated  this task focus group to recognise a wider range of perspectives, knowledge and expertise.

Co-production Week 

Often the same group of people are surveyed or engaged in research, other studies, surveys or in some cases are spoken for  and I felt strongly that we needed to represent ourselves as actually autistic adults and not marginalised. 

Our task? Our focus?
Our task was to work on actually challenge ideas, review and refine the tools for the new toolkit.  This was key.   We focused on surveys already undertaken with social workers, Universities and colleges .  These helped focus on what was needed going forward. Importantly how to improve the experience of autistic adults and adults with learning disabilities. Minutes notes were taken and many post meeting communications followed. 

So how did it go?
I was concerned it wouldn’t be co-produced and we would be appendages to something already in use.  My colleagues were apprehensive about meeting up with new people they didn’t know, trusting me, trusting the social worker.  But we found it engaging, enlightening on both sides. So useful we kept talking over the allotted time, with the much needed sustenance of chocolate biscuits, fruit and coffee,  and followed up with further reflections and amendments. 

So often in autism training, products and initiatives the language is not always accepted by the autistic community and this can be a barrier.  While medically there is mandatory language , in social care we think it incredibly important to be cognisant of this barrier.

Accessibility and  communication was key and for those who felt unable to communicate at the time it was more than acceptable to feed back, which they did in depth in written form later.  It is important to note that autistic adults can initiate and run many co-production projects and challenges are surmounted in a more accessible and equitable way than in many other meetings or projects I’ve been involved in previously. Further to the initial Capabilities statement references we added physical health studies, a hypermobility toolkit  and key research that often seems to affect some autistic adults but often missed out.  

We felt there was a good relational trust between us all that is the basis of co-production and reciprocity. We would do it again and for some it was the first time they had been involved in co-production. 

The launch of the toolkit took place on 18.6.2020 links to all of the resources can be found here:

The resources are available on the BASW website:
• Capabilities Statement for adults with learning disability: Implementation resources 
• Capabilities Statement for autistic adults: Implementation resources
• Curriculum outlines of post-graduate qualification pathway:
o Social work with autistic adults
o Social work with adults with learning disability
Key words: BASW British Association of Social Workers

#autism
#reciprocity
#hypermobility
#toolkit
#physical health
#coproduction

Jane tweets @jgjanegreen

Co-production in lockdown

By Patrick Wood, SCIE Co-production, Equalities and Human Rights Steering Group Member

It’s never been more important for people to come together and do what they can to respond to the challenges presented by a worldwide catastrophe that can appear to be insurmountable, and it’s never been more difficult to do this.

One of the problems associated with an emergency response is that issues that are deemed to be peripheral fall by the wayside. Most people don’t get to decide what’s essential or important. Most people remain subject to the conclusions reached by decision makers, whose motivations might be informed by considerations that act against the interests of communities, and which result in further damage being done to groups which are already hard done by. 

Co-production Week 2020

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 Wood

• SCIE Co-production, Equalities and Human Rights Steering Group Member
• Co-ordinator of SUST, the Sheffield based network of trainers and consultants with lived experience of mental health problems. https://patrickwood7.wixsite.com/website 
• Twitter: https://twitter.com/pwtc_wood