Co-production in a changing world

By Jordan Wosik, Young Advisor at Doncaster Children’s Services Trust

In honour of Co-production week, I want to share with you how as a Young Advisor for the Trust I feel we focus on delivering our services with equal partnership.  I work in the Advocacy and Participation team so I have seen first-hand the work my colleagues do to support children and young people to have their say. Tracey, Participation & Advocacy Co-ordinator, has supported me from day one and this support led to me wanting to provide support for others in a similar situation to my own.

Equality is a big part of our relationship with the Trust. It is essential for us as young people to know we are truly valued.  A prime example of this is how Tracey always makes sure we are rewarded for our time (because let’s face it our time is as valuable as any other professionals!). 

There are so many shared benefits to working alongside the Trust. Young people are given opportunities and support to do things they may not normally get to do at their age.  I wouldn’t have seen myself ever doing things such as giving speeches in front of rooms full of people or delivering our ‘HearMe’ training about the importance of a young person’s voice, but these are things I really enjoy and get a lot from. Doing this stuff has built my confidence and self-esteem and I have made so many friends and connections with people. These skills have set me up for the future and taught me valuable lessons about working life, the culture and how get my point across in a professional way. I love working in an organisation that has the child’s needs at the centre, and to see how my input helps to make a real difference.

This is just the tip of the iceberg for all the things we do to be inclusive, it is a constant for us through all the work we do. We hope to share some more in our next update so stay tuned.

Have a fantastic Co-production week.

 

A co-production legacy

By Emma Clarke, Director of Services and Grant-Giving, Weston Park Cancer Charity, Sheffield

I have a confession to make: I am not a blogger.  This is my first and may indeed be my last, but you’ve got to try everything once in life, right?  So why do I feel compelled to put pen to paper now? Well, I guess it’s not often one faces a global pandemic only shortly after losing your most trusted friend and mentor, so it feels timely, necessary, personal.

Co-production Week 

Weston Park @WPCancerCharity on Twitter 

Maybe it’s the cathartic process of reflection and pondering I’m craving, or maybe it’s the recording for posterity the events I have been through, what I have seen and what I have learnt.  Or maybe it’s my way of re-connecting to Jeanne Carlin, a love letter if you will, to show her that all she taught me hasn’t gone to waste, that I listened, that I learnt, that she equipped me well and I am forever grateful. 

Jeanne died on the 31^st of January and left a gaping hole in my life.  Over the past few months as, like many, my professional skills and personal resilience has been tested like never before, I have lost count of the times I have wished I could picked up the phone to her, to rest for a short while in her caring wisdom, to move forward better equipped and restored.  Instead I have captured moments – little vignettes – that I know she would have appreciated and I hope they offer you, dear reader, something too.

The world is full of gifts if only you look

We closed the door of our Cancer Support Centre on a Wednesday.  I could feel anxiety in the air as the team collected up equipment and resources to take home in readiness for working there for who knows how long.  This frisson of energy slowly dissipated as one by one I watched the team drive away, knowing their fears would be taken home and remain for some time to come.  It was at the end of that day that I picked up a call to our helpline and spoke to Peter.  His question was simple – how can I get my food shop next week as I am on chemo and my clinical team have told me not to go out of the house?  

Next week will be the 14^th week I have shopped and delivered Peter’s groceries.  I could have easily delegated this to one of the team, freeing myself up for so-called strategic work that becomes the language that accompanies the title I now hold.  But I see it differently. Peter feels like a gift, our weekly chats have helped me see the world through eyes that matter; in a fast-paced environment they have helped me make decisions which feel right.  Jeanne always encouraged me to change my lens, to see the world through the eyes of others, to see human rights at a micro level.  To not get above my station. I did it without thinking. 

When things get tough, connection is your lifeline

It was over a cup of tea (hers: bag dunked for mere moments; mine: steeped until the spoon stands up) that we had the Twitter debate.  I remember telling her I couldn’t see the point, her telling me it enabled connection with her many networks across health and social care.  But it wasn’t only online where she cultivated the power of networks, it was over coffee, dinners, wine; she blended the professional and the personal to the point where the seam became invisible and the creation was all the better for it.  It’s funny how the tougher the days and weeks became during the early phase of COVID, the more time I made for my networks.  They informed me, they supported me, they linked me to others who could help, they showed me my feelings of doubt were natural.  They provided the fire cover when the bullets were raining down hard and fast.

Wear your own lived experience like you would the cape of a superhero

“So how are your family”? she would ask.  We’d talk about the ordinary ups and downs of family life, the joyous moments and the challenges we all face.  We’d exchange experiences of being family carers, the love, the frustrations, the tiredness.  It was only recently on the Leadership for Personalised Care programme that I saw what she had skillfully been doing all along, developing my courage to share my own lived experience, to talk without my voice shaking and to weave this more explicitly in to my professional thinking. 

So over recent months, as I have sat in the garden of my two shielding parents having conversations through an open window, I have married up the personal and the professional like never before.  How did my dad feel getting his shielding letter three weeks after everyone else? What does the word ‘vulnerable’ mean to them as people nowhere near 70? Not that 70 is by any means a definer! What freedoms and liberties do they miss the most? Who would they trust to provide help if me, their only child, was taken ill?  Jeanne taught me that these are the conversations that are happening in homes across the country and that listening to those closest would help make me a better decision-maker, a better leader.  Because my barometer would always be ‘is this good enough for the people I love?’

So what next? Well, as I pass the milestone of one year in the job, I am returning to first principles.  I (along with my rather amazing team) will be listening to – and sharing power with -  people with lived experience. As Co-Production week launches across the country, I am proud to announce a partnership with Co:Create and Viewpoint, two Sheffield-based social enterprises  sprung out of South Yorkshire Housing Association, which will steer us well for whatever the future holds.   

If you are living with or beyond cancer or caring for someone who is, and you would like share your views and experiences to design and decide how we use our resources and assets to make the most difference, then please get in touch emma@wpcancercharity.org.uk or @emilys_pine on Twitter.

When hugs were permitted, and boy are they missed 

Co-production at West Hampshire Clinical Commissioning Group

The WHCCG CHC Co-Production group has been working together to promote client engagement and co-production since 2018 with extremely positive results. We have also seen the set-up of the wider Working Together Group in 2019 with the aim to encourage collaborative working with those who may be unable to attend regular monthly meetings. 

What have the CHC Co-Production Group been working on this year? 

Over the past year The Co-Production group have been looking in detail at the CHC service and have identified key areas for improvement, including, access to accurate and up to date information, as well as improving the review process for those with Personal Health Budgets.  
The group have been able to produce a series of information booklets to support our clients through the CHC process and are also working to redesign the information available on our website.  

Co-Production During COVID-19

During the COVID-19 emergency the CHC Co-Production group have 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.  

Upcoming projects

Over the next year we have a number of new and exciting projects to keep an eye out for. These include, looking at liability insurance options for direct payment holders, supporting with training of CHC staff and working to improve the availability of training for Personal Assistants in Health and Care in Hampshire. 

Celebrating ‘Co-Production in a Changing World'

During the Co-Production week WHCCG will be taking part in the SCIE webinars and interactive workshop, as well as sharing blog posts and showcasing the ongoing Co-Production work at WHCCG. This is a fantastic opportunity to celebrate the group’s fantastic work and the positive impact it has on our service users.  

To get involved with Co-Production at WHCCG please contact the team at:  WHCCG.ContinuingCare@nhs.net 

Gold standard involvement or co-production in research?

By Dr Karen Newbigging, Reader in Mental Health and Social Policy, NIHR School for Social Care Research, University of Birmingham (With thanks to Niyah Campbell, Youth Participation Lead, Institute for Mental Health for posing the challenge). 

It is fitting that the publication of our report on the contribution of the voluntary sector to mental health crisis care will coincide with Co-production Week. We set out to make lived experience of a mental health crisis the golden thread running through our approach to this study. We were greatly helped in the initial phases by Suresearch, who provided input on the design, advised on payment rates, and provided training for the whole team on interviewing. 

Co-production Week >>>

The core research team consisted of five academics, five co-researchers (i.e. people with lived experience) and a carer. The co-researchers were recruited via social media and our networks, including NSUN. From an overwhelming response, we were also able to recruit to a Reference Group, to act as a ‘critical friend’ to the study. This group, chaired by a Suresearch member, Dr Jo Barber, consisted of eight service users and was represented on the Study Steering Group. Dr Jacqui Dyer, who brought a breadth of lived experience and of approaches to inequalities, chaired the Study Steering Group, which involved three additional service users. 

The extent of the involvement of people with lived experience was evident at the two workshops when everyone came together to reflect on the emerging findings. The impact of people with lived experience on the study was evident and led to changes being made in the design of the research and our approach. Perhaps, the most impactful was the nature of the experience of a mental health crisis, which is often seen in very narrow terms as an urgent event. It became clear from those that had a personal experience of a mental health crisis that this was profoundly inadequate, and that our study needed to engage with how the crisis experience  unfolded over time. To this end, the Reference Group recommended undertaking repeat interviews with some of our service user participants. This was endorsed by the Study Steering Group and we were successful in securing further funding from NIHR for this purpose. 

Involvement in our study was evaluated positively by With-You an independent service user consultancy. Nonetheless, there were areas that needed improvement, particularly arrangements for payment and support. Whether this study was co-produced or was aiming for the highest standard in involvement, I will leave others to judge. Whatever the verdict, it is clear from our experience that there are implications for bodies that commission research, for Universities and for individual academics. 

If co-production is to be meaningfully realised in research, attention has to be paid to: the systems and processes for securing funding; recognising the contribution of people with lived experience not only through adequate payment and reimbursement but also proper systems of support and attention to personal development; and how individual academics are forging reciprocal relationships and learning from those with lived experience. All of this has to be underpinned by a thoughtful and thorough consideration of equality and diversity to ensure that research is up to the mark of co-production.

Why not pick what works for people?

Why not pick what works for people? Co-production after COVID-19

By Andrew McCulloch and Laura Able

There is plenty of pessimism and plenty of hurt around right now understandably. But we also need to ask, “what will be the opportunities for co-production flowing from the Covid-19 crisis?”

One immediate priority is to move Social Care and the NHS back from an emergency footing to start addressing the huge backlog together with new physical and mental health problems. The efficient and value-driven way to do this will be to co-produce the best pathways and responses with patients and the public. Service users best know what solutions work for them, whether it is telemedicine, phone calls, distanced visits and so on. These responses need to be thought through, co-designed and implemented together involving people with lived experience, user led voluntary organisations, social enterprises, and front-line staff.

There are several positives that can support and energise co-production creating a benign spiral:

• Innovative solutions have been trialled by a range of agencies from informal community groups through to large Trusts and local authorities – why not pick what works for people!
• Communities have engaged as volunteers and new links have been forged
• Many people have tried out new tools such as digital platforms and can feedback on what works (so long as digital exclusion is addressed whether directly via free kit and internet or with alternatives)
• Many co-produced solutions are non-bureaucratic and cost effective – and this will be critical in a time of scarce resources
• BAME groups and much of the rest of Civil Society has been responding to Black Lives Matter in a way that could boost efforts to co-produce culturally sensitive and specific services
• Some clinicians and managers have responded creatively to crisis, and they could become product champions for co-production, and this could be supported with a national training programme in co-production.

Now is the time to stop the “system” re-asserting itself and make a step change towards deeper co-production in health and social care.


Laura Able is a wannabe agent of change and co-production catalyst.

Andrew McCulloch is an independent consultant in health and social care.

An attitude of gratitude

By Kevin Minier, expert by experience and member of the SCIE Co-production Network 

A Changing World
Change is inevitable, but how are we going to handle change, and more importantly are we going to recognise the need for change and use change as an opportunity to enhance life.  We have seen many, many people not only go the extra mile for others but in such uncertainty truly put their lives on the line. What is worth your life?

Co-production Week 

Citizenship

We have recognised the needs of others and the pandemic has been a leveller of our society – nothing is more important than your health – from our Prime Minister to our elderly and those living in care homes.

We have seen our migrant workers providing an ever-increasing vital role in our health and care services and in providing the basic expectations of living in the western world in the 21st century.

Gratitude

It has been wonderful to see the nation standing up and recognising the hard and dangerous work that our medical professionals have provided during this pandemic.  It was wonderful to see how this was extended to our care workers and then to our basic services of supermarket workers, council workers, transport and other key workers.

Unity in Diversity

It is time to stop fighting and start working together and this will only come with empathy for each other’s situations (bias – celebrate diversity) and point of view (viewpoint).  It is not about defending our TRUTH or getting revenge but about having agreed objectives and finding a way to move forward.

Freedom is about working together and not in the competition of envy, selfishness, greed and fear. 

Co-production the new normal

I believe that it is time for us all to embrace the principles of co-production in our decision-making from government, to business, to front-line health, care and local services, and in our daily lives.

If you are interested in releasing the potential of diversity into your life, your community, your workplace my details are available here. 

“Now is not the time to be reductive” – be more Playmobil!

By Steph de la haye – Member of the SCIE co-production steering group 

The theme for this year’s co production week is very much on trend, a changing world, and even before the COVID-19 pandemic there was an uprising of change and unrest. The irony has not been lost, in fact the start of this year as a small user led organisation based in Sheffield, Survivors of Depression In Transition, we had planned a whole programme of ‘exploring communities and co-production’ workshops with a local festival to coincide with the SCIE week!

We managed to deliver one session before the ‘lockdown’ and then sadly postponed until 2021. Yes we had given the virtual world of delivery some thought , but concluded that we would not have the connectivity , human responses or collective reciprocity that we desired and needed to demonstrate the core principles of genuine co production.

Why were we developing this in the first place? Well, while we have some local pockets of good practice, the whole system doesn’t and we, while small, wanted to help support everyone in understanding what this co production was all about and how to go out and make it happen. The basis of this mission has been in part, due to the work we carried out with Challenge Sheffield, from a small pot of funding from Sheffield Healthwatch speak up grants.

We created a space where people could feel comfortable and safe to use those tools such as toy figures, Playdoh and pipe cleaners. Giving peoples expressive and visual imaginations to flourish and so producing rich feedback and comments for the report.

The three themes were - Experience of services; Working together, co-production and involvement and Community raised similar issues.

The following recommendations were made from the Sheffield Mental Health Challenge Day:

·         Continue to develop better connections and collaborative working

·         Enhance and strengthen communication and information systems

·         Increase understanding and awareness of involvement and co-production

·         Develop and support a range of involvement and co-production initiatives

·         Support smaller and user-led organisations to increase diversity

These challenges continue and ironically, we need this even more, and we should not let genuine co production be dropped or forgotten as we focus on the national crisis and are apparently ‘led’ by elected politicians and scientists. Black lives matter & LGBTIQ+ are more vocal than ever, and we must create a parallel for co-production as it can benefit and improve all inequalities.

NO, we the people demand to be heard and seen as partners with an equal platform to create a better world which gives people , families & communities strength and influence in the places we live and work in!