From one service user to another

By Ali Wright, Deputy CEO, The Advocacy Project

As a charity that supports people with learning disabilities, mental health issues and dementia to speak up about the services they use, The Advocacy Project places service users' voices and co-production at the heart of its work.

Our most recent co-production initiative involved working with service users to tackle loneliness in London's care homes and mental health inpatient wards, through a Christmas card appeal.

One of the user-designed Christmas cards 

People in care homes and mental health inpatient units have told us how lonely Christmas can be; many of them don't receive visitors or Christmas cards. We spoke with other service users about this and, together, we came up with the idea of creating our own Christmas cards to send to individuals in care homes and inpatient wards.

As The Advocacy Project is shaped by those we work with, we felt the design of the cards needed to come from the very same people — as an act of solidarity. People with mental health issues, learning disabilities and dementia, created their own original artwork for the cards.

This project has spurred positive action among our service users, who have been able to deliver a piece of work that they know will benefit other service users, based on their own experiences.

Jill and Sandy, who have been married for 23 years and have learning disabilities, love painting and drawing. They've spent a large part of their life trying to convince people, including their art teachers, they are capable of achieving their aspirations.

They said: "Christmas is about giving and the cards will give a little joy to other people during the festive period."

One of the other seven artists, who was in a mental health ward for a prolonged period of time, describes herself as one of the "lucky ones", as her daughter would come and visit her in hospital.

Now in recovery and volunteering with The Advocacy Project, Giorgina told us that Christmas can be a really difficult time of year for those in mental health wards. She said that the most important thing is "having people around you that care" and that "it's the little things that make the biggest difference".

Jasmine, aged 16, who volunteers with The Advocacy Project during her school holidays, also produced a piece of artwork for the cards. She says: "The Christmas card appeal will show people in care homes and inpatient wards that other people are thinking and care about them."

Working together, we have also been able to increase awareness about issues of isolation among the general public and health professionals. The cards are being sold to members of the public to cover the cost of producing and sending them to people in mental health inpatient wards in three London hospitals in Westminster and Kensington & Chelsea, as well as care homes in Westminster.

Co-production in Lambeth: ‘it’s the way we do things around here’

By Lou Thomas, the Innovation Unit

To deliver different, better, lower cost public services, public professionals and citizens need to embrace co-production. At Innovation Unit, we know from our work in radical innovation that it is a practice and a mindset that is at the very heart of transformative change.

People’s needs are better met when they are involved in an equal and reciprocal relationship with professionals, working together to get things done. When citizens don’t just participate in the process of designing and delivering new services, but they own it.

We’ve been working with the Lambeth Living Well Collaborative to enable just that.

Lambeth is one of the most deprived areas in the UK with a mental healthcare system struggling to handle high levels of referrals and people stuck in secondary care. Like many other healthcare systems around the UK, it has seen its funding cut significantly in recent years.

The Collaborative was formed in response to these challenges. It is a group of service users, GPs, providers and commissioners dedicated to transforming Lambeth’s mental healthcare system. We are helping them to prove that co-production will work on a large scale and drastically improve outcomes for people with mental health problems, regardless of the severity of their condition.

Opening up the process sounds a daunting task but the simplest of adjustments can have a profound impact on culture and ways of working. A monthly open invitation to breakfast in a local social enterprise cafe, run by people with lived experience of mental health issues, was the catalyst in Lambeth. New offers like a peer support service and community options team were quickly established to support people out of secondary care and into sustainable community based support and services.

These breakfast meetings were just the start. They provided a simple opportunity to be part of the conversation about challenges, and created a shared vision that co-production is “how we do things around here”. To date, the Living Well Network approach is seeing real impact, with a significant month on month fall on referrals to secondary care.

During co-production week, Lambeth shows us that strongly co-produced services are the only way to meet people’s needs and aspirations. It addresses a variety of issues facing commissioners ranging from how to better connect with communities to identify opportunities and challenges within them, to how to better assess outcomes, and encourage providers to work collaboratively.

With patients fully embracing the principles of co-production - ‘nothing about us, without us’ - Lambeth has created long-term, sustainable impact, whilst dramatically improving healthcare experiences.

To find out more about Innovation Unit’s work transforming public services through co-production, visit our website

Is it time to consider offering people payment for co-design activities?

By Sam Hudson from Überology - and former SCIE trustee 

For years there has been the expectation that people will give their time for free to help public sector organisations to make decisions about how to improve, what services to offer and whether they are offering a high quality service.

We are now starting to have a split, with some organisations offering payment for certain activities, others deciding that they will not offer payments at all, and a raft of organisations in-between wondering what on earth to do.

The systems needed to offer payments for citizen involvement activities are starting to formalise this work and have the potential to create a more business-like approach, and this, for me, is the outcome that I am most excited about.  You need a budget to pay people, an audit trail and a very clear sense of purpose.  Paying people requires the service to seriously consider why they are doing a particular activity and what they hope to get out of it.  The quality of insight, listening to a wider range of voices and being as inclusive as possible becomes all the more important.

Imagine you are an organisation who would like to support a local voluntary sector organisation to deliver service-user-led involvement activities, or you might be hosting a co-design event and offering payment to people taking part – both will require some kind of procurement or payment system. Perhaps by having real money attached to this kind of activity ensures that it won’t be a tick-box exercise. You are not going to spend hundreds of pounds on getting insight that you then won’t use are you?

There is much debate about the power differential that exists between those “outside” and those “inside” the system and the impact of paying people on this relationship.  For instance, when you have members of the public, who use services, working alongside people who work in the system, making key decisions and co-developing services, can a payment offer start to balance out this difference?  Offering payment has implications for the relationship an organisation has with the people it involves, when there is money involved the relationship changes.  

From what I have observed so far, it does not appear, as some would have expected, that views are compromised, as far as I can tell, it’s more that there is a change in expectation on both sides.  We don’t yet know the full impact of this change in dynamic and it will be interesting to explore the implications of this over the next few years.

This is a tricky area to navigate.  There will always be people who are more comfortable volunteering their time and there is evidence that this is, if managed well, a fulfilling activity that can lead to all kinds of benefits for the person involved, as well as the organisation they volunteer for.  Offering payments and other kinds of support such as reimbursement for travel, or carers, as well as other development opportunities can be a real incentive and there is evidence that it widens out the kinds of people that might want to get involved both in terms of background, lifestyle and age.  

There is a great deal of evidence that overcoming financial barriers can make a real difference when trying to be more inclusive.

More than anything, I hope that the introduction of the option of payment will ensure that we end up with well-planned and focused co-design activities that are properly evaluated and the differences that participants’ insights and ideas have made documented and shared.

For a full version of this original blog including Top Tips visit www.uberology.co.uk

Welcome to the Dementia Underground Resistance Charm Offensive!

By Larry Gardiner - Secretary, Meadow Brook Residents Association, Oxford. 

A while ago I was asked to speak at a conference on dementia. I have a condition called Mild Cognitive Impairment. The request came with very little advance notice. It was my first public speaking event, and as events unfolded, nearly my last.  As I stood to make the opening remarks to this very large audience of the great and the good there was a long silence; my mind had gone, completely blank. Whatever thoughts were passing between my ears, they resolutely refused to fall out of my mouth. 

Gradually a nervous giggle started to bubble up in the room. The giggling increased and soon broke out into a wonderfully hilarious rolling laughter... And then it came; I simply said the first thing that entered my mind. "Welcome!" I paused. But by this time the laughter was beginning to subside and I could clearly see they were on my side, probably a bit grateful for the opportunity to laugh; "Welcome!" I repeated and I looked out of the window. "Welcome to the Dementia Underground Resistance Charm Offensive!" I said. Heaven alone knows why. They roared approval, some applause broke out, a few rose to their feet, the rest soon followed. I grinned sheepishly at them like a loon. Blind panic gripped me; how on earth would I ever be able to follow that? 

As an object lesson in what can happen when 'word finding' starts to become difficult, this was not a bad start. Feeling that, with such encouragement, some further risk taking might be in order; I mistakenly thought I could do no wrong and I promptly launched into a completely impromptu and rather rambling stream of consciousness. Anecdote after pointless anecdote presented themselves to my poor little addled brain with barely any semblance of order to them. I completely failed to see the 'wind up signal' from the conference time keeper.   

"Aha!" I said with needless dramatic emphasis. "The time has come..." At which point I tailored off for an equally dramatic pause while my mind searched again for something good to close with. "... ... for each of you to sign up as the founding members of the Dementia Underground Resistance Charm Offensive!" They leapt to their feet for another prolonged and enthusiastic spontaneous standing ovation and, at a stroke, my baptism by fire as a public speaker was finally over. 

Of course I had wanted to say a great deal about very serious subjects. I wanted to explain my 'word finding difficulties' and my 'face blindness' and my Mild Cognitive Impairment. I wanted to protest the complete lack of a life journey pathway for people diagnosed with dementia; I wanted to advocate for post diagnostic support for people living with dementia. I wanted to ask why the world's fifth largest economy could not look after the most vulnerable of it's older citizens. 

People started slapping my back as I stumbled off the platform and out to the foyer. Then they started to shake my hand. Some even hugged me! Over coffee a sort of queue formed as one-by-one people came over to chat. Some had anecdotes of their own, loved ones with dementia they were caring for, others asked for advice about their own disordered memory and chaotic brain function. At lunch I didn't get a chance to pass a morsel between my lips. Pledges, promises, offers, suggestions, and solidarity like tsunami waves of fellow feeling washed over me. 

Human beings are wonderfully made. We are not simply another herd animal on the evolutionary curve. We are hard wired to want to connect. We are capable of symphonies. We are capable of poetry. We are capable of balletic leaps into the unknown. We are full of optimism. We are full of compassion. We are full of altruism. We are full of incredible resourcefulness. We are mercifully merciful. We are capable of great kindnesses!

Co-production is about filling in a blank sheet of paper together

By Fleischmann, Head of Co-production, SCIE 

Co-production is about filling in a blank sheet of paper together, was one of my tweets on the first day of national co-production week during a twitter event to launch week. It sums up co-production quite well but it also covers what co-production week is all about. It’s not what one organisation or individual can do but what we can do together. It does feel like that’s what we are doing filling up a blank, calendar with events, tweets, good practice examples and launches. 

SCIE has done a few things in the run up to co-production week including running a training course last week, setting up this blog spot and updating our free web materials to make them easier to find and navigate. We are looking forward to our festival of co-production later this week. But what is making the week really great is what other organisations are doing.  It fab that organisations like the Care Quality Commission (CQC), Voice ability, Macmillan Cancer Support, the Innovation unit,  Look Ahead  and Turning Point have publicly supported the week. Andrea Sutcliffe, Chief Inspector for social care said ‘I have long been convinced of the value of working in co-production with people who use services, carers and their representative groups as well as providers, staff and other partners.’ For more about CQC and co-production see bit.ly/29d0cVv . 

In Hampshire the new User Led Organisations Network launched in Winchester on 4th July. This is important because the role of user-led organisations in owning co-production is vital if co-production is not to become diluted and watered down.  It is critical that smaller organisations, disabled people’s groups and other user groups engage with co-production. It is these organisations that will keep co-production rooted in communities and continuing to struggle with the real issues.  On 6 and 7 July a Leadership for Empowering Healthy Communities cohort in Loughborough are holding two co-production labs to develop co-production. 

On Friday 8 July the week will close with an event about New Belongings project, a wonderful initiative that employs Care leavers to help local authorities all over the country develop more co-production in their services for care leavers. 

It seems a long way off but next year Co-production Week will be Monday 3 July to Friday 7 July. It is never too early to start thinking about what you can do during the week! 

Could co-production become diluted?

By Laura Able, Co-production Steering Group and Network member

My gut reaction was that I didn't like the word co-production when I first heard it. The term sounds mechanistic.  I found I was not alone in my reservations amongst many grassroots service users.  I do believe in and aspire to be part of co-productive approaches and feel I have been part of this collective concept for many years.  It is grassroots and hasn’t just been parachuted in from America or anywhere else. We were already and are co-producing.  

Co-production builds on user/carer involvement and participation in all its diverse shapes and sizes.  People have warmed to co-production because it offered new and fresh beginnings it rekindles the real values that underpin real power sharing. The down side is the more popular it becomes the more diluted. Co-production is about citizenship as Pamela Fisher tells us and she is wondering if coproduction is a social movement.  Is it like the disability or mental health movements?  Let’s hope so. 

Co-production in Scotland

By Ashleigh de Verteuil; People Powered Health and Wellbeing. 

This blog first appeared on this website 

Co-production is increasingly being recognised as an essential approach to Health and Social Care. Scotland’s drive towards person centred care has seen various policy drivers reference co-production as a priority in shaping the future of Health and Social Care services.

In the Chief Medical Officer’s annual report, ‘Realistic Medicines’, Dr Catherine Calderwood outlined the importance of co-production going forward in Scotland’s Health and Social Care agenda:

‘The future model of care is one with an empowered patient in a shared decision-making partnership with the clinician. There needs to be co-creation of care packages that include prevention and rapid access to services when required.’

Studies have shown that Doctors often recommend treatments and interventions that they would reject themselves. This shows a lack of shared decision-making, basing treatment on assumptions and unclarified expectations.

For example, a study found doctors believe that 71% of patients they’re treating with breast cancer would see keeping their breast as a top priority. In reality, this was only 7% of breast cancer patients’ top priority.

In the landscape of integration, for us this means empowering Health and Social Care Partnerships to be able to co-produce in order to support better outcomes for health, wellbeing, and integration. We want people to be able to influence their own health and wellbeing, and contribute to the design, delivery, and improvement of support services. When people are given the opportunity to co-produce their care, they are more likely to follow treatment plans, are less likely to suffer from unnecessary medical interventions, and be more satisfied with their outcomes. Nesta has recognised the potential of the Third Sector in helping integrate co-production initiatives, naming PPHW as a programme that can help achieve policy targets.

The importance of co-production, person centred care and asset based approaches can also be found throughout the recent National Clinical Strategy for Scotland, which identifies ‘a need to increase co-production with patients and carers’ as a current challenge. Self management education, Peer Support, Health Coaching, Group based activities, Asset Based approaches are also features outlined by Nesta, in partnership with the Health Foundation.

The argument for change is clear, but how do Health and Social Care professionals put this into practice? We hope to be able to facilitate that change, using the voice of lived experience so that going forward, PPHW will ensure that Scotland is, and continues to be, at the forefront of co-production.

Click to read the Realistic Medicines Report and the National Clinical Strategy as well as Nesta’s reports.