All posts by Helen Sanderson

Thats all folks..(for now)

Back in September last year when we, Helen and Lorraine, started these blog posts we wrote:

“The Coalition for Collaborative Care is a major new alliance aiming to transform the way care is delivered to or accessed by people with long term conditions so that they and professionals can work together to improve outcomes, and to achieve this they promote co-production. This blog aims to contribute to that process, to widen the debate and to reach out to people and groups who may not yet be involved. We’ll be very pleased if you share this blog, contribute your ideas, and join in the debate.”

 We met recently, albeit a couple of months later than originally planned, to talk about how things were going. We both felt the project had been successful and had filled a gap: we had mostly managed a blog a week between ourselves and our wonderful guest bloggers, whilst the range of contributions has been both wide and (we hope) constructively critical. Our contributors have been from within and outside of the care sector and have included those who give, receive, manage, organise and advocate for care and/or services.

It has been significant that, regardless of the sector / area of work the various blogs originate from, the key messages are the same. Themes that have emerged have included power imbalances, a need for structural change, how to properly value all those involved, whether or not there can (or ought to) (or even could) be a simple, universal definition of coproduction. We shared many examples of the benefits that coproduction has brought to the lives of individuals, and to organisations, along with words of wisdom as to what helps coproduction to succeed, whilst guest bloggers also offered critiques illustrating how coproduction could be improved.

Overall Helen and I feel that, although we see this series of blogs as a valuable resource, we have now probably taken it as far as we can as regular bloggers here.  We continue to believe that the blog has a great value and our fond hope is that someone / some organisation will take it on and operate it with the openness, transparency, and range of contributors that we have done our best to establish. We are likely to still post occasional blogs, but not with the weekly frequency of before.

 Our thanks and appreciation go to our guest bloggers, who have all done us proud. And of course we thank and appreciate each other, for a collaborative, supportive, and fun way of working: we’ll need to find alternative reasons to meet for lunch and coffee!



If you or your organisation are interested in hosting this blog for the future then please contact either Helen or Lorraine – we’re both on Facebook and Twitter.

Co-production and teamwork

IMG_3790Family leader, Debs Apsland, explores how true co-production requires great teamwork.

One of the main aims of the original Green Paper (for what is now the Children and Families Act), was for families and practitioners to work together for the benefit of our children and young people.

So why is this not happening more?

For many years there has been a “them and us” type relationship between families and practitioners. Although, as parents, we know there are some amazing practitioners out there; sadly there are all too many who are used to working in a certain way and the thought of working in a true partnership with families scares them senseless. It feels like a power struggle rather than a team. There is also the imbalance of power in a room, often families may be the only person in the room without a budget or a salary.

So how do we make it work?

In order for a team to work, there has to be trust.

A team is not a group of people who work together. A team is a group of people who trust each other. – Simon Sinek

Trust is not something that people develop overnight. You have to work hard to gain trust. Families are let down by the system, not the people working in it and we become drained by it all. Our trust levels for practitioners can be exceptionally limited and the team collapses, often before it even begins.

So why does the team fail when trust is not involved?

Without trust people don’t always believe the people in the team genuinely want to help. They feel the need to protect themselves and to tread carefully around the others. After years of feeling as if they are not being listened to, families sometimes avoid the debates and conflicts and therefore their views are not heard.

If a parent or family haven’t felt involved or participated in any of the decisions, then they feel no ownership. This leads to a lack of engagement from the family.

So how do practitioners gain trust from families?

Show up. Be there when you say you will. If you can’t make it or you are going to be late, let us know. Our time is valuable too.
Be present. There is nothing worse than sitting with a practitioner when you know they are not really focussed on what you are trying to say. Remember, we may be your 4th or 5th appointment that day but we may have waited months, even years, to see you.
Don’t have a meeting without everyone walking away with some action points. It is so frustrating for everyone concerned if we sit in a meeting and at the end walk away and think “well that was a waste of time”. If you all leave with some action points, it always feels as if the meeting was much more worthwhile.
Do what you say you will do. If you promise to make a referral, make a call, find out a piece of information, etc., then as Nike says Just Do It.
Be honest. If something you thought you could do for us turns out to be something you can’t do, then tell us. In the same vein, don’t tell us something if you are not sure. We don’t expect you to be a walking encyclopaedia but we do expect you to be honest. Tell us if you don’t know, don’t try to blag your way through.
Don’t make us chase you constantly. Just think how much more time you would have if you didn’t have to take calls from families chasing up something you promised to do for them.
Treat us all as individuals.

How do families gain trust from practitioners?

Over to the practitioners. As a parent, I know there are times when I don’t practise what I preach. So tell us, what makes you want to work with a family?

Co-production in home care

6In thinking about co-production there are easy questions and hard questions, easy decisions and hard decisions. The easy questions are where it is easy to involve people and answer the question, but often these are not the important questions that really make a difference in peoples lives. One of the harder questions, is ‘How can people getting support from home care services choose their own staff?”

Co-production – making decisions together about what matters – has to include the questions that really matter in someones life. The most important decision in homecare is who supports the person. How can we make sure that the person themselves in central to that decision, and it is co-produced? 

Involving people in recruitment

I (Helen) have been part of different recruitment processes that have involved people with learning disabilities, in different ways.

Interview panel. I have been part of an interview panel where someone who uses services had received training on recruitment, and was involved in all interviews. There were four of us recruiting for a voluntary sector post. The Human Resources team developed the interview questions, and we had two questions each. We all made notes on how the candidate answered, and discussed the answers at the end to make our decision. The decision was made by consensus and the person with the learning disability had the same role and decision-making contribution as everyone else.

Interview session. I was also part of an assessment centre to recruit to a new post for Dimensions. The candidates each had an individual session with someone who uses the service (with their supporter). The person who uses services had five of six questions that they asked, and then they gave feedback to the main interview panel. This information was given the same weight in the decision making process as the psychologist who did psychometric testing, and had a significant impact on who was recruited.

The power of both of these processes is that we learned first hand how candidates responded to people who use services. People who use services in recruiting staff demonstrate the values of the organisation and their commitment to co-production.

What could this mean for home care?

Both of these approaches could also work in home care and some organisations are already using these. In an earlier blog I looked at how people or families could be involved in how people can demonstrate how they would support someone, for example, to put on a cardigan. This could be revealing, and much more powerful if this was with someone who receives support from homecare who could share their views with the panel about what that experience was like. Where they patronising? respectful,? awkward,? comfortable? chatty? anxious? What was the experience like?

Involving people in choosing their own staff.

Home care organisations recruit staff to support many people. This is not the same as choosing your own staff. If this was my mum, I would favour an organisation that involved people in recruitment, and what would be even more important to me would be whether she had any say in who turns up at her door every day? How could she be involved in choosing her staff?

I have been working with several home care organisations who want to explore this and we have been looking at two approaches. The first is how we involve people in ‘matching’ and the second is going further and the person choosing.


Home care organisers make the decision about who will support someone who uses their service. Mostly this is on the basis of who is available. If several people are available, how do they make their final decision? One possibility is to use a process for matching staff to someone.

The relationship between the person receiving support and the person who supports them is the critical factor in the person’s experience of the service. The quality of this match is one the most powerful determinant of quality of life for people dependent on services and could be a significant contributor in staff retention.

Matching starts with the practicalities of who is available, but assuming there is more than one person, what could the homecare manager look at next? Lets imagine there are four possible staff members for someone.

Once you have a match for availability, the next match is for personality. Who is most likely to get on with the person? Using one-page profiles is an important way to do this. Where all the staff have one-page profiles, you have a description of the person’s characteristics. In the appreciation section you can learn whether they are lively, chatty full of fun, or a great listener, and calm. This really matters. If I needed support to get up in the morning, and was supported by someone who is chatty and lively, that would set me up for a seriously bad day! This means we also need to ask the person what kind of staff  they ideally would like. As soon as I say that to homecare managers they say versions of:

“That is setting us up to fail, we could not guarantee that.”

“It is unrealistic to expect that we can deliver that.”

I think it is a matter of clearly communicating that we go as far as we can to get the best match, and knowing what kind of person they get on with best, helps with that decision-making. That is a promise to try, to be thoughtful, to know what matters and to be working towards that.

If we imagine then that matching for personality takes one person off the potential staff list, the next match is for shared interests.

Personality trumps interests, and if we can find someone who the person is likely to get on with, it would be even better if they have something in common.

Again, this is where using one-page profiles for both the person who wants the service and staff is vital. Several home care organisations are gathering information about what matters to the person in the initial meeting/assessment and using this to develop a draft one-page profile. This will give you three or four hobbies or interests. Hilda was 94 and lived by herself near Blackpool. She was a great film buff and her all time favourite with Cary Grant. She loved old movies and movie stars, and her favourite music was by Vera Lynn, Susan Boyle, and Aled Jones. Getting a good match for Hilda meant seeing if the home care organiser could find someone who loved movies.

Ofcourse if you only have three potential staff to choose from, to find someone who loves old movies may not be possible, but you could find someone who loves films. That is a close as we could get to a ‘good match’ – starting with availability and then looking at personality characteristics, and shared interests.

Great homecare managers tell me that this is what they do intuitively. That is wonderful. Even better  to have a process that you can explain and record to demonstrate how you do this. Then you can evidence it and know that you colleagues are consistently working the same way. Don’t leave something so important to chance, have a process and check how people are using it.


Matching helps to identify the staff who could be a good fit with the person. Can we go further an enable the person themselves to make the final decision and choose their own staff? Two homecare organisations have been exploring this with me. Using the example earlier, could the manager share the one-page profiles of the three remaining possible staff members for the person to make the final choice? Could the manager take an iPad with her and show a one-minute video clip introduction of each staff member, again, so the person can see them and decide? If you know an organisation who is doing this now, please let me know.

There are ways that people who use home care services can be involved in recruiting staff to the organisation. This is important. How close we get to finding the best match or even better, the person choosing their final staff team, could be the most significant way to both give the person the best experience and support. Can we see co-production happening here too?









New Picture (28)Pete Fleischmann, Head of Co-production at the Social Care Institute for Excellence (SCIE) shares how co-production is happening at SCIE.

In the meeting rooms of think tanks, in the oak panelled corridors of power, in town halls and community meeting rooms from Lambeth to Doncaster – everyone is talking about co-production. What is co-production? Will it cost money or save money? Does it mean less power for people who use services or more? Is co-production merely a distraction from the seemingly endless cuts in services and welfare benefits that are making people’s lives so difficult? Or does co-production offer something new and different?

When Helen asked me to contribute a blog, it got me thinking about co-production. I wanted to talk about what SCIE is doing on co-production. But I also wanted to give a personal view of what co-production means to me.

My interest in co-production was shaped by my experience of mental health issues and psychiatric services. In my late teens and early twenties, I experienced a series of mental breakdowns. In the early eighties, there was no advocacy, no personalisation, no talking treatments and certainly no co-production – so I was treated with drugs and electric convulsive therapy. I had very little say in how I was treated. Though in some ways things have improved, sadly the mental health system still has a long way to go. In the nineties, I was lucky enough to get involved in the mental health user/survivor movement. I owe an enormous amount to the extraordinary bunch of people that came together to share their experiences of the psychiatric system and to challenge conventional approaches to mental health. I forged friendships, met my wife and developed personally; and I was lucky enough to work for several user-controlled organisations and projects.

In the early days, many of us in the user/survivor movement thought that user-only services or self-help was the ideal way to support people. We looked forward to an ideal future when all mental health provision would be delivered by people who had experience of mental health issues. But almost all our work involved professionals and people who use services working together. At the time, we called this user involvement or participation; these days, we might call this sort of thing co-production. The big difference between co-production and these earlier forms of engagement is that co-production indicates a much greater degree of equality between people who use services and professionals. It also involves acknowledging that professionals usually have more power and resources than people who use services. Co-production is about trying to equalise the difference in power between users and professionals. Now, I believe that all provision should be delivered in co-production.

Over the last few decades, the disability and mental health user/survivor movements and other groups, such as care-experienced young people and people with learning difficulties, have built up an enormous amount of expertise around how to work together in user-only spaces and also how to work with professionals. I believe it is really important that the development of co-production puts at its centre the lived experiences of people who use services and carers. That is why I have titled this blog ‘Co-producing Co-production’. It is vital that we apply the principles of co-production to the development of co-production. This might sound like it is not even worth mentioning – but as with all ideas, as co-production becomes more mainstream, it is in danger of becoming diluted. We cannot assume that co-production will not become tokenistic and watered down. One protection against this happening is to make sure that disabled people, older people, people with learning difficulties and care leavers are driving the development of co-production in genuinely equal and meaningful partnerships with professionals.

The Social Care Institute of Excellence (SCIE) has a turnover of over £5 million, was established by the government as an independent charity in 2002 and is a respected provider of good practice information and improvement services. So how does co-production fit into the work of an organisation like SCIE? At SCIE, we have always had a strong tradition of making sure that people are at the heart of everything we do. This was symbolised by the appointment of SCIE’s first chair, the well-known disability activist Baroness Jane Campbell. Back then, SCIE had a participation team and used the word ‘participation’ to describe how we involved people in our work. Now, SCIE uses co-production to describe how we aim to work in equal partnership with people who use services and carers.

SCIE covers all of social care, so we need to involve a wider range of people, including disabled people, mental health users/survivors, people with learning difficulties, older people and care-experienced young people. We have a co-production network which includes representatives of all these groups; it is chaired by Tina Coldham, a member of the SCIE’s Board and mental health user/survivor.

Over the past year, 50 people have been involved in over 25 different projects. People are involved on interview panels for staff and board members, on advisory groups and on NICE guideline committees, as well as supporting projects as writers, consultants, video contributors, conference speakers, media spokespeople, bloggers and trainers. Members of our network have recently trained all staff in both co-production and equality, diversity and human rights. On a more practical level, we have a well-established system of paying people fees and expenses, and making sure that this does not affect welfare benefit payments.

You might say we are living the dream – but of course, we’re not. There is always more to do. In co-production, it’s not yet possible to sit back and say we’ve cracked it. At the moment, we are working out a system so that staff members who have experience as service users or carers can also make a contribution to our co-production work in a safe way. We are also looking at how we can make our co-production work less reactive – trying to get people involved at the very earliest point possible in projects, supporting them to influence the strategic direction of SCIE and working with user and carer groups to promote ideas and projects that they generate themselves. We are also starting to look more closely at how we can evaluate co-production in SCIE.

We are slowly changing the culture of SCIE and moving to a situation where co-production is not a bolt-on extra, but is intrinsic to the way we work. So when we look at a new project, we automatically consider co-production in the same way as we think about the budget, a communications plan and how we will manage the project.

SCIE has recently appointed three disabled people to join our Board. Our new Trustees are John Evans and Ossie Stuart, who are leading disability activists, as well as Rachel Wallach, who is the Vice Chair of Scope and an experienced public manager. They join Tina Coldham on the Board, so that four out of our fifteen Trustees have lived experience of disability and using services. This is the highest ratio of Board members with lived experience in SCIE’s history and something to be celebrated.

I hope that one day in health and social care, we will look back to the time when users and carers weren’t involved in developing and delivering services as a sort of Dark Age which now seems strange and irrational. Then co-production won’t be something special; it will just be the way things are done, and it will be hard to imagine doing things differently.


SCIE’s NHS accredited Guide to co-production includes 16 new and updated practice examples:

The Elephant in the Room

Here Lorraine Gradwell looks at coproduction in relation to a very current setting, and considers how it may or may not have been demonstrated.

In the first of these blogs I offered three definitions of coproduction: for this particular blog it’s worth reproducing here the NHS definition –

“Co-production is one of four elements which define successful change. The additional elements are defined as subsidiarity, leadership and system alignment. It is clear that engagement of people who use services, carers, families and citizens needs to be a core element of all four change principles for genuine and sustainable change to be achieved . . . . . The new challenge for people involved in co-production is to build on the clear mandate provided by the government to create a whole systems change in the way that support is designed, planned, commissioned and delivered so that a greater proportion of decision-making processes are led by people who use services, carers and communities.” (my emphasis)

What has become apparent since we started this blog is that coproduction certainly means different things to different people: maybe this is one of the main challenges to those of us trying to promote and embed coproduction?

Our major aim in hosting this blog was to identify good practice, what does good coproduction look like? However, we can also learn lessons by looking at areas where coproduction may not have worked well, may not have been good, or may not even be present. To have a situation which starkly presents the two opposite ends of this spectrum is unusual, and it would be remiss of us to not highlight this.

The #JusticeforLB campaign came about following the death of Connor Sparrowhawk, a young man known as LB, or ‘Laughing Boy’ who had autism and epilepsy, in an assessment and treatment unit (ATU). This blog is not about the campaign per se, nor about the ATU events leading up to the campaign, although they all certainly merit examination; rather it is about coproduction – a stated national NHS practice – has it been used, and was it helpful, or not? It is about if, and how, people have worked together to achieve a mutually appropriate and satisfactory outcome.

It certainly appears that LB’s family have struggled, right back from the time he was admitted to the ATU, to be involved in decisions about his ‘care’. Communication was difficult, and appears to have broken down after LB died. His family challenged the ‘death by natural causes’ briefing that was issued by the Southern Health Trust the day after LB’s death, and communication between the parties subsequently went further downhill, straight into the arms of m’learned friends. There have been three independent inquiries, several Care Quality Commission (CQC) reports, and a full jury inquest. LB’s death has been deemed ‘preventable’. We are duty-bound to ask if coproduction has been a factor in the way matters have been handled throughout: and if not, then why not?

Coming in for criticism, for example, was the Trust’s internal governance and assurance processes. Also, the Mazars report – one of the independent inquiries – describes “…a lack of leadership, focus and sufficient time spent in the trust on carefully reporting and investigating unexpected deaths of mental health and learning disability service users”. Further critical comment was made about the trust’s ‘lack of transparency’ and the lack of involvement of families in investigations into the deaths of service users. Since the publication of these reports there has been criticism of a lack of appropriate response and action – surely a potential area for demonstratively cooperative coproduction.

By comparison the #JusticeforLB campaign appears to embody most coproduction features. Think Local Act Personal (TLAP) says:

“The term co-production refers to a way of working, whereby everybody works together on an equal basis to create a service or come to a decision which works for them all. It is built on the principle that those who use a service are best placed to help design it.”

What has been characteristic about the campaign is the way in which people have joined in and worked together with little formal organisation, as if the intent was enough to guarantee cooperation – and indeed it was. The campaign appears to welcome all voices and perspectives and has been conducted largely via social media with an, at times, uncomfortably high level of transparency. (Go on twitter, use the hashtag #JusticeforLB, and look for yourself).

Without any designated structure or ‘party line’ there has developed a kind of consensual and fluid leadership, an aim (or aims, perhaps) that was collectively supported by those who variously offered their time, skills, knowledge, resources – and indeed kindness and comfort to LB’s family where they could.

Of course, a group of like-minded people will find it easier to work collaboratively, whilst to change practice and culture in large organisations will always be a challenge. But that’s the point really: coproduction is a challenge for the NHS, but also a massive opportunity if only people will take it.

To repeat, this blog has not been about the rights and wrongs per se around the preventable death in care of a young man. It is about a classic ‘elephant in the room’. We need to talk with our partners – including NHS England – about coproduction, looking critically and analytically at the events described here. We need to identify, together, the lessons learned (or not) and decide how and where practices and cultures need to change. And then big decisions, big actions, big leadership, big consensus are needed. Tinkering round the edges won’t cut it.

The importance of hope – co-production and mental health

I met Anna and her colleagues at this year’s Dementia Congress. There was little talk about co-production there generally, but Anna had an intriguing poster presentation about co-production so I asked her and her colleagues to capture it in a blog.

In 2011 I began to wonder what we could do to support greater co-production and person-centred care in my work in mental health services at 2gether NHS Foundation Trust. I read an inspiring article by Miles Rinaldi, Head of Recovery and Social Inclusion at South West London & St George’s NHS Trust who had set up a ‘Recovery College’ in a building on their main site. The college was co-produced by people with lived experience of mental illness and mental health professionals to provide educational courses about recovery in mental health.

‘Recovery’ is a somewhat confusing concept for many to understand, as some people make a full ‘recovery’ from their mental illness, whilst for others it is more like living with a long term or chronic illness, or being a ‘survivor’ of an illness like cancer. Because of this ‘Recovery’ is a very personal word, meaning different things to everyone. In mental health, ‘recovery’ means the process through which people find ways of living meaningful lives with or without ongoing symptoms of their conditions.

It is a personal journey of discovery that involves making sense of and finding meaning in what has happened, becoming an expert in your own self-care, building a new sense of self and purpose and discovering your own resourcefulness. Users of mental health services have identified three key principles:

“the continuing presence of hope that it is possible to pursue one’s personal goals and ambitions the need to maintain a sense of control over one’s life and one’s symptoms and the importance of having the opportunity to build a life beyond illness”

After talking to many people and with their generous support, a group formed to support the development of a Recovery College in Gloucestershire and Herefordshire. At the time there were only two Recovery Colleges in the UK; the one in London developed by Miles Rinaldi and another in Nottingham led by Julie Repper, both inspirational ImROC (Improving Recovery through Organisational Change) leads. Both of these colleges were based in a physical building in an urban setting. They offered structured courses co-designed and taught by people that had personal experience of ‘recovery’ called ‘peer trainers’. The courses aimed to improve people’s self-knowledge and understanding of mental illness and peer trainers often share their own ‘recovery’ stories and learning, to demonstrate to others that change is possible.

Our team wanted to do something similar, but knew that we simply could not pick up this urban model and transfer into Gloucestershire and Herefordshire, where rurality and infrequent public transport can make access difficult.

We were lucky enough to secure funding from the Health Foundation to test this idea and the co-design of the college started in earnest in Spring 2012. The initial group consisted of people with lived experience of mental illness, carers, a range of brilliant charities (Herefordshire Mind, Family Lives and Artshape), Adult Education colleagues and staff and volunteers from 2gether NHS Foundation Trust. The group decided we needed to design a ‘pop-up’ college, so that we could take the college out to people. We wanted to deliver the Recovery College in educational settings to emphasise that this was not a traditional healthcare intervention, but was educational in nature. The group worked to develop an evidence based curriculum, a suite of supporting materials, an evaluation framework and an operational plan. We also wanted to offer three sessions of individual coaching to each student after the course had finished, as we recognised that people might want support to put some of their learning into practice. To do this we had to recruit and train both Peer Trainers and Recovery Coaches.

We used quality improvement science to design and test the college, running three courses over three months for fifty students. This first cohort of students helped us to learn so much, and over 80% wanted to stay involved and help us co produce the next round. Some are now peer trainers and others have helped to co-produce a range of new courses.

The amazing thing about the Recovery College is that the teaching is done by people with lived experience of mental illness, who not only have exceptional understanding of what mental illness is and the evidence base for it’s treatment, but also have expertise in self management techniques, such as mindfulness and crisis management. This unique blend of academic and practical knowledge is combined with the ability to inspire others through their own powerful stories of ‘recovering’. The course offers students the opportunity to learn more about their condition and treatments, develop fresh insights, learn new life skills and gain a sense of hope that recovery is possible. Students learn how to proactively manage their own care. The Recovery College is a place where people learn from each other each week and students often offer each other friendship, support, validation and recognition of each other’s strengths and attributes. Co-production happens every week as the course rolls out with students and peer trainers taking the lead and making continuous improvements.

The results of the Recovery College were beyond our wildest dreams. 94% of the first cohort of students felt more hopeful, 91% felt more self knowledgable and had greater self awareness. 82% of students felt they had gained a better understanding of others. The individual stories of change have been phenomenal. Many students are back in full time occupation or employment, others have considerably reduced their need for NHS mental health services, individual goals and dreams have been met and peoples lives have been changed.

Recovery Colleges are coproduction at its best. They can be life changing, joyous and deeply moving experiences, where hope, sometimes long buried, starts to beat its fragile wings and emerge. Jo puts it better than I ever could:

Recovery, by Jo Smith

I’m faced with a choice now,

‘To do’ or ‘to die’

I find I am willing

At least just to try

To take my first steps,

On the journey I face,

Just little baby ones,

For this is no race.

It’s an uphill struggle,

I’m scared I won’t make.

But I push on forwards,

Leave my doubts in my wake.

I’m strong beneath my fear,

I’m beginning to see,

So it really might be possible,

To achieve recovery.

And without even knowing,

I’ve already begun,

To rise from this wreckage,

Like a phoenix from the sun.

Anna Burhouse, Madeleine Rowland, Heather Marie Niman, Daisy Abraham, Elizabeth Collins, Helen Matthews, Joanna Denney, Howard Ryland

To learn more about the project watch the film at or read the co-produced article ‘Coaching for recovery: a quality improvement project in mental healthcare’ or visit the Severn Wye recovery College website for details of courses and events





Co-production – a breath of fresh air

Introduction: Andrew Walker sustained a spinal cord injury during a diving accident nine years ago in India leaving him paralysed from the neck downwards from the age of 28. From the very onset of his injury he was always motivated to continue his life, to chase the same dreams; running a business, adrenaline activities, having a family, travelling around the world as he had done previously. He talks here of his experiences chasing these goals.

I always knew that I would have to source support in order to achieve the goals and ambitions I had in life, following my accident. I actually thought it would be easy to access these, and I was startled to find some of the barriers I faced, the attitudes of some of the professionals, simply how difficult the whole thing seemed to be, just to get people to understand me, Andrew Walker the person- not the injury! Whilst now successfully running a personal budget I initially found that, as an example, accessing continuing healthcare and certainly negotiating a personal health budget with my local area, which at the time was a pilot site, actually far more difficult than I had ever anticipated.

I felt like I was battling the system, like there was a sense of ‘Us & Them’ rather than us working together, looking at the outcomes I wanted to achieve, sharing thoughts and ideas as to how we could achieve them together, in true partnership as I have experienced successfully in all of my other working activities to that date. I simply got the sense at times that some of these services ‘simply didn’t get it’. Everything appeared to be analysed from a medical perspective rather than in terms of the dreams I actually wanted to achieve and working backwards from that point. Disability not ability focused. I was losing faith in the system, the professionals and I’ve never lost faith in anything in my life, not even when they told me in India I had a 1% chance of living, and that was being optimistic!

Then I was fortunate enough to be introduced to the Right to Control pilot scheme, which appeared from my previous experiences of services a far more pragmatic, intuitive and realistic means of achieving people’s outcomes. People who needed support in their lives, in this case, accessed six key funding streams and support services; Right to Control was designed and implemented with the full involvement of the people they were actually designed to support, not just the professionals providing those streams and services. I’ll never forget the comment of one of the ‘older statesmen’ of the group who, as a gentleman accessing services for many years had effectively been calling for what we now call ‘co-production’, ‘what I like about this project is that it recognises this – “nothing about us, with us” ‘. Genius, and bang on the money I thought…and still do!

Coproduction is a breath of fresh air in achieving success in projects which are designed to enable people living with support needs to achieve outcomes. It works by bringing people with fantastic, real, ‘lived experiences’ lessons which a team can draw from to -not consult- but integrate and use that profound insight, professional real life knowledge into the design, implementation, decision-making and overall success of such projects. Coproduction works because everybody is given the same level of ability to input, the same level of respect and the same ability to feel the sense of achievement & accountability when the schemes inevitably work time and time again.

Why? Because teamwork makes the dream work, because people’s life experiences living with support are real and they are essential to consider in the design and delivery of any such project; because coproduction is truly the only way to work and it will always work in such circumstances if indeed the fundamentals of coproduction are adhered to – a level playing field for all, A true, positive team ethic, real life experiences which are valued and involving people who bring a solution-based approach!

Because my support system works, thanks in no small part to coproduction, I now run a successful international business, am involved in several national groups such as the Think Local, Act Personal national coproduction advisory group, the Personal Health Budgets peer network group and more locally through Breakthrough UK I facilitate the award-winning Disability Design Reference Group for Transport for Greater Manchester. I have the privilege of working with exceptionally talented individuals including Lorraine and Helen, and, much more importantly because of coproduction, that have the assurance and satisfaction that people’s support needs are in much, much safer hands – and that we, the people accessing services, have the input and accountability to live our lives in a way which we consider ‘normal’ – at least for us as individuals :-


10 Statements of co-production

This month I co-facilitated the last of a series of 9 events. I have been working with the Coalition for Collaborative Care, spending a day with each of the of the Integrated Personal Commissioning sites. We were supporting them to develop their strategic plan around care and support planning, and ofcourse, co-production is key to this.

As part of these sessions, a member of the co-production group shared the graphic of ‘what good looks like’ and a handout to help people evaluate how they are doing. This was developed as part of the Think Local Act Personal (TLAP) guide to care and support planning and I wanted to share how these 10 statements of co-production were developed and ways people can use it.

What does good look like.png

I developed the TLAP guide with colleagues at NDTi, working with local authorities to explore what the Care Act (2014) would mean for councils.  I wanted to go further than the brief to explore compliance and costs and also look at whether care and support planning is happening in the way that people want. We need to both be compliant, and be moving towards what people want and expect from care and support planning – what good looks like from the perspective of the person. In the guide are 10 powerful statements that set the standard for what people want.

We brought together members of the TLAP National Co-production Advisory Group and the emerging equivalent at the Coalition for Collaborative Care to develoUnknown-22p a set of statements that reflect how care and support planning has to keep the person at the centre of decision-making, and be done in a way that maximises people’s choice and control over their lives and services. We did this though sharing stories with each other of people’s best experiences of planning, and distilling the key elements of that into the set of ten statements. I think they are appropriately ambitious and challenging, and set an agenda for what coproduction at the individual level looks like.

“Really? I can have this? This is possible?” was tUnknown-23he response from one carer when she read them.

From the statements I developed a checklist for both practitioners and people receiving support. This is simply a rating of 1-5 against each statement. Here are some of the ways that the 10 statements  could be used:

  • To share with people what they should be able to expect from services – so that everyone has the same, shared understanding of what good looks like in relation to co-production
  • Within induction and training, led by people who use services
  • To inform satisfaction surveys and evaluation – is this what people are experiencing?
  • To share what is possible by gathering stories of good practice to share across organisations, for example, ask teams to choose their top three stories that reflect the statements
  • For individual self-reflection for pratitioners. Where are you doing well? Where could you improve? How can you do this?
  • With managers, to agree goals within supervision. One example is that managers could ask for specific examples of how colleagues worked towards these statements in developing care and support plans or in person-centred reviews.
  • Within teams to agree team goals to improve co-production. Here are some examples: ask everyone to share an example of how they are working towards a particular statement; ask each team member to share their biggest success around another statement, ask each team member to think about what they do that is working/not working around each statement.
  • With other managers, for example as a practice group or as part of an organisational development programme


Please email me if you would like a copy of the checklist ( and please share your ideas of how we could put them into practice.


Can ‘Parents of Disabled Children’ and ‘Professionals’ have true working partnerships?


Today’s guest blog takes us to co-porduction and parents of disabled children, by Joe Whittaker.

Coproduction is not, or should not, be limited to health and social care: we hope that by looking at other sectors aiming to practice coproduction we can identify similarities and learn lessons. This week’s blog is from Joe Whittaker, an academic who has worked for years in further and higher education, and who acts as an advocate for parents and disabled people, as well as being the recently – retired chair of the Alliance for Inclusive Education (ALLFIE).

“You have to love your own baby becos everone says they are a nusance”

Sally age 8

A parent of a disabled child will get whatever support they believe the child requires in school – IF it matches with what the professionals are prepared to offer. If you require something different ,’the parent’ becomes ‘a problem’ to ‘the professionals’.

This parent may be a medical doctor, a police officer, a plumber, a lawyer, a home carer, an MP, even an education inspector but, in their role as a parent of a disabled child, who is challenging the professional narrative, their place in the hierarchy is determined as ‘ less than’ the professional. The more articulate and assertive a parent is, in support of their child, the more they are seen – and have been described – as “bloody awkward”, “too pushy”, “in denial”, “neurotic”, “deranged”,”obsessed”, “too emotional”, “aggressive”, “irrational”, “too involved”, “unhinged” and “unrealistic”. These are just a few of the labels given to parents who expect something different from what the professional has to offer.

This is the context from which local authorities have, for many years, called for partnerships between ‘parents and professionals’. It is indeed a laudable aim. It is however my assertion, based upon 35 years of advocating with parents of disabled children, that there is a systematic devaluation of a parent with a disabled child, particularly when the parent is challenging the narrative of the professional.

Meaningful partnerships are based on equality for the parties involved. In particular those with power to provide service, the professionals, have to learn to listen more effectively to those denied power, the parents. I assert that disputes occur when there is a failure to listen to parents, particularly when a parent does not accept the professional decision.

Does this mean that parents are always right about their child’s support requirements and the professional should always accept the parents’ narrative? Such an assertion is clearly absurd and unhelpful to both parties. It is as inappropriate as assuming the professional always has the answer.

Let us however, consider the two parties in this context.

Professionals :

*        Have a salary.

*        Have an entitlement to travelling and subsistence expenses.

*        Have an entitlement to contracted working hours.

*        Have an entitlement to their access requirements being met.

*        Have access to administrative support.

*        Have access to line management support.

The list is illustrative: these items are, however, part of the typical working conditions that have been struggled for and established over many years and should be robustly protected and enhanced.

For a parent to be in partnership with a professional there has to be a reciprocal practice. Parents, I argue, to be engaged in partnerships with professionals at meetings and other joint enterprises :

*        Should have their access requirements met e.g:

Payment for attendance plus travel and subsistence expenses.

Support for childminding.

Support for other dependants.

*        Should be fully involved in deciding appropriate times, dates and locations of meetings.

*        Should be fully aware of the agenda for each meeting, prior to meeting.

*        Should have administrative and mentoring support from the host organisation.

  • In addition, if the parent is involved or invited to deliver any training, they should be reimbursed accordingly, in line with professional fees.


The above are prerequisites, they do not guarantee partnerships. Only when parents feel they are being listened to by professionals, will parents be likely to be open to making their valued contributions, which in turn results in greater confidence from both parties. If such an environment can be created this is more likely to result in openness, transparency and honesty, followed by consensual and constructive discussions. This then provides the real opportunity for power-sharing relationships to evolve and from which all parties benefit.




Co-production – the hallmark of a person-centred organisation


Last week I (Helen) was speaking at the Hospice UK conference in Liverpool explaining why I think it is important that we know what matters to both patients and colleagues. I don’t believe that you can expect colleagues to work in a person-centred way, in health or social care, unless they are also supported in a person-centred way. This is why the whole notion of person-centred organisations is critical – being person-centred has to be system-wide, and not simply an expectation of staff. This made me wonder if it is also true for co-production?

Co-production does not stand-alone. There must be a correlation between valuing and investing in co-production, listening and responding to staff, and working in partnership with stakeholders. You would therefore expect a person-centred organisation to have both a culture of co-production with people who use its services, empowerment with colleagues, and partnership with stakeholders, so that everyone is working together to create change.

If co-production is hallmark of person-centred organisation, what would we see? This would mean that people would have comprehensive and clear information about what is possible and what is available to them. The organisation would need to know how everyone makes decisions and communicates them, and, where people do not have capacity to make decisions themselves, advocacy was available and that decision-making always remains in the best interest of the individual. As well as leading decision-making in their own lives, people using services would have opportunities to influence how the organisation develops, and to co-produce change.

If this is important to an organisation – would they declare it? Do you know of any organisation that is explicit about co-production in it’s mission or values? In this series of blogs we have heard definitions of co-production from different voices, and there is a clear sense that the term ‘working together’ just does not address the issues of power that co-production demands.

I went back to some earlier work I had done with Stephen Stirk on creating person-centred organisations, and looked at some of the examples of mission, vision, and values that had impressed me then. Looking at them now with fresh eyes, there is little that you would recognise as an ethos of co-production. Except this one, from support provider, Certitude;

Certitude believes that true and proper involvement begins with people being involved in decisions on the most fundamental elements of their support: who, what, how, where and when.

Certitude also believes in the importance of listening, valuing and acting upon what people are telling us through these decisions. The quality of our organisation depends on our ability to listen and shape our services as a result of what people tell us.

How we ensure that everybody we support is involved in decisions about their own life therefore forms the basis of our involvement strategy. Without this, meaningful involvement at any other level is not possible.

Our strategy also seeks to ensure that those who want more involvement in the way the organisation strategically develops have opportunities to do so.

It is an ambitious strategy; we will be able to evidence the following:

  • Everybody is involved in decisions about their own life.
  • Those who want more involvement in the way the organisation strategically develops have opportunities to do somission

Thinking about co-production as central to what we would expect of a person-centred organisation is changing how I work. I am often asked to support organisations to develop one-page strategies, that describe what success means to them and how they are delivering this. This is where I can start to have the discussion about co-production, and encourage explicit statements of how they support people to direct their own lives, and co-produce change. Please share any mission statements, values statements or strategies that are explicit about commitments to co-production, it would be excellent to have examples to share.