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Breakthrough – co-production in practice

As this series of blogs progresses a number of themes and trends are emerging, not least from those which are constructive in their criticism, and here I , Lorraine, want to take one of those themes and illustrate it with a particular example. In a recent blog Bernard Leach flagged up the notion of uneven balance of power as a potential block or problem, and indeed there are many and complex reasons why this is the case. However, if it is recognised then this imbalance can be addressed and the context and conditions that support and maintain that imbalance can be tackled, leading to real change.

In Manchester July 1st 1998 marked a significant development in relation to disability, employment and training: this was the launch day when the culmination of several years of planning and hard work came together to mark the full operation of a new initiative called Breakthrough UK Ltd., the setting up of which was a prime example, from twenty years ago, of coproduction in practice.

This came at a time when many local authorities across the country were taking on board equal opportunities issues in a big way and in Manchester local disabled people had pressed hard for disability to be included alongside race, gender and sexuality as the major areas being addressed, and the local authority had responded positively. Employment and disability was one of the issues considered via equal opportunities structures, with local, segregated provision being looked at critically. Disabled people on the Manchester City Council (MCC) Equal Opportunities sub- committee argued that this was in fact provision which maintained disabled people in low- paid work with little chance of promotion or advancement, and that MCC should redirect the money to more appropriate provision. To cut short a rather long political story, over several years this proposal was agreed as a way forward – with a major plank of this strategy being to set up a new company, controlled by disabled people and completely independent of MCC, to develop and deliver more appropriate employment support.

To be sure, this was a huge project: it required commitment and partnership working from local disabled people’s organisations, the local business community, and the local authority – and these were by no means always readily forthcoming! It required reallocation of existing budgets (always hotly defended) and new funding; it required trade union input over transfer of staff; it required HR and legal advice, as well as advice on charity and company law, and the knowledge around putting in place the structures, policies and procedures needed to get a ‘start up’ off the ground. It needed commitment, and a willingness to change from all those involved – which must be demonstrated most clearly by those in a position to ‘make things happen’ (or indeed, those who can stop things happening), and they must be proactive in that demonstration. It is a given that ‘nobody likes change’ which is why it is so important that reluctance is identified and tackled, that vested interests are challenged, and that a ‘willingness to let go’ is not only supported but encouraged.

But most of all it required that disabled people and their organisations were recognised as equally valid partners by those others involved.

The establishment of Breakthrough was the design and delivery of a joint aim from very different directions. It would not, could not, have happened if those who held held the power, who were the decision makers had not been prepared to encourage and support the initiative and to ‘let go’ where needed.

And look, just look, at what coproduction can achieve.

 

Embedding Co-Production in Health and Care organisations

Bernard Leach has been involved in the disabled people’s movement since the early 1980’s. He is a member of the C4CC Co-production group, and here he shares his reflections on the NHS Expo 2015 held in Manchester.

This was one of the popup university session at the NHS Expo and was led by Ceinwen Giles, cancer survivor. Like other successful sessions it was bBernardased around small group discussions where you could actually get to meet and discuss with other people. This was important to me as the overall NHS Expo experience was pretty alienating. Men in suits and glossy stalls and salespeople, everyone with a lanyard and a badge. Being retired I’d forgotten what these things were like.

Anyway, back to the co-production session. There was an excellent presentation by Amir Hannan (a General Practitioner, Board member for Tameside & Glossop CCG leading on Long Term Conditions and Patient Engagement & Empowerment) about the cultural change needed by clinicians and managers to fully commit to public engagement – lots of training on learning to listen and to trust patients (not straightforward).

“why” until you reach the underlying source of the problem. The question was what stops co production from working? Lots of interesting stuff came out of this. First of all was an observation that the term “co-production” wasn’t that helpful. Whereas “patient involvement” is fairly self-explanatory, the term “co-production” has to be explained and strikes many people as tokenistic, trendy jargon leading to a cynical and hostile response based on how previous initiatives had failed.Then on to the best bit of the session where Ceinwen used the Five Whys tool. This says that when a problem arises, simply keep asking the question

Out of the small group discussions a range of ideas about blocks and problems arose:

  • Uneven power relationships between professionals and other (voluntary groups, volunteers, users, patients). Doctors are generally revered.
  • Uneven access to resources – who hold the purse strings?
  • Cynicism or even hostility based on previous initiatives.
  • Not all patients want or are interested in co-production. There are others who want to be involved but can’t do so for whatever reason.
  • Imbalance of perceived expertise – GPs might feel – “why should I, who has studied for 10 years listen to someone who has had a condition for 10 weeks?
  • Doctors can be surprisingly insecure and touchy about feedback (especially if it is critical). They want to be liked and can be fearful of criticism.

It was agreed that a change of culture was needed in the move away from a purely medical model to an understanding that patients and carers had valuable contributions to make. A move from a target based culture to a values based one. People with long term conditions have skills and resources that can be unlocked, but doctors have limited time and resources to access them. The evidence from places like Tameside & Glossop (in Greater Manchester) is that when training in such skills is given across the board, the benefits become immediately apparent. All in all, a very thought provoking workshop.

Operating Rules and World-Views

UnknownA Google search on co-production reveals six books, and one of these is Co-production and Personalisation in Social Care, by Susan Hunter and Pete Richie, (Jessica Kingsley Publishing). I am keen to read as much as I can, and if you have book recommendations, please share them.

This book was on my summer reading list and I must confess to a degree of bias, I am a fan of Pete Richie’s clear, values-driven thinking and writing, so out of the 6 books on Google, I started here.

Susan Hunter and Pete Richie introduce the idea of operating rules for co-production, and explain how these rules emerge from a ‘distinctive world view’. They argue that co-production can only be successful and sustainable when this world view is consciously adopted. Without this, co-production is in danger as being seen as a technical bolt-on to an existing service system.

This table, from page 17 of their book, is a helpful step forward to describing what needs to be in place – some rules around co-production, and the philosophy or world-view that underpins it.

 

Operating Rules

Underpinning world-view

People who rely on services involved in defining the problem as well as developing and implementing solutions

Recognising that different people interpret situations differently, hold different values and have different investments in a solution, and seeing the goal as securing a shared commitment to action rather than enforcing a single right answer

Tensions and differences between stakeholders discussed openly

Recognising that the interest of professionals and agencies are not identical with those of service users, and that saying one thing to people’s faces while writing something else in a report is almost always in the interest of the professionals rather than the person served

Focus on quality of life issues not just clinical or service issues

Humility about the role of services in people’s lives, and honest awareness of quality and limitations of what is delivered

Engagement of people who know and like the person

Seeing people as part of a social network: and valuing the contribution of friends and family as much as that of professional staff

Use of ordinary language and settings as deliberate strategy to reduce power differences

Recognition of the games that people play to enhance distance and retain power

Engaging the wider community, and viewing this as a resource not a threat

Looking in from ‘out there’ as much as looking out from ‘in here’

A focus on gifts and capacities rather than deficits

Actually believing that everyone has something to offer society

 

We have published 6 posts now on co-production, are we getting any closer to what it is yet, and how do you know it when you see it? 

 

Co-production – I wish it well

One of our aims in this blog is to generate interest and responses, and so we are encouraging a wide range of views. In this way we hope to contribute to both extending the parameters of coproduction and to moving to make it happen in reality. Huda, this week’s guest blogger, makes a valuable contribution to that process.

An initial response to ‘co-production’….

I have to confess reading an explanation of ‘co-production’ with a sinking heart: “Oh no, here we go again, I’ve heard all this before – new label, old content”, I thought with a groan and a sigh.

So, am I a disillusioned cynic, a perceptive realist or simply a knackered participant (I hesitate to call myself an activist though I have been described as such) burnt out with the time-consuming (and sometimes almost soul destroying) process of engagement and involvement that has proved largely futile in delivering real and sustainable organisational change? Who knows – perhaps I’m all these things – but this is my dilemma: unless you’re a dictatorial fascist steeped in indifferent ignorance or an unaware paternalistic and benevolent altruist bent on doing good regardless of how that all too often ‘bent goodness’ is received who can possibly disagree with ‘co-production’?

Not I for one, but isn’t it the latest name within health and social care ‘industries’ that resembles countless previous initiatives down the decades advocating similar values?

Amongst other descriptions, I am a black disabled woman and a qualified (person-centred trained) psychotherapist who has served as a non-executive director within the NHS. There are many things I am passionate about – not least culturally appropriate and relevant values of dignified inclusion, choice, control, independence, justice and equity (I’m not that fond of the word ‘equality’ because it’s become a lazy shorthand for meaning that we are all the same and should be treated as such – and, clearly, whilst we should all be of ‘equal’ value, we are uniquely different so to be treated ‘equally’ is oppressive). In psychotherapeutic terms my focus is on reaching our human potential – holistically and practically – or, at the very least, approaching that potential as best we can.

For this to even begin to happen barriers that prevent or disadvantage human potential have to be removed rather than ignored, denied or excused – both by those who experience them and by those who impose them whether advertently or inadvertently.

Sadly I have come to the conclusion that the closest I’ve got to experiencing effective ‘co-production’ that makes a difference to human potential is within the one-to-one therapeutic relationship whether that be client-with-therapist or supervisee-with-supervisor.

Does this mean sustainable ‘co-production’ is doomed to failure at an institutional level? Or, put differently, why is it that ‘co-production’ is nothing new but has merely donned various names from past initiatives and will, no doubt, don new names in decades to come? Indeed, I would suggest that if previous initiatives had been fully implemented and imbedded ‘co-production’ would not now exist – there would be no need for it. Looked at from another angle, examples of good practice would be the norm rather than the exception (if, indeed, sustainable examples can be found).

I believe this unending cycle of ‘same old same old’ will continue unless some of the following systemic, structural and cultural based barriers are addressed (though I should add that no human being can be forced to reach their unique potential even if barriers become non-existent):

Power imbalance: there’s an inbuilt hierarchy between not only ‘professionals’ and employees within organisations but also between service ‘providers’ and service ‘users’ and here it must be noted that the very language used is in itself a barrier perpetuating a fundamental power imbalance between active subjects (the ‘givers’) and passive objects (the ‘receivers’). I would even suggest that ‘the powers that be’ neither want to deal with active ‘receivers’ of services nor know how to due to their varying degrees of assertiveness, confidence, expertise, perceived ‘militancy’ and difficult ‘challenges’ they often present for ‘professionals’ who, in fairness to them, can also feel disempowered by organisational restraints. Furthermore, initiatives all too often are either imposed from the ‘top’ or sneak in underground from the ‘bottom’: rarely, if ever, are they inspired from both ends in any integrated and effective way. The question for me, therefore, is whether it’s ever possible to get rid of the thinking and language underpinning organisational hierarchies of position and status and implement a working ethical practice of differing roles and responsibilities (from CEO to cleaner and service ‘provider’ to service ‘user’) in a way that reflects diversity and avoids marginalisation? After all, all are essential to the life of the organisation and the fact that some are paid more depending on these differing roles and responsibilities doesn’t need to reflect the dubious value of position and status.

Short- and long-term imbalance: it seems to me that organisational focus within health and social care intrinsically favours the short-term over the long. Driven by crisis after crisis these institutions are constantly fire-fighting and are thus forced to react to people’s lack of health and wellbeing rather than proactively promoting these: cure and ‘fixing the problem’ takes precedence over prevention as does ‘sickness’ over ‘impairment’ and ‘acute’ over ‘chronic’ conditions. A medical model approach invariably gets overall attention even if a social model approach gets a look-in every now and then. Removing social barriers doesn’t seem to be as ‘sexy’ as removing medical ones: the former is essentially a long-term commitment dependant on building meaningful relationships to make any impact whilst the latter wins clever experts funding and the publicity of accolades especially where lives are saved. If this is the case then the question is whether health and social care will ever be able to invest and build for the future in a way that is effective and sustainable whilst still having the capacity for responding to immediate crisis: can such an approach be embedded systemically in organisational structures, procedures and policies to endure the inevitable turnover of staff, changing technology and constant strain on budgets and resources that seem to prioritise performance targets over quality of life? And if the answer is ‘no’ then concepts such as ‘co-production’, like its many predecessors, will result in little more than tinkering round the edges of disempowerment and marginalisation wherever it’s experienced.

Piecemeal and holistic imbalance: too much of health and social care interventions and initiatives lack cohesion and integration because, essentially, they fail to see human beings holistically. On the contrary, the physical, psychological, social and spiritual aspects of our total wellbeing are outsourced to different ‘specialists’ often located in scattered ivory towers. And this even when, in theory, it is recognised that human wellbeing is multifaceted. This imbalance is exasperated by the competition between public service and privatised business where valued indicators are driven by profit and a divide-and-rule approach to winning lucrative contracts. Even the voluntary and independent sectors have been forced to bend the knee to market forces and mission creep has replaced their original reason and purpose for existing in an attempt barely to survive: evidence-based outcomes, whilst serving a useful purpose, has become an obsessive mantra that fails to recognise that many things of worth and value cannot be proved.

So, am I against ‘co-production’? On the contrary, I wish it well!

Huda B Bishara

5 ingredients for co-production

Shahana

Shahana Ramsden blogs for us today on her 5 ingredients for co-production. She is the Senior Co-Production Lead NHS England and the Coalition for Collaborative Care (Co4CC). Shahana’s 29 year career includes supporting co-production with people who use services and carers and leading equalities programmes. Prior to her role with NHS England and Co4CC, Shahana worked as a Patient and Public Voice Manager for NHS England’s Patient Online programme. Shahana has been recognised by the Health Service Journal as a BME pioneer and was highlighted as one of 100 virtual change activists for Health and Social Care through NHS IQ (The Edge). 

Working in Co-production with patients, people who use services and carers can be simultaneously simple and complex. It is messy, not linear. When it works well we have to prepared for a change in culture so that we avoid fitting people into boxes and are prepared to position the organisation around them.

I remember the first time that I was convinced to use the term “co-production” to describe the concept of working together with patients, people who use services and carers in equal partnership. The discussion took place in a basement room in the Department of Health with the previously named “user reference group”. The group voted unanimously to be named the National Co-production Advisory Group – symbolising their desire to move away from being a group that people would consult with, to a team of people who would work in equal partnership; co-designing, co-delivering and co-producing national policy.

As someone who has worked in the fields of engagement, involvement and participation for many years, it is encouraging to see so many organisations are now using the term “co-production” to represent a new way of working. However all too often organisations can adopt the new language, without changing the way they work.

So what is needed to make co-production happen in practice? I have set out 5 key ingredients needed to make co-production happen in practice.

1. Empowered staff lead to empowered patients

I remember working for an organisation where I was employed as an engagement lead; part of an inflexible hierarchy, where it was clear that my own voice as a member of staff would never be heard. It did not take me long to realise that I was participating in a token exercise. I knew that if I felt invisible, it would be impossible for me to enable the members of our patient and carer groups to be heard. It is essential that senior leaders who want to involve patients and people who use services are prepared to model certain behaviours such as allowing respectful, open and honest feedback and a culture of listening. This will naturally move teams into a space where they are ready to hear the voices of patients, people who use services and carers.

2. Use the 80/ 20 rule

The concept that co-production means starting with a blank sheet of paper is a good one, but we need to acknowledge that in reality this is unlikely to happen in a pure way. There is always a past, present and future to every piece of work, so planning in a strategic way and being honest about where we are can help to build trust and achieve better outcomes.

I have found that the most effective approach to co-production involves targeting specific areas that can be influenced. The question I ask is – how can the expertise of people who use services really shift the organisation into thinking differently? We need to put people in positions where they have the maximum opportunity to influence and where the concept of shifting power to patients is embedded throughout the whole system. This also involves making some difficult decisions about what we will not be able to influence.

3. Value the “usual suspects”

I often find myself in rooms with senior decision makers where professionals have worked together for many years and developed positive and constructive networks over long periods of time. In contrast, when it comes to patients and carers, the same professionals are often quick to dismiss the so called “usual suspects” who have been using services for decades in favour of “new” people.

It is, of course essential to proactively include people who do not find it easy to get involved and to promote diversity at every level. However, the reality is that people who have been involved as patient or carers for many years have valuable experience of what has happened before and have seen policies and structures dismantled and then reconstructed. They have developed their own powerful networks, wisdom and influencing skills over many years. It is important to value their expertise and learn from them.

4. Use the right tools

I have “get me a patient” conversations several times a day. This starts with a plea for help at short notice, requesting a “real patient” who can share a 10 minute personal story, followed by the confession that there is no budget to pay for their travel. I acknowledge that there is a place for a personal story, which can often influence people at an emotional and human level in a way that has a powerful impact however to do this without a wider co-production strategy can lead to tokenism. This approach can become a dangerous quick fix that organisations begin to rely on.

It is important to use the right tools for each task. Co-production where patients, carers and people who use services become an extended part of a team, where people are recruited due to their influencing skills and experience is a long term commitment and needs to be well resourced. However there will be times where a large scale consultation of thousands of people is required, or where data and information from multiple studies and these programmes all within the remit of consultation and public engagement rather than co-production.

5. Make it a great experience

Often when we produce ground rules for meetings, an enthusiastic group member will add the words “have fun”. I welcome this as I feel that creating an environment where the process of co-production is meaningful and enjoyable is essential. It can be about creating a positively focused network where people feel supported and feel they are learning, building networks and they enjoy the process of engagement.

Final words…..

I welcome the focus of the Five Year Forward View on a “more engaged relationship with patients, carers and citizens”. However the risk is that organisations will get better at adopting the language of co-production, without changing their culture or approaches. I have adapted a well-known quote from George Bernard Shaw to read “The single biggest problem in co-production is the illusion that it has taken place.” Let’s have a dialogue about what we need to do to make sure the concept of co-production can move from illusion to a reality.

The where, who and how (things might change) of co-production

Lorraine: In my introductory blog (was it only four short weeks ago?) I said that we aim:

‘to widen the [coproduction] debate and to reach out to people and groups who may not yet be involved.’

In this blog I thought I’d unpack that a little more and consider where coproduction is happening, where it might not be, who is involved and who might not be, and ask how might things change if we address these matters more proactively.

The Coproduction Group of the Coalition for Collaborative Care (Co4CC) – under whose banner we began this blog – has a specific remit to work within the realms of health and social care on long term conditions and is already doing some sterling work. However, in that respect it can be instructive to our plans to ask if specific population groups and minorities are being included, or not, and how. It can also be valuable to look at other sectors or areas and ask if coproduction is being employed, for surely important lessons can be learnt and principles shared?

For example, how far is coproduction employed in the field of education, or in transport? At first glance these topics may seem to be rather removed from health and social care matters, but let’s look a little deeper for the links. My enquiries about education led me to interesting discussions with a future guest blogger who until recently chaired the Alliance for Inclusive Education[2] (ALLFIE) including the complementary/contradictory roles of students/learners and parents/carers. Lessons here perhaps about how to handle the dynamics of relationships? Transport is one of the ‘Seven Needs for Independent Living‘ one of the cornerstones of the disabled people’s movement, and is surely closely linked to matters of health and social care – a volunteer guest blogger here would be very welcome!

Are there groups of people who are not yet much included in our coproduction plans and activities? Another future guest blogger has pointed me in the direction of a group of (D)deaf LGBTQ people, whose views would surely enrich both our discussions and our practices? And how effective, I wonder, are we at including people from BME groups? There are language and cultural characteristics which make this a challenge, to be sure, but in all the examples mentioned here I am reminded of a long-gone colleague who once said:

‘It’s not that some people are hard to reach, they’re just easier to ignore.’

In one response to a previous posting of this blog on Facebook someone enquired about making the blog available in audio format, and this begs the question for me about how do we reach out to marginalised/excluded groups? How do we inform and educate our partners in Co4CC about coproduction and best practice? Indeed, what is best practice? And this leads me neatly back to one of the purposes of this blog – to identify and illustrate best practice. Please let us know if you feel you’re delivering best practice, or you know someone who is, or if you feel you have lessons to share. The rate at which these blogs already get shared is encouraging: now we’re looking for more comments and contributions – the good, the bad, and the ‘not so pretty’ – to help us get to that ‘best practice’.

What is co-production?   The clue is in the name – it means working together to jointly produce something.

Lorraine: One of our aims in hosting this blog is to take a ‘warts and all’ approach to discussions. In order to do this one of the things we need to do is to take an objective look at the challenges faced by those trying to adopt coproduction – this week’s blog fits the bill perfectly and we look forward to a lively debate!

Dr Jenny Morris has written many books about both feminism and disability. Prior to retiring in 2010 she worked on disability policy for 25 years, including leading the Labour government’s Independent Living Strategy and working on the Right to Control. She writes a blog at jennymorrisnet.blogspot.co.uk. Here is her blog on co-production.IMG_0283

Most initiatives which use the term in the context of health and social care in the UK are not co-producing anything. But here’s an example from 1996, in fact before the term was adopted in this country:

Newham People First, a group of people with learning difficulties, supported by a worker funded by Newham Social Services, inspected the group homes in the Borough. Based on what people living in these homes told them, they then developed a set of standards that they said group homes should abide by. Working together with those commissioning the group homes they put these standards into the contract for the services.

So people with learning difficulties and commissioners jointly produced a new contract.

The problem is that co-production has been introduced in the context of:

  • political pressure (both within and outside government) to increase the marketisation of public services
  • reducing budgets leading to…
  • an increased role for professional discretion in determining and controlling how resources are spent.

Progress has been severely curtailed by the fact that what is called ‘co-production’ is now entangled with the government’s aim of reducing the size of the state. This is particularly clear in the case of ‘personalisation’ of social care.

Personal budgets and direct payments do not in themselves create co-produced responses to people’s needs. In fact their implementation all too often means that:

  • professionals devise ways of determining budgets which lack transparency
  • assessments are of eligibility rather than of what is required to produce good outcomes
  • budgets and direct payments have conditions attached to them which relate to bureaucratic requirements rather than what is required to deliver user-defined outcomes
  • the whole system is underpinned by a lack of trust and very little acknowledgement of the individual’s expertise in determining how best to meet their needs
  • rather than working with individuals to facilitate and empower, professionals introduce conditions which mitigate risk to their organisation while transferring other risks to the individual and their family.

So an idea which was truly radical in its origins has been subverted and is thereby open to legitimate criticism from those who should be our allies. This is the result of the conditions of its implementation being completely at odds with the original aim – to put control in the hands of those who need support.

My own local authority says that, if you choose to have a personal budget rather than a direct payment, you can only use the one service provider they have chosen (a multi-national company with no history of operating in our area). Which, they say, “will give you more choice and control over how your care and support is delivered” (sic). The commissioning policy which created this situation was certainly not co-produced.

Health and social care services are experiencing a financial, and political, crisis. Perhaps the only silver lining is that crises potentially present opportunities. There are many people working within health and social care systems who are truly committed to enabling choice and control, and to working with disabled and older people’s own organisations. Our only hope is that the crisis opens up opportunities to create radical innovations which lead to real change. But such change will not come about unless meaningless rhetoric becomes reality.

So please don’t use the term co-production unless you are actually working together to jointly produce solutions which deliver choice and control.

choice and control.

A new ladder?

Today I saw co-production in action. Commissioners want to achieve a different experience for patients. They worked with a patient champion group to develop the tender. Together they defined the outcomes and experience that they wanted to see delivered. I was at the introductory meeting with four other organisations who want to bid for this work. We were invited into a room with 6 round tables, and at each table were two patient champtions. The morning was designed for us to listen to patients, and we heard five different patient experiences, told in peoples own words. There is so much that needs to change, and it was a moving and powerful experience. Then we had an opportunity to ask patients questions. Naturally, patients are part of the decision-making panel too.

This was impressive, and an excellent demonstration of what co-production looks like, however they called it co-design. Does the language really matter?

Why don’t people just call it ‘working together’? was a comment after we posted our first blog on co-production. I can understand this sentiment. In the blog we shared three different definitions of co-production and there are many more.

There are a range of23188075 terms that describe people working together  – for example engagement, participation, involvement, consultation and co-production. However they are not the same. They carry different nuances of power, and how decisions get made. The ‘ladder of participation’ helps separate those that are tokenistic from real examples of sharing power.  Developed by Sherry R Arnstein (1969), the ladder of citizen participation has 8 rungs. At the bottom of the ladder, the lowest rungs are manipulation, then therapy, informing and then consultation, placation, partnership, and delegated power with the top rung being citizen control.

She does n’t use the term co-production, and in 1969 it did n’t exist. Can we create a shared understanding (beyond what the Oxford English Dictionary would give us) for the different words we use to describe working together?

Here is my simplified version to get started:

Informing: We let you know about the decisions we are making.

Consulting: We make our decision and ask for your feedback.

Involving: We take your views into account as we decide.

Co-production We decide together.

The phrases, ‘working together’ and ‘partnership’ could look like ‘involving’ here. I is important that we know what people really mean when they say ‘involving people’ and understand that it is not co-production (or co-design).

Does language matter here? I think it does. We need to move from definitions of co-production to being able to simply explain a new ladder, a range of ways that people are involved in decision-making. To be able to show what good looks like, we need to first know what we mean.

What co-production means to me – by Sally Percival

I (Helen) asked Sally to describe what co-production means to her and her family. Sally is a member of TLAPs National Co-producton Advisory Group and the Co-production group for the Coalition for Collaborative Care. Here she talks about what co-production means at an individual level, at a family level, and how it means designing services together.

“I have been asked to write a blog about what coproduction means to me, but I would also like to share with you what it feels like to me. 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 everyone. It is built on the principle that those who use a service are best placed to help design it.

My son Alex and my mother Audree both have disabilities, I care for them both and organise their care and support. They both have a personal budget and use a mixture of personal assistants and a care agency.

For our lives to be good we all have to work together, prior to working in a co-productive way, i.e. before designing the service

lap1we receive together, our life was at best chaotic, unpredictable and very, very stressful. We were given a service that didn’t put us at the centre and we had no control of. Support workers didn’t turn up to take Alex out, often when they did it was at the wrong time or they just didn’t know him, Alex would end up screaming and hiding under his bed really distressed and my mother was often forgotten or had been “dropped off the list”, resulting in her not being fed or getting her vital medication. It just didn’t work on any level and was a total waste of time and money. BUT, when everyone works together from the start it makes you feel equal, it makes you feel valued and it makes you feel very, very relieved!

Co production isn’t new; it just hasn’t been put into practice. We used to believe that professionals knew best, we expected their solutions and accepted them gratefully. We are now beginning to understand that we need to be involved from the start in all the discussions and decision making, we need to take some of the responsibility if it is possible. Experiencing what works well and what has not worked well, in fact what made things worse has helped me to understand the importance of working together or what we call co production. When coproduction works well it can transform lives, it certainly transformed our lives. Nationally it has begun to happen slowly but surely, as the message and language of coproduction is beginning to spread, but for it to continue spreading we must keep sharing how much better lives are when all parties work together from the beginning. It is so important to listen to people and work with everyone, start with a blank agenda and let ideas blossom together, particularly make sure all of the discussions are accessible and as inclusive as possible so that everyone has a clear voice. I am not saying it is easy but for us as a family it has been easier than coping with a care and support system that just didn’t work.
I will leave you with this – Co production is a verb, it is a doing word, it is an action word that needs you to do something, so go out and do it but always make sure you do it together!! ”
IMG_1856