Category Archives: Co-production

Being positive about being positive

Often when we talk about HIV today we forget that for many people and communities, stigma is real. It’s still affecting people and their communities. Moreover, stigma is a tricky little beast; good at hiding.

Throughout the many years that we’ve been challenging these acts of disability-related hate crimes, it seems that many people have not been educated or exposed to the 21st century facts about living with HIV.

This is where stigma gets its mojo – when people perpetrate unkind acts that negatively affect others.

The global management of HIV is one reason people have told me why they haven’t felt able to take a test to find out their status. Their fear of a positive diagnosis, even within the UK where we have the Equalities Act and a strong evidence-based community, stems from personal fear.

Among the many labels out there, we now have another label for people –‘undetectable’. But for me, positive is positive and I ignore the medical narratives of infectious and undetectable.

Labels don’t help anyone manage the challenges of living with HIV – the label fuels the stigma. So, my view is that I’m being positive about being positive.

Too many of our brothers and sisters have poor health as well as psychological and mental ill-health issues related to that stigma.

Stigma is real and tangible to many of us, and I’m fed up with people feeding stigma with its trite treats of denial and apathy. Saying “times have changed” is a main course to stigma.

Walk in my shoes for a day and you would see things haven’t really changed. Intersectionality, the overlapping of discrimination, has an unpleasantly close relationship with HIV.

You could serve a smor- gasbord of HIV + poverty + BME + women + LGBTQ + groups that are so under the radar they are barely mentioned by the system.  These groups are stigmatised and living with stigma on a daily basis.

How can we really make a difference? It’s been over 30 years since the epidemic started affecting so many communities. I want to say to the world that we need to eradicate stigma with kindness and openness.

To mark last year’s World AIDS Day 2016, I set out to take steps towards reaching this goal. I went to Trafalgar Square to ask strangers to give me a hug with the tantalising invitation ‘Hug me, I’m HIV positive.’

I truly believe what a real grass-roots activist once told me – “Stigma kills, not the virus.” The late Elizabeth Taylor said, “It’s bad enough people are dying of AIDS, but nobody should die of ignorance.”

That’s why I’m positive about being positive. Maybe the global route won’t reach enough people so we need to make this battle against stigma and ignorance personal. So let’s tackle it, one person at a time, and leave a very nasty taste in stigma’s mouth by spreading knowledge, experience, hope and hugs.

This year has been all about supporting people to access the facts about HIV, to break the myths, and on Saturday December 2nd my Forest Gate Pride Committee took part in a community initiative to do just that and also to share a few hugs.


Isaac Samuels, member of Think Local Act Personal’s National Co-production Advisory Group (NCAG)

C4CC: HIV in Hackney

Kristi Adams, C4CC’s Senior Co-production Advisor, recently facilitated the second of two workshops, commissioned by the Homerton University Hospital NHS Trust, with the goal of improving the care and support available to people living with or at risk of HIV.

The first workshop back in March attracted more than 80 people, with a mix of people using services in Hackney, healthcare professionals, commissioners and other key stakeholders providing their input and expertise.

Participants explored what good would look like for people, from prevention and testing through to palliative care.  The group identified the good work already happening and how this could be built on to become even better.

The second workshop drew on a smaller group and was focused on the actions and key points raised from the earlier session, identifying what needed to change and how, and how gaps could be filled.

Below, you will hear from Kristi and the people involved in the workshops about why this work is important and how they will help to improve services for people living with or at risk of HIV.

Kristi Adams – Senior Co-Production Advisor, Coalition for Collaborative Care

I was delighted when C4CC was approached by the Homerton University Hospital Trust in Hackney to co-design and facilitate two workshops, with the aim of improving the quality of service it provides to people living with or at risk of HIV.

The hospital is already recognised for its innovative approach. It employs peer navigators who are themselves affected by HIV, to work alongside people in the co-production of their care and provide personalised support during, what can be for some people, a very stressful time.

There was an understanding by the hospital at senior level that more could be done to improve the patient experience through better co-ordination and collaboration with a whole range of stakeholders in Hackney, such as GPs, commissioners and the local authority. It was clear from the outset there was a collective willingness to engage and embrace new ideas and approaches.

This focus on better conversations, the use of community assets and co-production is the key message that C4CC is promoting with its national partners and we will continue to do our very best to provide support to any organisation that wishes to foster the same ethos.

I am confident that what will happen as a result of the workshops and other connections that were made will be to the benefit of the people of Hackney and we have pledged to continue our work with the Homerton as the programme develops.

Professor Jane Anderson –  Director for Centre for study of HIV and Sexual Health Homerton University Hospital NHS Trust

With more people living with HIV than ever before and at a time when the NHS is under enormous financial pressure, the need for all of us to collaborate across the whole health economy has never been greater.

At the Homerton, like other front-line hospitals, we are well aware of the scale of the challenge and we are committed to ensuring best outcomes for people by exploring new ideas and new ways of working.

It was in that context that we worked with C4CC to organise and facilitate two workshops to allow us to identify both areas where things were going well and also to look at where we need to make improvements for people with HIV in the local area.

It was crucial to ensure that everyone involved right across the care pathway could take part and give their point of view. That meant ensuring we included service users, specialist clinicians, commissioners, GPs, elected political representation and our public health team for Hackney.

The task was made easier because C4CC is an NHS England-based organisation, which gave the workshops credibility within the health system.

At the second event, we could build on the themes and outputs of the earlier workshop held in March, using the momentum that had been generated.

I believe that the relationships and potential working partnerships generated through this process will support the development of a ‘whole system’ approach to HIV prevention, treatment and care in our locality, that is based around the needs, perspectives and aspirations of those affected by HIV.

I am confident we have begun a process that will put the building blocks in place to ensure the best outcomes for those affected by HIV within our local area.

Janine McGregor-Read – Peer Navigator at Homerton Hospital For Positively UK

 As a long-term service user, diagnosed with HIV 25 years ago, I have been able to witness at first hand the vast improvements in the standard of treatment provided by the NHS.

In my job role at the Homerton as a peer navigator, I have been able to draw on my own experiences and others to help shape the service that is provided to people, and I believe what is happening here is above and beyond what is generally available.

But we must never be complacent, particularly with the challenges of a client base that is getting older, many with mental health issues and other complex problems. Faced with this challenge, I detect a real desire to find a way to make the system deliver the best that is available, whatever the funding.

The C4CC-facilitated workshops were able to connect people, to flesh out duplications and gaps in service so we can be as effective and tight as possible, giving priority to the areas that are most important to patients.

People have to trust the service they access and for that to happen we have to understand their needs, their concerns and provide the wrap around support to allow them to prosper.

At the second workshop the service user was put very firmly at the centre of the conversations as we look to develop a better working model. Every individual is different so the system has to be flexible to meet their needs rather than relying on the traditional linear model.

Meeting and sharing views and perspectives with people from outside the immediate hospital environment was an invaluable experience and I am hoping that our collective input will have a positive benefit for the residents of Hackney in the future.

Iain Reeves: Consultant specialist at Homerton Hospital

At the Homerton we pride ourselves on the quality of care that we provide for people living with HIV; most treatments are successful and we have good clinical outcomes. But there is a recognition that we need to move beyond that because we have many people with a complex range of physical and mental health issues, in the main, but not exclusively, because of ageing.

Initially, those problems may have arisen because of the impact of a positive diagnoses and the stigma and discrimination this can unfortunately attract.

For this and a host of other reasons, I believe it is vital that we place people at the very centre of a network of care services to provide the support and help they need.

I attended both workshops and found them very rewarding in terms of getting the right people into a room and stimulating the right conversations. For me, the most valuable connections were made with representatives of primary care and a really positive outcome is that we are now looking at new ways of delivering care and different ways to involve people living with HIV at GP and consultant level.

If you would like to know more about C4CC’s work with Homerton University Hospital NHS Trust, please contact Kristi Adams on


Masterclass in Co-production

A masterclass in co-production, hosted by National Voices, in partnership with C4CC, has been hailed as a “classic collaboration” and is planned to be repeated during 2017.

National Voices, under its Wellbeing Our Way programme, used the event in December, as a practical introduction to co-production, including what it is and how to get started.

It was attended by representatives from a broad range of voluntary sector organisations such as Age UK and the Alzheimers Society, plus others with a specific interest or experience of utilising community assets.

“I think one of the big strengths the day is that it was co-produced in terms of planning and delivering the event,” said Natalie Koussa, programme lead for Wellbeing Our Way.

“We wanted to give people a real flavour of what co-production feels like,” she added.

The itinerary for the masterclass included a series of practical presentations on co-production and the use of personal health budgets, with attendees also breaking into smaller groups to discuss various scenarios and practical implementation.

There was also a very personal perspective from C4CC co-production group member Paula Fairweather, on how her life had turned around after she took control of her own treatment, in a classic example of co-production and the use of a personal health budget.

“Paula’s story really touched people,” said fellow C4CC co-production group member Anna Severwright, who also presented at the event.

“For me, personally it was great to meet people in all these different organisations keen to co-produce and to see how much interest in it there was. It was inspiring,” she added.

Innovative approaches to engage hard to reach communities were also highlighted, using website and marketing techniques.

“We asked organisations to really think about the communities they are reaching,” said Natalie.

Specific action points from the masterclass included a series of pledges by attendees, with C4CC co-production group members Anna, Paula and Sue Denmark each offering an hour per week of advice and support for interested organisations or individuals.

“This masterclass was important because we were able to pass on our knowledge and experience of co-production to a wide range of organisations who are actively involved in the health, social care, voluntary and community sector,” said Kristi Adams, C4CC’s Senior Co-production Advisor.

“Our co-production group members can bring real life experience to co-design and deliver workshops such as this and we are going to build on the success of the day at a second workshop in Manchester in March, as well as with other future collaborations with National Voices and other C4CC partners.

Details for the Manchester-based Co-production Masterclass have now been released:

Date: Thursday 30 March 2017
Time: 9.30am – 3pm
Please register for this event here:

Priority will be given to National Voices’ members and members of Wellbeing Our Way’s communities of practice; any remaining spaces will be available for Coalition for Collaborative Care partners.

For further details click here.

Carers Rights Day

Richard Cross, a member of the C4CC Co- Production team, blogs on why Carers Rights Day is so important to him.

For 12 years I was one of the hidden army of carers, looking after my wife Sheila, who had complex medical needs, which eventually led to her being wheelchair bound and totally dependent on me.

It was a 24/7 labour of love and I had to live life through Sheila’s eyes, to meet all her needs, yet stay in control of the situation.

It was tough.

At times it was difficult not to feel resentful and bitter at the hand that life had dealt us at a comparatively young age. I was only 47 when I gave up my full time work as a auditor.

I will admit as well that I made mistakes and had I been able to access more support, I could have made Sheila’s life a lot better, her health would not have suffered so much as a result.

It was only a chance conversation with a local councillor I knew in my area in Cambridgeshire that changed my life, and Sheila’s care for the better.

She was able to cut through the red tape and help me get a much- needed stair lift I had been battling for, without success, for the previous four years.

The connection with the local authority also brought me into contact with my local carers support group – The Carers Trust Cambridgeshire – and I have been acting as a volunteer and advocate for them ever since, as well as a range of other organisations, such as Carers UK and C4CC.

It is my own experiences that have made me so passionate about spreading the word that unpaid carers and their wider family have rights — now enshrined in the Care Act 2014.

As much as anything it’s about their legal right to have an assessment of their own, independent of the people they care for — so their needs can be evaluated — and support — such as respite breaks — provided.

Sheila died last April and in memory of her I am determined that we spread the word that not only that support is out there, but how rewarding it is to volunteer to help others find that extra help.

But there is still a long way to go in raising awareness. In my own county of Cambridgeshire there are an estimated 78,000 carers, but only 9,000 of them access any official support.

With an ageing population this is a problem that is not going to go away, but I’m proud of the work that we have done locally to address this situation.

All our GPs have signed up to a carers support scheme, so when a carer comes into their surgery — maybe just to pick up a prescription — their details are taken and emailed over to the Carers Trust, who in turn can signpost them to extra services and support.

This GP support is so important, not least because carers need regular health checks of their own because the rate of burnout among them is a real problem given the every day stresses that do not go away.

It was very different back in 1991 when I first went to my GP after Sheila had a nervous breakdown. I was supplied with the necessary medication, which came with strict instructions, but felt I had no real say in her ongoing treatment and care, or access to the sort of community support I was later to access, but almost by accident.

Despite changes of attitude, we still have a long way in ingraining the notion of co-production, championed by organisations such as C4CC and Carers UK, where carers and the patient have more say over their treatment and the services delivered to them.

But if we are able to achieve this, calling on all the resources that are available in communities, and yes, by people simply having the sort of conversations that changed my life for the better, then it will be well worth the effort.

In short, the three founding pillars of C4CC – Co-Production, Communities, Conversation – are the way forward in achieving better and more focused care for people with long term conditions and we all need to work together to make this happen.

Carers Rights Day is held every year by C4CC partner Carers UK and they want bring organisations together to help carers in their local community know their rights and find out how they can get the help and support they are entitled to. You can find out more in the Carers UK ‘Looking After Someone’ – a guide to carers rights.

If you are caring for someone at the moment and would like to find out more about your rights and how to get help, click here.


A Co-production Model: five values and seven steps to make this happen in reality

Catherine WiltonCo-production: a single-page guide, Catherine Wilton, Director Coalition for Collaborative Care 

Over the last few months, our co-production group have been working with others to produce a simple guide to help organisations embed co-production into their day-to-day working.  The ‘Co-production Model’ describes the values and steps needed to ensure the voices of people with lived experience are included in decision-making, from commissioning to co-design and co-delivery.

As one of our three Cs, co-production is an essential part of achieving a better deal for people with long-term conditions.  Co-production involves sharing power and recognising that people with `lived experience’ have a hugely important contribution to make in decisions about every aspect of healthcare and in creating the conditions for better health and wellbeing in communities.

The model is available now for everyone to access and we look forward to hearing your stories about how it is helping you to embed co-production into the work you do. Further materials and resources will soon be available, so watch this space. Click here to download and print the model.


Fiona CareyWhy We Need It, Fiona Carey, C4CC Co-chair 

Get your Co-production Model here!

Co-production – the best, if most elusive, version of ‘people involvement’ – is gaining ground as an idea. So it’s great news that C4CC has produced this Co-production Model. Even better, is that it’s on a single A4 page and that it is a model, too, of simplicity, sense and plain English. In a meagre 300-or-so words* it:

  • explains what co-production is,
  • describes five ‘values and behaviours’ that need to be present in an organisation to make co-production possible,
  • offers seven steps to implementation.

It has already been received with huge enthusiasm in several places where it’s been presented, which seems to reflect the reality of where we are with co-production. That is, that the argument ‘for’ has largely been won, but that people aren’t sure how to do it, or where to start.

The rightness of doing co-production

In fact, there is a growing acknowledgement that co-production is simply the right thing to do, both for people who use services and for their families. But it also makes operational sense. This is true for lots of reasons, but here are the three biggies (and some slogans!).

First, it’s better for patients to be actively involved in their care. People with long-term conditions are probably best-placed to know what services they want and need, and can contribute massively to their proper design and planning.

Slogan alert #1: Plan with us, not for us.

Second, you get better outcomes. Individually, patients will understand more, ‘comply’ more, and be healthier. Where systems and processes are designed with users, you’ll get to the right solution quicker, and with fewer iterations. Then once in place, the systems and services will work better, faster, and with fewer revisions.

Slogan alert #2: We know things you don’t know; we see things you don’t see.

Slogan alert #3: As ‘expert advisory groups’ go, if people who use services didn’t exist, you’d have to invent us.

Third, it’s better for health care professionals. Usually a bit scared and sceptical at first, the experience of the C4CC Co-production group, and hundreds of other ‘users’ working with professionals around the country, is that once professionals have co-produced properly, they are bitten by the bug, and become serious advocates of the methodology. Pathways work better, systems work, and job satisfaction goes up.

Slogan alert #4: Co-production helps us to prioritise and that’s better for us all.

How to do it and where to start

The interest shown in discussions about co-production, and early reactions to the Co-production Model, suggest that there is a huge number of professionals out there who really want to work using co-production, but aren’t sure how to go about it. (Although the oft-cited difficulty in ‘finding patients’, frankly seems a bit weird to me…)

Co-production is the easiest thing in the world to do badly, and really hard to get right. But the basic principles aren’t difficult, and the Co-production Model suggests a methodology that is simple and straightforward.

It’s a great place to start. And it’ll be followed soon with some case studies that will help further to address some of the practicalities.

The chances are you won’t get it right the first time, but don’t let that stop you!

Slogan alert #4: Don’t wait until the plan is perfect. Make a start, and fix it as you go along.

* Beaten into a cocked hat by the Gettysburg address, one of the finest examples of concise writing ever produced, at just 272 words. We did try.

Shahana RamsdenHow we created it, Shahana Ramsden, Senior Co-production Lead, C4CC

Before the first co-production model meeting I was influenced by two concepts extracted from different authors. The first was Susan Cain’s book, “Quiet; The power of introverts in a world that can´t stop talking” and the second was Time to Think: Listening to Ignite the Human Mind by Nancy Kline. Both authors remind us of the importance of creating an open and safe space in meetings so that every perspective is heard and valued.

We acknowledged that people have different learning and thinking styles so during our first meeting we gave everyone space to think about what co-production means to them and how to make it happen in reality. Each person had uninterrupted time to share their ideas so instead of a heated debate where people might forget to listen to other perspectives, we highlighted what everyone in the room agreed on. So by the end of the session we had a checklist of the common themes that the whole room believed in.

These discussions created the foundation of the Co-production Model.

We have been completely committed to modelling collaboration and co-production in the way that we have worked. Within the context of our precision-planned project spreadsheets where we set tight deadlines for delivery, we allowed the engagement to be slightly messy, releasing the energy of all our steering group members to carry the draft co-production model with them wherever they went – discussing the content of the model at meetings and events and gathering feedback about what changes were needed. Using this approach, we triggered multiple conversations about co-production in corridors, trains, coffee shops, patient groups, board meetings, team meetings, national conferences and regional events.

Within a three-month period we collectively had conversations about co-production with hundreds of people, including at notable events such as Fiona Carey’s presentation to the Q event and our popular workshops at the C4CC regional events for New Care Models sites.

During the later stages of development of the model, we were pleased to be led by our Young Health Ambassador, Alexandra Burroughes, supported by Justine Thompson, Macmillan Patient and Public Involvement Lead who facilitated a two-way session to ensure that we used plain English and kept communication clear.

As Christine will explain, now that the model is completed, we have started the process of developing practical tools and materials to show how co-production can work in practice in a range of different organisations.

Christine MorganWhat we plan to do next and how you can be involved, Christine Morgan, Co-production Group, C4CC

One of the great joys of being able to share the Co-production Model as we worked on it was that we had lots of feedback, as Shahana has described, which we used to amend and adjust the model.

People were getting stuck in and having a go even if it wasn’t perfect from day one and, indeed, why would it be? At the Vanguard events in Leeds and London we heard about different projects where people were working together to improve outcomes in health and care in many different organizations. People were very honest and shared their successes and the ‘not so good’ moments too, which often – and perhaps inevitably – provided the most learning.

Just remember FAIL – First Attempt In Learning (attributed to Dr. A P J Abdul Kalam).

Gathering case studies

To enable more people to hear about these projects, we are gathering case studies to give people some direct information about how this approach works, and to encourage more sharing so that many more people will be encouraged to work in a truly co-productive way.

We want to hear from you so that the case study collection can reflect what co-production can look like in commissioning, primary and community care, hospital trusts, Local Authorities, the Voluntary Sector and any other groups you are working with. Please contact Shahana at to share your experiences.

Capturing hearts and minds

One thread of feedback that was repeated many times was that senior leaders usually backed co-production, as a theory, but largely saw it as something their excellent communications people did. It is certainly true that a lot of expertise for the ‘how do we do this?’ question can come from communications experts but our model is about more than that.

Co-production and wanting – actually needing – to work with patients, carers and the public is a value and ‘must have’ that should underpin everyone’s way of working in any organisation that commits to it. That means the behaviour of the board, governing body or executive team should model co-production within the organisation and outside it. If that can be achieved then every team, department or  group within any organisation, or across systems, will know which parts of their work must be done co-productively, and while they might need some advice on the ‘how’ they will own their specific way of working.

So, calling all leaders – how co-productive are you and your organisation? Is co-production embedded in all that you do? Do you feel confident that the patient and carer voice is heard and informs all that you do in service improvement?

Diagnostic tool

Finally we want to be able to help you. Often a good place to start is to hold a mirror up to see where you are currently: ‘How co-productive or collaborative are you in your work?’ To help you to get the best for your organisation and the people it serves, we are planning on developing a diagnostic tool to help you to carry out a self-assessment. This will help you to see what you do well and where you want to make changes to work more co-productively.

As this work progresses, information will be published on the C4CC website – and of course if you already have a self-assessment or diagnostic tool that works well and are willing to share this,  please do get in touch.