Co-production is the key to Health and Social Care Integration

By Laura Able, SCIE Co-production Network member 

Laura Able 

Since the 1990s there was a general agreement between professionals, politicians and people who use services and their carers that an integrated, joined up, often called “seamless” service is needed to create the best health and social services for everyone.  People don’t usually mind who provides services; they just want good quality. 

Is this a Change in Name Only?

This year the Health Department became the Department of Health and Social Care but is this change in name only?  I want to suggest the barriers to this integration can only be eroded successfully, if co-production is intrinsic to the process at every level and this is the only way that services can truly integrate.  Put simply this because services exist because of the service user.  Therefore services need to revolve around the service user and not the other way round.  A co-productive process is not about reducing cost for systems it is about creating better one.

User and Carer Involvement

Ealing User Involvement Project where I worked in the 1990s sent representatives to all types of meetings where professionals discussed services and made decisions; strangely enough when we were included there did seem to be improvements in communication between the different agencies.  

The assumed theoretical background and often differences of approach and language had to be reconsidered when the user/carers were there this enabled everyone to talk to each other more openly.  Moreover, service users and carers often hold the establishment to account and challenge if for example, the viewpoint of people who are often not heard is neglected.  

Our Life Journey

Perhaps this is a rose tinted view of the past, there wasn’t true equality or power sharing but there were still some real benefits.  User involvement and co-production recognises that everyone has skills and assets; it demystifies professionalism and reinstates the fact that we will all need good quality services for some reason, at some point, in our lives.  To provide a truly integrated health and social care system, which follows our life journey, we must incorporate at every stage of development diverse groups of service users and carers to co–plan, co–design, co–commission and co-deliver services.

My history in self advocacy

By Brian Stocker, self-advocacy specialist 

I have been in the self-advocacy movement for many years and this started at Lambeth People First where I was working as a volunteer. I then started working with People First (Self Advocacy), on their Management Committee; this was in the early 90’s.   

Myself and a few others set up Hackney People First as a user led group and I got a job as a project worker, I was also part of the team that set up Sutton People First after speaking to the local council.  I then got a job as a project worker at Sutton People First.  After that I joined a team which set up Newham People First and I worked there as a project worker and later as a manager.  I worked there for 17 years starting in 1994. I retired from Newham People First in 2012.

My original role at People First Self Advocacy was as a member and I then I was on the Management Committee. I then stood down from the Management Committee and People First have employed me since September 2013. My new job title is Supporting Each Other Equals Power Project Co-ordinator. 

I have a lot of knowledge and experience of working with user led organisations and campaigning for the rights of people with learning difficulties.  Self-Advocacy has been a big part of my life and it will always be.  Without Support it is very hard for people with learning difficulties to get what they want let alone need, if you do not get the right support it affects your health and wellbeing, both physical and mental.  Often for someone who has a learning difficulty, it can be a fight to be heard and get the support that you need.  

To be able to give this kind of support in the Supporting Each Other Equals Power project makes me really proud, it is easy for me to understand the difficulties of not having support because of my real life experience. This is why it is such an amazing project, because people with learning difficulties who have the experience run it.  I have often been in the shoes of the people that we see and support.

Supporting Each Other Equals Power is a free peer support project being run in Lambeth which aims to deal with loneliness and people with learning difficulties being left out of society.  It also looks to make sure people have the peer support that they need to have control over all parts of their lives.  We support people in any area of their life to get the services they need.    

I am proud of my story and what I have achieved, there are a lot of people with learning difficulties who want to do the same thing and can do the same thing if they have the right support. My life has gone through four stages. It all started in a long start hospital in South Ockington.  From there I went into a group home and day centres, this was boring and I could not be who I was.  

Next, I moved to supported living and employment training which was much better, but I was treated different and separate from rest of society. Now I am an independent person who has control over my life.  I have a good life, a paid job which is a real career and my own place to call home. People with learning difficulties can achieve anything in their lives if they want to. They just need people to listen to them and give them the right sort of support. 

We are more than 'the blue bobbles'

By Samantha Johnson, who is an expert in many areas (See below)

About me 

I am a young black woman aged 41 with learning difficulties. I go to church every Sunday expect for when I am away with the church or weekends away on holiday. Every month on a Sunday I go out with a group of people called the blue bobbles.  The reason why we are called the bobbles is because of the blue bobbles on the tube map showing which stations are accessible. They are accessible for wheel chairs, and people with mobility needs.  The blue bobbles are a group of people with Spinabifida and Hydrocephalus, we go out to accessible places (blue bobbles), I think it is important for us to get know each other to share our experiences and support each other.

My history in self advocacy

My self-advocacy journey started in 1994. This was with speaking up and supporting people with learning difficulties to get the services they need.  Here are some examples of work I have done: 

• I am qualified to train people with learning difficulties to speak up 
• I helped set up a self-advocacy group called Safety Net People First in 2000, this was with Mencap’s director in Hammersmith and Fulham. I was also Co-Chair for Safety Net People First when it was first set up back in 2000
• I have Co-chaired Hammersmith and Fulham’s Partnership Board for people with learning difficulties to speak up so they can have their voices heard 
• I am also now one of the Trustees of Hammersmith and Fulham Mencap 
• I have done a lot of speaking up training with service users from ifferent London Boroughs as well as outside of London 
• I have worked with the DWP for a year as an administrations officer
• I was involved in making a film about GPs working with  service users in Hammersmith and Fulham
• I have co-chaired the Valuing People Partnership Board
• I have done training and given talks to doctors, nurses, reception staff at GP surgeries, medical professionals and psychologists around meeting the needs of people with learning difficulties   
• I have done a lot of work about getting the right type of housing for people with learning difficulties and given training to housing staff
• I have also done a lot of work around people with learning difficulties getting a personal budget or a heath budget so that they can make their own decision and choices
• I have been involved in the consultation that helped set up the Friends and Family App which asked how your doctor’s appointment was.

Why is Supporting Each Other Equals Power so important?

It is such an important project because it is helping people with learning difficulties to live independent lives with the right support.   For people with learning difficulties not getting the right support can be one of the biggest barriers in their life.  This project is also important because we support people to speak up for themselves and support those people who feel they do not have a voice to speak up or are not listened to.

It is all about “Nothing about us, without us” Often decisions are made for people with learning difficulties and our voices are not listened to.  This project is about having the peer support to have control over our lives.

Film-making and co-production barriers to overcome

By Sybil Ah-mane, Flexible Films 

In our line of work, we think it makes sense to co-produce all film projects. This means that clients have influence on the style, feel and main messages of the completed film. It also means they are proud of it and have real ownership. 

Whilst we have the film-making skills, our clients have the expertise and knowledge of their area so having meaningful involvement from them helps shape the project and enhance the process.

Sometimes, we come across barriers to co-production. This can happen when those leading the project are not entirely convinced of the benefits so it can start with attitudinal barriers. They may not prioritise what's needed in the planning stages and this can result in mixed messages. Poor communication can lead to trust being broken down and people feeling that they are not being heard. Not having enough time or resources can also affect the process. It's a shame when this does happen because working co-productively is not only satisfying but also logical. 

One of our best co-produced projects was when we facilitated a mental health filmmaking group for 11 years. CanDo Films was initially funded by Oxleas NHS Foundation Trust. We taught the group all aspects of filmmaking including directing,  interviewing, editing and filming. They produced lots of films and many of these were used for staff training and public information. Their knowledge of mental health services meant the films produced were insightful and innovative. 

The group received the Oxleas Recognition Award for Best Practice and were runners-up in the National Health and Social Care Awards in 2005. This illustrates how succesful working co-productively can be.

Unite with us against dementia. We get it and – together - we will do it, help people live better with dementia!

By Lindsey Ambrose, Dementia Voice Lead, Alzheimer's Society. 

Alzheimer’s Society recently had our first ever “Dementia Action Week” – a wonderful celebration of co-production and public involvement! A bright, credible and optimistic event demonstrating how, more and more, we are working together – united! - with people affected by dementia as active partners and consultants, wherever they are in their dementia journeys.

It’s a time of fantastic change, with great commitment to including people, sharing power, and learning from experts by lived experience in recruitment, training, campaigns, fundraising... In 2017, our bright, optimistic, branding was launched thanks to people affected by dementia across the UK. The voices of people affected by dementia decided our dementia statements – confident, clear, rights-based, expectations used in our ongoing campaigns work to Fix Dementia Care.

For Dementia Action Week 2018  Marketing & Communications colleagues shaped flagship communications and literature working in partnership with, and learning from, over 500 people affected by dementia across the country, finding out important small actions people take every day that make a big difference to living well with dementia.

We have ‘dementia voice’ opportunities all year including:

Our Research Network: around 270 volunteers who are former and current carers, and/or people living with dementia. No scientific knowledge or research experience required. They help researchers learn to talk to the rest of us about their work. They help decide what gets funded, monitor projects, and do lots more too, if they want! Interested in joining? We’d love to hear from you!

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    Want to join us? Please contact Jamie Tulloch email: ResearchNetwork@alzheimers.org.uk

Focus on Dementia Network: about 60 groups of people living with dementia, across England, Wales and N. Ireland. They work:

• with staff from Alzheimer’s Society: improving processes, products, publications,… ; and
• helping organisations – theatres, leisure centres, hospitals
• Network members have co-produced their service specification, resources for members, facilitators and people wanting to work with them. 

We also welcome volunteers to help us continue to build “dementia voice” into our work.

Want to join us? Please contact Kim Nguyen email: yoursay@alzheimers.org.uk.

How Early is Early?

By Kevin Minier. Independent carer.

Cost-effective co-production must ensure that we do the right things in the right way.

This means that the end-user of services must drive the need for change. We can no longer acquiesce and relinquish our responsibility to health and care managers.  Currently those managers can often determine what needs to change; and this might have to be based on the premise of short term finances. Under these circumstances, real change can be just too difficult. 

I believe this is because the authorities have limited influence and are only able to impact the services that they are directly responsible for. This means they are limited to dealing with symptoms and not the root problem.  What I also believe is that the end users and their carers are in a key position to highlight the root cause of the problems that they face. And we call this co-production.

Using co-production to contain costs

My proposal is that service user and carer groups are proactive in defining the root cause of system issues regarding integrated health and social care. Of course there is a need to contain costs and one way to do this is to work up proposals from lay people. This reduces the need to engage more expensive professionals, and it can also take them away from performing their desperately-needed duties. This is especially so if it means taking staff and clinicians from their front-line activities.

So, local patient and user groups can do things like: be proactive; get trained up in co-production facilitation; and create proposals for new integrated models of care. They can then get professionals, clinicians and other frontline staff to critique the proposals that they have come up with. These proposals, can, in turn, be presented to those ‘decision-makers’ and the proposals can be revised and given timescales so that they can be implemented.

It’s also important to create a co-production steering group of professionals and experts-by-experience to develop those things that can be delivered- and for them to monitor progress. Barriers and bottlenecks can be reviewed by all concerned.

Revolutionising models of care

I believe this process will facilitate programmes for change to address those root issues, thereby providing solutions that can revolutionise models of care rather than merely patching over symptoms. The latter adds cost to a process and rarely results in quality of care and customer satisfaction.

This process can surely be more cost-effective as it more effectively uses combined user / carer / professional /clinical resources when developing and implementing new integrated models of care.

Hammersmith and Fulham: leading the way with co-production

By Victoria Brignell. Member of Hammersmith and Fulham’s Disabled People’s Commission.

On June 20^th, Hammersmith and Fulham Disabled People’s Commission will officially launch its report calling for co-production in the way the council operates. If it’s implemented fully, it will have far-reaching consequences for how the council is run and how it delivers services to residents.

Entitled Nothing about Disabled People Without Disabled People, the report’s key aim is that disabled people should be actively involved in directing all aspects of the council’s work.

A cutting-edge initiative

The DPC was set up by the council in September 2016 and over the year that followed it carried out an extensive investigation into the experiences and views of local disabled people. Led by Tara Flood, who has been a disability rights activist for more than 20 years, the ten members of the DPC are all disabled and lived in Hammersmith and Fulham.

It was soon clear in the DPC’s research that not only do services need to be improved but local disabled people want to take part in making the decisions that affect their lives.

The way ahead

Now that the report has been published, the next stage, of course, is to put its recommendations into practice. No one is underestimating the scale of the challenge ahead. It could be argued that producing the report was the easy part. The real effort starts now.

What will undoubtedly help is that the report has the full backing of Steve Cowan, the council leader, and was approved unanimously by the council’s cabinet in December.

Disabled residents have already been closely involved in drawing up the plans for Hammersmith Town Hall’s refurbishment. More significantly, a implementation group is being established, made up of disabled residents and senior council officials, to drive forward the co-production agenda across the council.

Tara Flood comments: “Focusing on co-production was a risky move for the DPC, not because co-production is a bad idea – far from it – but because co-production has been much misunderstood. The DPC report recommendations set out all the strategic changes that need to be implemented by the council if real and lasting co-production is to become a reality. There is no doubt we’re doing ground-breaking things in Hammersmith and Fulham and it has been a privilege to be part of it.”

A trailblazer for other councils

Meanwhile, what’s becoming increasingly apparent is that councils elsewhere in London and beyond are starting to notice what’s happening in Hammersmith and Fulham. The pioneering changes underway in this West London borough are sending quiet ripples through local government.

The history of government is full of examples of reports which promise a great deal but deliver little. Members of Hammersmith and Fulham’s DPC hope that their report will be different and that co-production will soon be a reality in this part of the capital at least.