Patients and carers can be our service design consultants

Emerging practice tells us that, for ‘place-based’ health and care to be effective, it’s best to co-produce it with local communities. Tina Coldham, trustee at the Social Care Institute for Excellence (SCIE) and Ewan King, director of business development and delivery, SCIE, give their views:

Impersonal. Task-based. The ‘hotel model’. This rather gloomy picture can be painted about some care homes that provide dementia support.

But a short film and report on our website shows how staff in a care home in Swansea are challenging these assumptions. It’s a model of shared living that builds on the strengths and contributions of people living with dementia, their families and staff. It uses the values and practices of co-production.

This is co-production in a nutshell: It’s about using people who receive care, and their carers, as unique consultants when designing services and finding out what people really want. It joins professional experts with experts-by-experience to produce the best outcomes and experiences for those who receive care and support. There’s a guide about it on our site.

The Swansea example is of co-production taking place in one care service – and that has been far from easy to deliver. What would it entail to embrace co-production across a whole health economy?

Increasingly, this is what policy demands – in relation to the new NHS planning guidance and Better Care Fund plans. To work for whole communities, plans need to be ‘place-based’, reflecting the views of a broad range of organisations and stakeholders, but with the views of patients, service users, carers and citizens too.

In the past, visions for local service development – even those held in high regard at the beginning – have often collapsed because the public were never properly involved, at the right time, in shaping the way forward. Co-production, happening at the systems level, can help us avoid some of these problems.

There are places that are trying to deliver co-production on this scale, and we need to give them support and encouragement. It’s great to hear of co-production happening on the ground, one step at a time:

  • Stockton. A group of people, working with the Integrated Commissioning Programme are trying a new approach to care and support planning.
  • Lincoln. A brand new co-production group has just been formed and they’re meeting up for the first time shortly.
  • Birmingham. They have established citizen-led quality boards. One looks at assessment and support planning services.
  • Somerset. Community conversations, workshops and user involvement share a vision for integrated, personalised, and preventative care.

So there are emerging examples of co-production delivered at the strategic level, across whole systems and communities. But there are not as many as there should be. One purpose of a new programme the Health Foundation is funding us to deliver, on the role of community wide, citizen-led constructive conversations and New Models of Care, is to unearth more examples of good practice. And more importantly, to identify what practical steps can be taken to ensure that people are meaningfully involved in decisions about whole system change.

The examples in places like Somerset, Swansea and elsewhere, show what can be achieved when initiatives like the one on place-based health and care are put into practice.

We at SCIE are keen to champion the role of co-production, not just in how it can potentially play out, but also by showing how it is already doing so. That way people’s outcomes and experiences can be improved. That’s the point of policy initiatives, after all, isn’t it?

Photo of Ewan King

Ewan King joined SCIE in September 2014 and is responsible for ensuring the delivery of SCIE’s contracted work, attracting new commissions, and supporting co-production with people who use services and carers. Ewan has been Director of Business Development and Communications at the OPM Group, an employee owned research organisation and consultancy.

A social researcher and policy analyst by background, Ewan was previously Director of the research team at OPM and led several large scale national evaluations, policy development projects and research studies for organisations including NHS England, Communities and Local Government, Department for Education, Department of Health, CQC and numerous national charities.

Before joining OPM, Ewan worked as a researcher for the Rt Hon Tessa Jowell MP. Ewan is a Trustee of the Charity Penrose, which seeks to re-integrate ex-offenders and people with mental health conditions into society, and was educated at the London School of Economics and Warwick University.

Photo of Tina Coldham

Tina campaigns for a better understanding of mental health issues in society, and works to improve service provision. She describes herself as having enduring mental health problems, having used mental health services over many years.

Tina has worked in the voluntary sector, across disability, in academia, with regulators and governing bodies as a trainer, researcher and consultant. In 2001 Tina joined the Centre for Mental Health Services Development England (CMHSDE) at King’s College as a project coordinator, working on the successful national pilot to implement direct payments in mental health.

Since 2003, she has worked for the Health and Social Care Advisory Service (HASCAS) on various national projects including direct payments work, service reviews, independent investigations, and MARD – the review of user and carer involvement in NIMHE (CSIP). Tina also chairs the SCIE co-production network.

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  1. Bernd Sass says:

    We apply an approach called user-driven commissioning (UDC), which we have found to be far more impactful than typical consultations or sporadic consultancy-based co-design.This brings together disabled people (and the way we live our lives) and the NHS and social care systems (and the way services are bought/provided). Local people lead on and bring the approach to life, as members of a ‘Lived Experience Team’ (6-10 members). We often agree an upfront commitment given by the NHS or the council to the power the team will have, eg 20% in the pathway or decision on a winning service provider. The team starts by discussing risk and protective factors in feeling good, including about themselves. Next current services and support experiences and pathways are explored, building on what peers have fed back and other relevant information. Then team sets out a vision of what an ideal landscape of services and support looks like and the roles they want support or services to play in their lives. Depending on the agreed purpose, the team will then be supported to face ‘outwards’ and trained up to meet providers, generate outcomes for contracting or indicators for pathways and/or ITT questions before co-assessing bids and co-conducting interviews.

    I’d like to think that UDC does deliver – provided commissioners and providers are up for real power-sharing.

  2. patrick graham says:

    Experience led services and/or design of services is not a new idea – the issue is working on those cultures and staff that effectively block such developments.

    Referring to people who reside in care facilities as “patients” is a symbol, but more than just that, of a medical approach to people as passive recipients of their expert care. It might be appropriate language among professionals looking at bed numbers – it is not the way we need to look at the people with the direct experience of “being badly done unto”, when that passive position is what we are trying to change.

    We still have the medical model dominantly in our thinking in all aspects of care, (“Compliant patient” anyone?)
    No doctor who has not been stuck in a bed in an arseless gown, told when and what they can eat, grasped how lights beyond one’s control can destroy sleep patterns, then alternately ignored and treated like a cross between a doll and a pin cushion – should be telling patients how they are improving their services to them…

    The same goes for all less dominant care facilities – the experience led organisations and people with skills who have been through each particular mill – are the expert consultants, not expert patients, – and the most lively resource for improving the service and the personal experience of that service for the benefit of all future “non compliant patients”.

    As a Senior manager in Social Care I sometimes despair at frontline failures but much more often get frustrated from trying to tear down the walls of career centric managers and the systems they have developed to detach from the personal reality of the service they are there to deliver.

  3. Pearl Baker says:

    As a Carer, and Independent Mental Health Advocate and Advisor I have put together my own Health and Social Care ‘package’ in effect I am a ‘Care Manager Co-ordinator. It is Not difficult. Carers are forced to look, listen, and learn from each other.

    My ‘package’ has saved the NHS thousands, provide better health and social care, however it will cost something in travel costs and for implementing ‘identified needs’ assessment, not implemented by the LA due to cost.

    Section 117 costs via ‘joint funding’ and a Personal Budget, will be negotiated by ME the ‘Care Manager Co-ordinator’, changes made over time.

    The Care Manager Co-ordinator’ ME will ensure ‘safeguarding’ issues, PB Section 117 are put in place, via a ‘patient centred’ assessment, emergency contact details, including ‘out of hours’ will be provided b y the LA.

    The costs involved will be substantially lower than if done ‘in house’ by other agencies so far ‘failing’ so many Mentally Ill living in the community.

    The patient ‘centred’ approach will evolve over time, as the patient and carers needs change, including PB.

  4. Nicola Kingston says:

    You might be interested in the work we have been doing with the Citizens Board in Southwark and Lambeth – we run a quarterly public meeting of the Citizens Forum.
    This is the report back of the meeting we held on Local Care Networks- a key component of integration:

  5. Pauline Mountain says:

    I would be very interested to connect with the ‘new’ co-production group in Lincoln, could you provide more details please?

    Lincoln. A brand new co-production group has just been formed and they’re meeting up for the first time shortly.