NHS England’s National Clinical Director for Long Term Conditions looks at what co-production means to the Long Term Conditions (LTC) Unit and how it is essential to supporting person-centred care, addressing such difficult issues as personalised care and support planning, information-sharing and workforce skills:

Prevention and management of long-term conditions is one of the greatest challenges facing the NHS and health and care systems in all developed countries.

The importance of long term conditions (LTC) care has been set out in the Five Year Forward View.

The LTC, Older People and End of Life Care programme is essential to support most of the priority areas including cancer, urgent care, information revolution, primary care and new care models, Right Care and emerging work on self-care.

Through developing clinical policy in these areas, the work of the LTC Unit on person-centred care contributes to and helps align this work so that it makes sense to frontline clinicians and commissioners.

So what’s so great about co-production, I hear you ask.

 Co-production is a way of working.  It’s about equal partnerships – services and organisations working together with patients, carers, families and service users to co-design care and support.

What’s great about co-production is that:

• Services will improve because we can focus on using lived experience rather than just data
• Everyone is equal
• You are likely to see new perspectives that you may not have expected
• It’s a productive and fun way of working and the outcomes are meaningful
• It’s a positive way of living NHS England’s values and behaviours

Co-production is built on the principle that the people who use a service are best placed to help design and improve it.

This principle is supported by the Five Year Forward View (FYFV) which recognises the vital contribution of people and communities in shaping services.  The FYFV describes a new relationship with patients and communities centred on engagement, prevention and empowering people to participate in the NHS as a social movement.  It also builds on the NHS Constitution pledge to work in partnership, and involve people in discussions about care planning.

Co-production is as important to the development of credible and relevant national policy and strategy as it is to local service design and delivery.

Co-production is a powerful way to tackle complicated or wicked issues that can’t be solved by an individual or even a single team working together.  This is particularly relevant in the case of LTCs.

People who manage co-existing or multiple LTCs tell us they often experience disjointed care that can disempower them by not putting them at the centre through person-centred care and support planning.

An example of how real life experience helped us to work on this is illustrated by the following case study:

Long Term Conditions Unit – a co-production approach to care and support planning

Context

Care and support planning (CSP) for long term conditions is a difficult area for health and care systems to tackle.  Although clinicians and commissioners have seen benefits from CSP, reliable large scale research evidence has been harder to obtain and implementation is variable.

What we did

Carers and experts with lived experience of managing their long term conditions worked with us to plan, co-chair and run a workshop on CSP.  Other people taking part were commissioners; partner agencies; the RCGP; the Health and Social Care Information Centre, and clinicians and colleagues from across NHS England.  The carers and experts talked to the group about the importance of CSP and co-production; we heard from commissioners about innovative practice, and we learnt more about resources recently published to support CSP by Think Local Act Personal, the RCGP and the Health and Social Care Information Centre.  We ended the day by identifying top priorities and actions for care and support planning, which included to:

1. Improve information sharing across individual, organisational and sector boundaries to share CSPs
2. Develop and disseminate a framework to support local action on CSP
3. Support and drive commissioning to deliver good CSP
4. Strengthen awareness of CSP and its benefits to patients, carers, health and care professionals as well as commissioners

What we learnt

This level of co-production provided us with a healthy reality check.  Bringing together people who are experts in their own care from the outset with NHS England and other partner organisations gave us a deeper understanding – we were gaining from meaningful and personal perspectives, all of which would not have been achieved without co-production. Participants told us they felt at ease with fully participating in discussions. They also found it gave them information and ideas they could take forward in their local roles on patient and carer representative groups. The outcome of this work provided us with good insight and information to develop actions for care and support planning, which can also be used to develop evidence of benefit and value.

Here is our starter for ten on top tips for successful co-production (there are lots of others!):

• Remember, we can’t get it right without the people who use our services. Think about who to involve and invite them to take part as early as possibly in the process.
• Before you start, think about how you are going to work together and what will make it a success. For example,  set up briefing calls, explain terminology and be sensitive to the perspectives and difficult experiences that people might bring.
• Work together to identify a clear purpose.
• Start small and build up to more ambitious projects – hand over the reins and let others lead (not just professionals). This can feel risky at first but if carefully planned can provide much better results.
• People like to share their experiences of care and service improvement, so allow time for this.
• Cut out the jargon and don’t use TLAs (three letter abbreviations) or any acronyms.
• Think about the practicalities such as lots of notice for meetings, accessibility, user-friendly venues, travel arrangements and costs etc.
• Many co-production members have carer responsibilities. The time they take out in reading papers, contributing to meetings and events can sometimes add day-to-day pressures for them.

And finally – provide feedback!  People put a lot of time and effort into getting involved – they want to know what difference their contribution is making.

• For further information please contact Erica Goodall at the Long Term Conditions Unit: erica.goodall@nhs.net