The Elephant in the Room

Here Lorraine Gradwell looks at coproduction in relation to a very current setting, and considers how it may or may not have been demonstrated.

In the first of these blogs I offered three definitions of coproduction: for this particular blog it’s worth reproducing here the NHS definition –

“Co-production is one of four elements which define successful change. The additional elements are defined as subsidiarity, leadership and system alignment. It is clear that engagement of people who use services, carers, families and citizens needs to be a core element of all four change principles for genuine and sustainable change to be achieved . . . . . The new challenge for people involved in co-production is to build on the clear mandate provided by the government to create a whole systems change in the way that support is designed, planned, commissioned and delivered so that a greater proportion of decision-making processes are led by people who use services, carers and communities.” (my emphasis)

What has become apparent since we started this blog is that coproduction certainly means different things to different people: maybe this is one of the main challenges to those of us trying to promote and embed coproduction?

Our major aim in hosting this blog was to identify good practice, what does good coproduction look like? However, we can also learn lessons by looking at areas where coproduction may not have worked well, may not have been good, or may not even be present. To have a situation which starkly presents the two opposite ends of this spectrum is unusual, and it would be remiss of us to not highlight this.

The #JusticeforLB campaign came about following the death of Connor Sparrowhawk, a young man known as LB, or ‘Laughing Boy’ who had autism and epilepsy, in an assessment and treatment unit (ATU). This blog is not about the campaign per se, nor about the ATU events leading up to the campaign, although they all certainly merit examination; rather it is about coproduction – a stated national NHS practice – has it been used, and was it helpful, or not? It is about if, and how, people have worked together to achieve a mutually appropriate and satisfactory outcome.

It certainly appears that LB’s family have struggled, right back from the time he was admitted to the ATU, to be involved in decisions about his ‘care’. Communication was difficult, and appears to have broken down after LB died. His family challenged the ‘death by natural causes’ briefing that was issued by the Southern Health Trust the day after LB’s death, and communication between the parties subsequently went further downhill, straight into the arms of m’learned friends. There have been three independent inquiries, several Care Quality Commission (CQC) reports, and a full jury inquest. LB’s death has been deemed ‘preventable’. We are duty-bound to ask if coproduction has been a factor in the way matters have been handled throughout: and if not, then why not?

Coming in for criticism, for example, was the Trust’s internal governance and assurance processes. Also, the Mazars report – one of the independent inquiries – describes “…a lack of leadership, focus and sufficient time spent in the trust on carefully reporting and investigating unexpected deaths of mental health and learning disability service users”. Further critical comment was made about the trust’s ‘lack of transparency’ and the lack of involvement of families in investigations into the deaths of service users. Since the publication of these reports there has been criticism of a lack of appropriate response and action – surely a potential area for demonstratively cooperative coproduction.

By comparison the #JusticeforLB campaign appears to embody most coproduction features. Think Local Act Personal (TLAP) says:

“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 them all. It is built on the principle that those who use a service are best placed to help design it.”

What has been characteristic about the campaign is the way in which people have joined in and worked together with little formal organisation, as if the intent was enough to guarantee cooperation – and indeed it was. The campaign appears to welcome all voices and perspectives and has been conducted largely via social media with an, at times, uncomfortably high level of transparency. (Go on twitter, use the hashtag #JusticeforLB, and look for yourself).

Without any designated structure or ‘party line’ there has developed a kind of consensual and fluid leadership, an aim (or aims, perhaps) that was collectively supported by those who variously offered their time, skills, knowledge, resources – and indeed kindness and comfort to LB’s family where they could.

Of course, a group of like-minded people will find it easier to work collaboratively, whilst to change practice and culture in large organisations will always be a challenge. But that’s the point really: coproduction is a challenge for the NHS, but also a massive opportunity if only people will take it.

To repeat, this blog has not been about the rights and wrongs per se around the preventable death in care of a young man. It is about a classic ‘elephant in the room’. We need to talk with our partners – including NHS England – about coproduction, looking critically and analytically at the events described here. We need to identify, together, the lessons learned (or not) and decide how and where practices and cultures need to change. And then big decisions, big actions, big leadership, big consensus are needed. Tinkering round the edges won’t cut it.

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