NHS England has been warned that its actions could “plunge co-production into crisis”, after it went back on a promise to publish a mental health policy that disabled campaigners had been working on for 15 months.
Grassroots groups and disabled activists spoke out this week after the decision of NHS England to prevent the release of a document drawn up with detailed input from members of the StopSIM coalition, who had worked “tirelessly” – without payment – on the policy.
The coalition had been working on the “rigorous and detailed” policy with NHS England (NHSE) after exposing the dangers posed by the multi-agency Serenity Integrated Mentoring (SIM) scheme.
But last Friday, Professor Tim Kendall (pictured), NHSE’s national clinical director for mental health, published only a short letter that had not been approved by the coalition and which stripped the policy “down to the bare minimum” and used the coalition’s words without its members’ consent (see separate story).
Now StopSIM and other campaigners have expressed their frustration at the “betrayal” and have warned that it could have serious consequences for co-production across the mental health sector, particularly within the NHS.
The StopSIM coalition said: “Our experience with NHS England shows that their commitment to ‘co-production’ and embedding experiential knowledge is nothing more than rhetoric.
“Indeed, this will have a ripple effect on wider lived experience involvement in deterring other service user/survivor groups from seeking to work with NHS England at all levels.”
The grassroots, user-led mental health group Recovery in the Bin (RITB) said NHSE’s move was “the final nail in the coffin” for any confidence that NHS positivity towards co-production “was anything more than virtue-signalling rhetoric”.
An RITB spokesperson said there were “serious ethical and safeguarding concerns around the continued promotion of co-production in the NHS until there are better processes in place to make sure patients aren’t pouring their heart and soul into tokenistic activities that will block any real change and facilitate continuation of the status quo.
“Insincere ‘co-production’ and involvement is profoundly damaging to patients’ mental health and heart-breaking on a personal level, creating disillusionment and loss of hope, not just in the NHS but in society.”
They said that seeing a campaign with the profile of StopSIM “get screwed over so publicly” was “crushing”.
They added: “It may not have such a big effect on people new to involvement but for those of us who have been doing it for a while, seeing what’s happened even when there’s such support for the cause and so much public scrutiny is deeply discouraging.
“On the upside, it makes me more confident that activism outside the NHS is the right way forward.”
Dr Jay Watts, a disabled activist and consultant clinical psychologist, said NHS England’s “sudden reversal of its commitment to publish the full StopSIM statement” was “a ticking time bomb that threatens to plunge co-production both nationally and locally into crisis”.
She said: “Building trust is crucial in the early stages of co-production because patients and activist groups often have valid reasons to be cautious about professionals’ commitment to shared work.
“Far too often, decision-making has been taken out of their hands, whether it’s in individual care or systemic decision-making that claims to value their opinions.”
She said professionals had “appeared to be making genuine progress in making co-production something more than just lip service, thanks to the hard work, at considerable cost, of countless survivors who had shown the game-changing benefits of truly learning from patient expertise and innovation.
“The principles of co-production had begun to be enshrined in national policy, at trust board levels, and were even being spearheaded by NHSE themselves.
“The decision not to publish the co-authored statement puts this progress in real jeopardy.”
She questioned how patient groups could trust they were not being “used” for political purposes “if genuine joint work can be pulled by the powers that be, in this case after 15 months of shared working.
“Acts of genuine collaboration linger long in the hearts and minds of activist groups, betrayal longer still.
“It’s crucial that NHS England realise the potential domino effects of their decision, and make a U-turn, publishing the full co-authored #StopSIM statement.”
Akiko Hart, chief executive of The National Survivor User Network (NSUN), also expressed concern at NHSE’s actions.
She said: “NSUN is deeply disappointed by NHS England’s failure to publish this policy after 15 months of intensive labour from service-users and allies.
“This betrayal contributes to an already heavy history of mismanaged initiatives which co-opt or erase survivor and service-user work.
“We call on NHS England to urgently rethink this decision or risk embedding further distrust in the system and co-production work.”
NHS England’s decision also appears to have left some NHS executives bemused.
Bobby Pratap, former deputy head of mental health for NHS England and still working within the NHS, said on Twitter that he did not know why the policy had not been published but he believed it was “the most genuinely coproduced work” he had seen in 16 years of national policy, and that it had “rare” near-universal support from stakeholders.
NHSE refused to say why it had reneged on its promise to publish the policy; whether its actions would deter other service-user and survivor groups from working with NHSE; and whether its actions showed its commitment to co-production was “nothing more than rhetoric”.
But an NHSE spokesperson said in a statement: “NHS England has taken this matter very seriously and is grateful to the StopSIM coalition for initially highlighting concerns about the SIM model and for giving them a platform via their campaign.
“Following the local reviews, engagement, and review of the evidence it is NHS England’s position that SIM or similar models must no longer be used in NHS mental health services.
“While mental health services will continue to work in partnership with the police where appropriate, any approach that seeks to punish or withhold care from patients who are experiencing distress is deeply unethical.”
SIM-type schemes focus on users of mental health services – often those at high risk of suicide and self-harm – who have not committed a crime but are seen as “high intensity users” of emergency services.
SIM was eventually rolled out to nearly half the mental health trusts in England, and was backed by NHS England and recognised with national awards.
But an increasing number of disabled activists began to warn that it was based on coercion and denial of potentially life-saving support and was causing some service-users to live in fear of arrest or prosecution when they were in mental health crisis.
Documents obtained by Disability News Service revealed last September that those reviews raised multiple concerns about its use, and showed that many of the trusts had continued with practices that campaigners had described as “harmful” and “inappropriate”.
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