Disabled activists have accused NHS England of “betrayal” after it went back on its promise to publish a policy – developed with service-users – that would have put an end to a mental health scheme branded discriminatory, coercive and punitive.
Members of the StopSIM coalition said service-users would feel “anger, disappointment and fear” at NHS England’s decision to publish a pared-down letter rather than the full policy, and its failure to include an apology or a commitment to change.
The coalition had been working on the “rigorous and detailed” policy with NHS England for 15 months after its members exposed the dangers posed by the multi-agency Serenity Integrated Mentoring (SIM) scheme.
They say the failure to publish the document “means service-users will be left without access to a policy that could help protect them from SIM and SIM-like approaches”.
And they say it shows NHS England (NHSE) has “a greater interest in protecting their reputation than protecting service users’ lives”.
One member of the coalition said they had been left “physically sick” by NHSE’s actions after 15 months of tireless, unpaid work that had put their and their colleagues’ health – and lives – at risk.
They said on Twitter that they had lost the “hope of ever being heard no matter how hard we try”, and told NHSE that they did not “have any more words for the pain and hurt I’m feeling”.
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.
The coalition’s campaigning revealed the flaws in the “sinister” and “disturbing” scheme and persuaded NHSE to order local reviews of how it had been implemented by trusts across the country, seven years after it was first piloted on the Isle of Wight.
For the last 15 months, the coalition has been working with NHS England on a new policy document and had been expecting it to be published in full by 10 March.
But on Friday (10 March), Professor Tim Kendall, NHSE’s national clinical director for mental health, published only a short letter that had not been approved by the coalition, stripped the policy “down to the bare minimum”, and used the coalition’s words without its members’ consent.
Among the elements missing from the policy, said the coalition, was an acknowledgement from NHS England that its endorsement of SIM had caused harm to patients, an apology, and “commitments to make changes to prevent this from happening again”.
The coalition said it had been told that NHSE’s communications department had refused to sign off the new policy because it was “politically inconvenient”, despite it having been approved by NHSE’s legal team and chief executive.
The coalition also criticised the “obstinance and unprofessionalism” shown by the Academic Health Science Network – set up by NHSE to “spread innovation” and link the NHS with academic organisations, local authorities, the third sector and industry – which it said had supported and promoted the SIM scheme and disrupted the coalition’s role in developing the new policy.
The StopSIM coalition said in a statement: “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.”
SIM was first trialled in 2013 on the Isle of Wight, but was eventually rolled out to nearly half the mental health trusts in England, and had been 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 reviews carried out by NHS trusts into the use of SIM-type schemes 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”.
In Kendall’s 10 March letter, he says that SIM or similar models “must no longer be used in NHS mental health services”.
He says there must be an end to the involvement of police officers in delivering “therapeutic interventions in planned, non-emergency, community mental health care”.
And he says the use of coercion, sanctions, withholding care and other “punitive approaches” must also end, including making patients sign contracts about how they will behave or arresting or prosecuting them for regularly appearing at mental health services.
Kendall also demands the end of “discriminatory practices and attitudes” towards patients who express self-harm or suicidality or are seen as “high intensity users”, including labelling them “manipulative” and “attention seeking” or telling them they “have capacity to take their own life”.
NHSE refused this week to say why it had reneged on its promise to publish the policy; and whether it agreed with the concerns about AHSN’s actions.
It also refused to say if its actions would deter other service-user and survivor groups from working with NHSE, and if they showed its commitment to co-production was “nothing more than rhetoric”.
And it refused to say if the absence of a robust statement outlining the existence of SIM teams across England and the decisions which enabled SIM to be implemented showed “an egregious lack of transparency and accountability”.
NHSE has denied that its communications department refused to sign off the policy.
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.”
AHSN had not responded to questions about its actions by noon today (Thursday).
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