Disabled activists end campaign after unveiling NHS England’s SIM scheme confession

A group of disabled activists has announced it is disbanding after more than two years of campaigning that has forced significant change to the way mental distress has been criminalised within the NHS.

The StopSIM Coalition is announcing today (Thursday) that its intensive campaign work has taken a “huge emotional toll” on its members and “significantly damaged” their health, making it “untenable” for them to continue with their work.

Its campaigning revealed the flaws in the Serenity Integrated Mentoring (SIM) scheme, which it helped expose as discriminatory, coercive and punitive, and persuaded NHS England (NHSE) to order local reviews by mental health trusts of how it had been implemented.

SIM-type schemes have focused on users of mental health services – often those at high risk of suicide and self-harm – who are seen as “high intensity users” of emergency services.

StopSIM’s work led to the closure of the network that was set up by a former police officer to promote the SIM programme, and the end of several SIM schemes.

It has also persuaded NHSE to admit it was wrong to endorse the SIM model without applying “sufficient scrutiny” to that decision, and that this “compromised the safety and quality of care” and had harmed service-users.

Its campaigning work has secured widespread support from other activists and disabled people’s grassroots groups, professional organisations, charities, and led to a petition signed by more than 64,000 supporters.

The coalition says “important steps” have been made in challenging the “violent, discriminatory and harmful practices” SIM promoted, including new NICE guidelines on self harm.

But it says this “falls short of the fundamental ‘culture shift’ urgently needed”.

And it warns that many mental health trusts are continuing to use elements of the SIM scheme in their programmes.

The coalition worked closely with NHSE for more than a year on a national response and policy position on how SIM and SIM-type schemes were being used across NHS mental health trusts, but NHSE went back on its word to publish it in full.

The coalition says NHSE had agreed to work on the principles of confidentiality and equal partnership, and that neither party would publish without the consent of the other.

But it says NHS breached all three principles.

Someone from NHSE leaked part of the draft policy to the Health Service Journal in February, and excluded StopSIM from key conversations with executives.

NHSE also “went back on its word” not to publish an altered version of the policy without the coalition’s consent when Professor Tim Kendall, its national clinical director for mental health, published a short letter in March 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.

The coalition believes that the publication of the full document was prevented by legal action taken by Wessex Academic Health Science Network (AHSN), one of several networks set up by NHSE in 2013 to “spread innovation at pace and scale” and to link the NHS with academic organisations, local authorities, the third sector and industry.

SIM was first trialled in 2013 on the Isle of Wight, but it was eventually rolled out to nearly half the mental health trusts in England.

Wessex AHSN continued to support the SIM scheme, despite being warned by Hampshire police in 2018 that dodgy data had been used to persuade other forces and health trusts to adopt the programme.

Activists, including members of the coalition, later began to warn that SIM was based on coercion and denial of potentially life-saving support and was causing some service-users to live in fear of arrest or even prosecution when they were in mental health crisis.

As a result of NHSE’s refusal to publish the document in full, the coalition is today publishing the version it was sent by NHSE in late December, which was described in an email from NHSE’s head of adult mental health as the “final version of the position statement”.

The StopSIM Coalition has decided to share the document with Disability News Service before releasing it publicly later today (Thursday).

In today’s statement, the coalition says: “We believe it is a matter of national importance that findings from the local reviews, which were brought about through service user activism and wider public campaigning, and NHS England’s response are not covered up.

“Although it has not been formally endorsed by NHS England, we urge individual Trusts to recognise the strength of support for this policy, among service users, stakeholders and professionals, and adopt this policy locally.

“The detail in this policy provides a level of clarity that is currently absent from the brief statement issued by Tim Kendall, as well as including recommendations about the care Trusts should now provide patients who have been under SIM or a similar model, and findings of the local reviews conducted in mid 2021.”

The coalition says it hopes campaigning against SIM and the criminalisation of distress will continue.

It says: “No one policy, nor one campaign, will be enough to weed out these harmful and abusive practices, which have been embedded within NHS mental health services for decades.

“We encourage all those who have capacity to continue resisting SIM and the criminalisation of distress by taking action locally and nationally, in whatever way you can.”

Wessex AHSN did not deny that it had taken legal steps to stop the publication of the policy.

But in a statement, it said: “The reason for the non-publication of NHS England’s report and the contents of it are matters for NHS England and it would be inappropriate for us to comment further.”

An NHSE spokesperson declined to say if the legal action taken by Wessex AHSN had prevented the policy being published.

But the spokesperson said in a statement: “We are extremely grateful for the work of the StopSIM coalition, which has highlighted significant policy concerns and helped us mobilise to address them.

“We are clear that the SIM model should not have been extended and are committed to ensuring the practices of concern related to SIM and other similar models are no longer used.

“Although we have not been able to agree a joint position statement with the coalition, our review of SIM was based on the voice of lived experience, and we are strengthening our processes to ensure the voices of patients remain central to our future policy-making.”

In response, a StopSIM Coalition spokesperson said: “It is absolutely misleading to suggest NHSE and the coalition were ‘unable to agree’ on a position.

“The public can read the details of our joint position in the draft policy we’ve published.”

Picture: A mug made by a member of the coalition

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