We call on NHS England to publish the joint StopSIM policy in full immediately

We call on NHS England to publish the joint StopSIM policy in full immediately. 

Over the past 15 months, we have worked with NHS England, as well as a range of other stakeholders, to produce a rigorous and detailed policy that supports many of the concerns highlighted by service users and activists during the StopSIM campaign. The letter from Tim Kendall  published on NHS England’s website on Friday 10th March is not the joint policy. The Coalition were not involved in writing this letter, nor did we approve its publication. This letter strips the policy we have written down to the bare minimum and in places uses our words, verbatim, in a way that we have not consented to. This letter is not the outcome that NHS England has been promising for the past year.

The policy we wrote with NHS England clearly defines SIM through identifiable practices that must be eliminated from use. It also includes an acknowledgement from NHS England that their endorsement of SIM has caused harm to patients, an apology for this, and commitments to make changes to prevent this from happening again. It also includes a commitment from the Care Quality Commission to consider how trusts are implementing changes the policy sets out whilst carrying out its inspections. While a number of senior NHS England staff have given strong support for the policy and pushed for its publication (alongside national mental health charities, professional bodies and service user organisations), we have been told that NHS England’s Communications office refused to  sign it off, describing the policy as “politically inconvenient”. 

We have also experienced ongoing obstinance and unprofessionalism from the Academic Health Science Network (AHSN) throughout our work. Despite claiming to be committed to co-production, the AHSN refused the Coalition access to key information that was shared with NHS England, were disruptive to our role in developing the policy, and plainly refused to speak with us or attend meetings where we were present. Barriers to publication created specifically by Wessex AHSN, are a significant part of the reason the policy has not been published. 

At the final stages of preparing the policy for publication, Wessex AHSN, who were instrumental in the promotion and spread of SIM, presented legal challenges blocking publication. Although NHS England has refused to provide us with details of the legal grounds Wessex AHSN used, we understand their challenges relate to the way the reviews were conducted and suggested the policy is insufficiently neutral, despite the policy clearly discussing the limitations of the reviews. It is important to note that this policy was also informed by wide stakeholder engagement, including hearing directly from service users. Throughout this process Wessex AHSN, led by Bill Gillespie, has acted in a way that  makes it clear that they are significantly invested in minimising reputational damage. The fact remains that Wessex AHSN endorsed and promoted SIM, describing it as “ready for national scaling”(1), despite having been informed by Hampshire Constabulary that SIM data was inaccurate(2). The harm this has caused patients is well evidenced. Our experience of Wessex AHSN leads us to believe that, despite their claims, this organisation is unable to support best practice and innovations that benefit patients, and is therefore not fit for purpose.

We share in the anger, disappointment and fear that service users will feel following this announcement. NHS England’s failure to publish this policy is a significant betrayal of the seen and unseen labour put into the development of this work and the campaign against SIM more broadly. Their decision not to acknowledge the harms that have resulted from their endorsement of SIM does not change the fact that these harms have happened, nor does it protect the institution from legal challenges that could be brought against them. NHS England had an opportunity with this work to change what happens in the future not just by writing new policy, but through setting an example for trusts to follow. They threw that opportunity away. Their decision indicates to service users, local trusts, commissioners and the wider public that no lessons have been learnt within NHS England since their endorsement of SIM. 

We had hoped this work would signify changes in ways of working within NHS England and indicate the possibilities of future improvements in the involvement of lived experience groups within the institution. However, failure to publish the final policy sets a precedent for undervaluing lived experience contributions and failing to follow through on commitments, as well as demonstrating total disregard for the labour of lived experience involvement. 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.

Despite the policy not being published, in January 2023 NHS England began instructing trusts to make changes that our policy identified as unsafe and unethical. These changes are: 

1. The police should never be involved in the delivery of therapeutic interventions in planned, non-emergency, community mental health care. (This does not apply to the provision of forensic mental health services or the existing obligations of the police under the Mental Health Act.) Police must not be actively or routinely involved in mental health services and mental health services must not use the threat of prosecution as a way of seeking to control someone’s behaviour.
2. The use of coercion, sanctions (criminal or otherwise), withholding care and otherwise punitive approaches must end. NHS England supports the assessment, now made by NICE, that punitive and aversive approaches in the treatment and prevention of self-harm amount to malpractice. Behavioural contracts with patients must also end. (This does not impact on the use of coercion under the Mental Health Act). 
3. Discriminatory practices and attitudes towards patients who engage in self-harm and suicidality and/or those who are deemed ‘high intensity users’ must end, such as telling patients they are free to or have capacity to take their own life, withholding pain relief when treating self-harm and using discriminatory language in patient notes. 

Unless the full policy is published and the public are able to scrutinise how trusts respond, we do not believe that all trusts will make the necessary changes outlined above. Indeed, since the reviews were ordered in May 2021, a number of trusts have claimed not to use SIM or the approaches above, when in fact they do. The absence of a robust statement outlining the existence of SIM teams across England and the decisions which enabled the implementation of SIM constitutes an egregious lack of transparency and accountability on the part of NHS England. Crucially, failure to publish leaves services users without access to a policy that could help protect them from SIM and SIM-like approaches, and without acknowledgement of the harm that’s been caused to them. NHS England’s assessment of our policy as “politically inconvenient” sends a clear message about their priorities, not only to people who have been and still are being harmed by SIM, but also the families of those who have lost their lives under SIM and to the wider service user community. NHS England have a greater interest in protecting their reputation than protecting service users’ lives. 

We have made the decision not to leak the unpublished policy at this time because we recognise that without NHS England’s endorsement, the policy lacks the authority to have a meaningful impact on service users’ experiences within services. Secondary to this, the Coalition agreed with NHS England that neither party would publish the policy without the consent of the other. We keep to our commitments. We strongly advise that NHS England do the same, and that they do not further co-opt our work and publish a ‘politically convenient’ version of our policy without our approval. We stand ready to change our decision if necessary.

This is not to say that we will quietly accept NHS England’s decision. This is not the end of our campaign. The response which NHS England has been promising for the past year is written. There is no good reason to withhold publication, which is in the interest of patient safety and the national interest. We call on NHS England to publish our joint policy immediately. 

We want to thank the wider mad/service user/survivor/activist community for your continued work in challenging the injustices and harms within the mental health system, both within SIM teams and beyond.

In Solidarity,

The StopSIM Coalition

1. Wessex Academic Health Science Network, ‘Wessex Academic Health Science Network Annual Review 2016-2017’, 2017. https://wessexahsn.org.uk/img/documents/Wessex%20Annual%20Review%20201617%20SPREADS_2017_06_20_10_31_20.pdf
2. StopSIM, ‘Findings from the Freedom of Information Request to Hampshire Constabulary’, 29 June 2021, <https://stopsim.co.uk/2021/06/29/findings-from-the-freedom-of-information-request-to-hampshire-constabulary/&gt;.https://www.google.com/url?q=https://stopsim.co.uk/2021/06/29/findings-from-the-freedom-of-information-request-to-hampshire-constabulary/&sa=D&source=docs&ust=1677928085975034&usg=AOvVaw1AWvjwSxNBC_0aa6c3UG16