Over the last few days, I’ve been struggling to put my personal and professional objections to the SIM Programme into words. I’ve felt compelled to do something, but knowing what to do or say has been incredibly difficult. Words have evaded me, and anger and dismay have made me feel stuck. The question I have asked myself is, why can’t I just say “Peer Hub are concerned about the issues raised by the Stop SIM Coalition and join their calls for immediate review of the programme”?
The answer is: it just doesn’t feel like enough.
I share in the frustration and pain of the people who have raised this and come together to make their voices heard. I share in the absolute disbelief that this has not only passed through local governance, but national governance too. And not just quietly, but with media attention, awards and years of funding.
I share in the fevered anger that a police service that promises to protect vulnerable people and a health service committed to compassion, respect and dignity have been able to set aside these values throughout the decision making on the SIM programme. And most importantly, that this has been done at the expense of other options, and with acclaim for its ‘successes’, and with approval of its questionable ethics.
The Problem of False Values Statements
When a company or organisation makes statements about their company values, there is an expectation from staff, customers/ service users and the wider public that these values will run through every decision made in that organisation. We trust that leaders in those organisations will live, breathe, sleep and eat these values. I have come to learn that a values statement does not make those values true, just because it’s written on a website or agreed in a boardroom. When an organisation claims to hold values, but then does not act by them, it is felt as a deep betrayal of trust by its staff, it ‘customers’ and the wider public.[i]
“The biggest danger is when an organisation makes an effort to communicate their values but its own Leadership team ignore them and act in an entirely opposite way.”
Andy Portsmouth (2019)[ii]
Betrayal is what happens when a values statement turns out to be a façade, and betrayal is an acute and painful experience. These false values statements can be unintentional, made through the ambitious hopes by leadership teams that if they declare the company values so, then thus they will be. Or they can be deliberately misleading to collect on the disposable income of consumers seeking ethical products to buy, or to deceive funding providers seeking ethical programmes for their grants.
Regardless of whether false statements are made with good intentions or are deliberately fraudulent, the result is the same: people feel betrayed, people lose trust and people stop wanting to engage with the organisation[iii]. And particularly, when an organisation insists ‘but these are our values’ and consistently does not behave in line with them, their added corporate gaslighting raises responses of fury and resentment. And so, in a commercial market, where a consumer or workforce can choose for themselves and vote with their feet, false values statements can be the beginning of the end for businesses big and small, old and new.
The Betrayal of the SIM Programme…
When false values statements come from police and mental health services, service users can’t vote with their feet. This is a ‘monopolised’ sector. Police and NHS services are the only options for the public in emergencies. And with that, they also hold powers of detention under law, the ability to use force for compliance, and legal processes that hold exemptions to the protection of human rights.
They can make people subject to their service whether they like it or not, whether it comes from the organisation’s declared value base or not.
When it comes to showing objection to initiatives like the SIM programme, this isn’t a case of just boycotting an organisation that has made a bad choice or has questionable leadership. The NHS and police are the social safety net, the only statutory option for emergency help; and can utilise powers of entry to service users’ homes, bodies and minds. False statements of values and corporate gaslighting is without doubt going to drive absolute despair, visceral anger and a feeling of helplessness from the community against which these statutory powers are, or could be, executed.
Screenshot from NHS England and Improvement’s Website[iv]
It is this visceral response that has erupted with regard to the SIM programme, when NHS England says “everyone counts” when they roll out a national initiative which sanctions police officers to force people out of services; or profess values of compassion, respect and dignity when women with a diagnosis of personality disorder (who the SIM programme literature acknowledges are likely to have been subject to interpersonal violence or abuse[v]), are subject to withdrawal of care and support from staff who echo the words of abusers:
“They may not thank you for it, but inside they know exactly what they needed”.
Comment from a staff member providing feedback on SIM[vi]
Evidence and Ethics
The Stop Sim Coalition rightly raises the issues of evidence and ethics for SIM as a concern, in a system which advocates for evidence-based, ethical practice. We support their call for review of this programme, which they have comprehensively researched and their statement can be found here.
Peer Hub CIC supports the StopSIM Coalition in raising these issues, and we also ask more broadly:
Why, with a national agenda citing reducing restrictive practice as a primary aim[vii], are initiatives promoting force and coercion receiving national investment?
And why is this happening in a broader operating environment where never-coercive, never-forceful, always-person-centred user-led and community-based VCSE organisations are struggling for funding or having their funding cut[viii] regardless of how well they evidence their approach?
And it’s not just the SIM programme that is a betrayal of values in mental health care and research; unfortunately it is still common for research into new mental health treatments to pursue harmful or high-risk treatments and/or for professionals in psychiatric care to cling with deference to harmful treatments of old, such as:
The CALMED Trial, where inpatients diagnosed with borderline personality disorder were entered into a clinical trial to medicate them with Clozapine, an antipsychotic with 4 black box warnings issued by the FDA including severe and fatal side effects.[ix]
The PACE trial, conducted by a team of mental health professionals for people with ME/CFS, that has met with significant criticism for failing to deliver consistent clinical outcomes, making patients worse and administering CBT in a way that blames the patient for their illness[x]. Despite extensive campaigning from patients, clinicians, researchers and patient advocacy groups, the PACE research team continues to defend their intervention[xi] and the approach remains a recommended treatment in NICE guidance[xii].
The Royal College of Psychiatrists neglecting to effectively regulate electro-convulsive therapy while continuing to advocate for it to be administered involuntarily as ‘necessary treatment’, despite significant concern about its lack of efficacy and serious side effects from ex-patients, clinicians and academics.[xiii]
And as an extension of the above, the approval under NICE guidance for Vagus Nerve Stimulation Implants for the treatment of ‘treatment resistant’ depression. This procedure claims to be based on the therapeutic effects of ECT, but NICE states it has limited indications of effectiveness and there are significant concerns about harmful side effects from the early studies that informed the guidelines[xiv]. Nevertheless, NICE “encourages”[xv] clinical trials into the use of this experimental procedure that surgically implants a device into a patient’s chest to send electric impulses to the brain via the Vagus nerve.
And, of course, the fact that it took decades of campaigning across clinical disciplines, patient advocates, journalism and academia until finally in 2020, NICE and the Royal College of Psychiatrists changed their position to confirm there can be dangerous withdrawal effects caused by ceasing anti-depressant medication. Still, as yet, there is no official guidance for prescribers to follow on the safe withdrawal from anti-depressant medication, or any indication that this will lead to a review of the risks of withdrawal from other psychiatric medications, such as antipsychotics or mood stabilisers. [xvi]
When groups of survivors, patients, clinicians and researchers say “actually, folks, this isn’t great and we don’t want it”, why can’t the people behind these initiatives just say, “Ok, lets not do it then”? Particularly when researchers often find evidence that, when it comes to treatments with harmful side effects, many people will recover without any ‘treatment’[xvii], placebo groups can do very well without the treatment[xviii], treatment groups often show no long term benefit after the treatment ends compared to the control groups[xix] and forcing involuntary treatment has no measurable benefits at all[xx].
Whether reckless or intentional, the continued development of harmful medical procedures or treatments that can be administered by force feels awfully sinister. It's uncomfortable to think of the amount of funding behind things like surgical trials for 'remote, mobile ECT' (vagus nerve stimulation implants), when a cuppa and a chat with someone who cares would probably do.
And, with that, it feels to me that the SIM programme is a social intervention of that ilk: that the effects of the initiative on the person is of little consequence, the focus being meeting the needs of the system:
“I dislike her less now”
“She no longer phones me 40 times a day”
“I don’t dread coming to work any more”
“Suddenly we become the good cop”
Comments from staff providing feedback on SIM[xxi]
Who are mental health services serving?
My worry is that the search for the ‘magic bullet’ to solve the problem of difficult people is setting values and ethics aside, and allowing recklessness to the collateral damage to 'disliked' or ‘resistant’ patients.
Meanwhile, there is evidence that compassionate and creative approaches from psychotherapy[xxii], arts therapy[xxiii], music therapy[xxiv] and peer support[xxv] provided in trusting, safe, collaborative relationships can have transformative effects for patients experiencing distress[xxvi]. There is also evidence that these types of approaches can be fun and enjoyable.[xxvii][xxviii] It would be nice to see investment in building the evidence base and extending the use of these kinds of options, which might expand the possibilities and creativity of community mental health care.
I hope we can aspire to a higher baseline in our search for better support for people who already experience exclusion and marginalisation than ‘technically the findings are statistically significant’, ‘technically it’s within the law’ and so ‘technically it’s treatment, not abuse’.
“They may not thank you for it, but inside they know exactly what they needed”
Can anti-stigma campaigns solve this?
Perhaps anti-stigma campaigns that move beyond “It’s OK not to be OK” could tackle the barriers to consensual care caused by deficit-based (there’s a problem with the person) explanations for mental health issues. If anti-stigma campaigns move towards presenting people as strong and surviving difficult circumstances, what could result may be a collective effort to move towards help that liberates rather than help that contains.
Meanwhile, the Royal College of Psychiatrists continues to argue that ‘mental illness is an illness like any other’ when challenged about controversial and/or harmful treatments, and often raise diabetes, cancer and heart disease as comparative examples[xxix]. But national advocacy groups aren’t challenging the value and efficacy of chemotherapy, open heart surgery or insulin treatments, are they? And when people suffering from these diseases say ‘no’ to their treatment, they’re not forcibly administered anyway – even though, in terms of curing their ‘disease’, these treatments have much better outcomes when there is a certain prognosis of death.
Mental health is not as an ‘illness like any other’: the prognosis of ‘mental disorders’ is always uncertain, and diagnoses and risk assessments are not reliable predictors of mortality[xxx]. Further, saying ‘no’ to treatment that may or may not help can be used as an indicator that what is then needed is increasing levels of coercive or involuntary treatment that may, or may not, help – but will almost certainly cause some form of harm.
It may well be that anti-stigma campaigns targeted at psychiatric patients being able to say ‘no’ to harmful treatments can move us closer to a place where “it's OK to not be OK” becomes true for all service users that seeks help.
I believe a collective effort towards investment, research and healthcare practice that pushes the boundaries of possibility for connectedness and liberation will revolutionise mental health care for service users, staff and leaders. Until then, this knot in my stomach that tightens when I read 'mental health treatment' will remain, and the words 'compassion', 'respect' and 'dignity' will be nothing more than words in a list on a website.
Links to source material: [i] https://hbr.org/2002/11/when-company-values-backfire [ii] https://www.linkedin.com/pulse/when-corporate-values-statements-backfire-andy-portsmouth/ [iii] https://hbr.org/2002/07/make-your-values-mean-something [iv] https://www.england.nhs.uk/2014/02/nhs-values-in-action/ [v] https://www.iow.gov.uk/azservices/documents/2880-04-PJ-PB-SIM-MENTORING.pdf [vi] https://www.iow.gov.uk/azservices/documents/2880-04-PJ-PB-SIM-MENTORING.pdf [vii] https://www.cqc.org.uk/sites/default/files/201701207b_restrictivepractice_resource.pdf [viii] https://www.nsun.org.uk/Handlers/Download.ashx?IDMF=07298c4c-3c0e-43c6-bfdd-633086112166 [ix] https://recoveryinthebin.org/2019/10/22/the-calmed-trial-a-black-box-warning/ [x] https://meassociation.org.uk/research/published-research/pace-trial-and-illness-management/ [xi] https://bmcpsychology.biomedcentral.com/articles/10.1186/s40359-019-0288-x [xii] https://www.nice.org.uk/guidance/cg53/chapter/Key-priorities-for-implementation [xiii]https://www.psychologytoday.com/intl/blog/psychiatry-through-the-looking-glass/202103/report-finds-monitoring-electroshock-treatment [xiv] https://www.nice.org.uk/guidance/ipg679/informationforpublic [xv] https://www.nice.org.uk/about/what-we-do/research-and-development/research-recommendations/IPG679/1 [xvi] https://www.psychologytoday.com/gb/blog/psychiatry-through-the-looking-glass/202010/withdrawal-antidepressants-review [xvii] https://www.madinamerica.com/2016/07/most-people-with-common-mental-disorders-get-better-without-treatment-study-finds/ [xviii] https://jamanetwork.com/journals/jamapsychiatry/article-abstract/2686050 [xix] https://www.madinamerica.com/wp-content/uploads/2014/03/HarrowJobePsychMedMarch2014.pdf [xx] https://www.madinamerica.com/2014/11/forced-outpatient-psychiatric-treatment-provides-benefits/ [xxi] https://www.iow.gov.uk/azservices/documents/2880-04-PJ-PB-SIM-MENTORING.pdf [xxii] https://www.researchgate.net/profile/Lambert-Michael/publication/232477357_Research_Summary_of_the_Therapeutic_Relationship_and_Psychotherapy_Outcome/links/02e7e52c18feecd3e0000000/Research-Summary-of-the-Therapeutic-Relationship-and-Psychotherapy-Outcome.pdf [xxiii] https://psychotraumanet.org/sites/default/files/documents/Schouten-the%20effectiveness%20of%20art%20therapy%20in%20the%20treatment%20of%20traumatized%20adults.pdf [xxiv] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4036702/ [xxv] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4984766/ [xxvi] https://link.springer.com/article/10.1186/1472-6963-8-92 [xxvii] https://positivepsychology.com/music-therapy-activities-tools/ [xxviii] https://intuitivecreativity.typepad.com/expressiveartinspirations/100-art-therapy-exercises.html [xxix] https://www.bbc.co.uk/news/uk-52900074 [xxx] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6296389/