Re: Long-term segregation and seclusion for people with an intellectual disability and/or autism in hospitals: critique of the current state of affairs. A feature published in the British Journal of Psychiatry (2024).
We are extremely concerned at the content and tone of the above-mentioned paper written by Royal College of Psychiatry members and staff from the NHS. There is much to critique about the paper and a fuller academic response is being prepared.
Our immediate concerns, as some of the experts by experience who co-produced Baroness Hollins report ‘My Heart Breaks’, is at the apparent disregard for the voice of lived experience and lack of empathy for the experience of those who were the subject of Baroness Hollins’ thematic review and those who have experienced long term segregation.
The paper reads as a defence of poor practice and an attack on the work of the Oversight panel. It is worth remembering that the Panel was formed as an intervention developed and implemented by the Department of Health and Social Care and NHS England on behalf of the Secretary of State owing to several high-profile national scandals and clinical concerns highlighted around long-term segregation. The issues set out in the Oversight Panel’s report require professionals and professional bodies to collaborate and be open and reflective to solve and operationalise the issues we found.
The paper frequently cites a lack of evidence as its critique. However, the evidence from almost 200 clinical reviews, chaired almost entirely by psychiatrists who worked closely with independent multidisciplinary teams that included people with lived experience, is not only significant, it is substantial evidence. In contrast to this, the authors report anecdotal evidence from other areas of practice without providing any data or unbiased evidence or critical analysis for their own assertions.
The paper makes false assumptions about the involvement of those with lived experience (half the Oversight Panel had lived experience), the methodology used and involvement of professional bodies (it is noted that one of the authors was invited as a representative of the college to support the OP but only attended on a few occasions and another author chaired an ICETR/s and was involved in the work without declaring this). It criticises our report as being ‘emotive’ whilst it sets out its own defensive and arguably emotive argument referring to, “exceptionally high risk”, if this practice were not used. It demonstrates a concerning lack of understanding of the issues we set out in our report – notably the impact of the phenomenon of enforced isolation which is minimised throughout the paper, based on their opinion.
Investing time in critiquing our work and defending poor practice instead of taking positive steps to remedy the problems highlighted in this government published report is a baffling response to such an important issue.
On the phenomenon of enforced isolation and evidence of harm
The term solitary confinement is a term attributed to the phenomenon of ‘enforced isolation from meaningful human contact’. Its longstanding negative connotations have spawned several seemingly less pejorative alternative descriptors including seclusion and LTS whose working definitions describe practices attributable to the phenomenon of enforced isolation. In addition to the OP findings, emergent (so far unpublished) HOPE(S) data has found that ‘enforced isolation’ (or whatever term we want to call this phenomenon ) accurately portrays the negative, punishing experiences and psychological and physiological reactions to isolation by autistic people and people with learning disabilities. This is in addition to findings from ICETRs that informed the Oversight Panel’s report and decades long research consistently reporting its harm (found in the Appendices of the OP Report).
Beyond the phenomenon
We can argue over language and terminology, but this does not change the reality of the inappropriate and/or poor services that lead to autistic people and people with learning disabilities being isolated every day. Many, many safeguarding alerts were instigated following the ICETR process and psychiatrists presided over most of the Panels. Citing a ´lack of evidence´ to the harms of such practice and to mount a defence on this basis seems to miss the point completely.
For professionals that hold so much power in the lives of the people experiencing long term segregation, this response to Baroness Hollins’ report feels like medical gaslighting of one of the most vulnerable groups in society. Understanding autistic cognition is central to understanding how to communicate with and support autistic people well. A focus on terminology rather than the phenomenon itself obfuscates the reality of the situation and is not only confusing, but potentially harmful and distracting from the consistent themes that were identified by the work of the panel. We were therefore further disappointed by the sensory and social benefit myths perpetuated in the BJPsych paper about ‘therapeutic side-effects’ of LTS. Research has shown that it is the right sensory/social input that is therapeutic which of course need not be found in enforced isolation. In addition, the authors descriptions of long-term segregation were (sadly) consistently not found in the independent reviews, hence the wide-ranging recommendations for system change.
The counter narrative (appendix 1) in this paper sets out an arrangement that is about person centred practice and what we fight for people with learning disabilities, autistic people and their families daily. It is disingenuous at best to suggest that we are arguing against that. It shows a worrying level of ignorance from the authors regarding the difference between long term segregation (where access to meaningful human contact is constrained) and being supported in one’s own space (where a person has choice and control about who enters their space and is free to access a range of external activities and relationships).
We ask the authors to reflect on their power as psychiatrists, and in particular the power they hold to marginalise certain groups of people. Would it be acceptable to attack the experience and language of any other marginalised group in this way?
Julie Newcombe & Alicia Wood
Members of the Oversight Panel for Long Term Segregation & Rightful Lives