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Long-term segregation and seclusion for people with an intellectual disability and/or autism in hospitals: critique of the current state of affairs

Published online by Cambridge University Press:  04 December 2024

Samuel J. Tromans
Affiliation:
SAPPHIRE Group, Department of Population Health Sciences, University of Leicester, UK; and Adult Learning Disability Service, Leicestershire Partnership NHS Trust, Leicester, UK
Indermeet Sawhney
Affiliation:
Learning Disability Services, Hertfordshire Partnership NHS Foundation Trust, Hatfield, UK
Mahesh Odiyoor
Affiliation:
Centre for Autism, Neuro-Developmental Disorders, and Intellectual Disability (CANDDID), Cheshire and Wirral Partnership NHS Foundation Trust, Chester, UK
Jana de Villiers
Affiliation:
High Secure Forensic Intellectual Disability Service for Scotland and Northern Ireland, The State Hospital, Lanark, UK
Jane McCarthy
Affiliation:
Learning Disability Service, Sussex Partnership NHS Foundation Trust, Worthing, UK
Harm Boer
Affiliation:
Psychiatry of Intellectual Disability Services, Coventry and Warwickshire Partnership NHS Trust, Coventry, UK
Regi Alexander
Affiliation:
Learning Disability Services, Hertfordshire Partnership NHS Foundation Trust, Hatfield, UK
Ken Courtenay
Affiliation:
Psychiatry of Intellectual Disability Services, Barnet, Enfield and Haringey Mental Health NHS Trust, London, UK
Stuart Wallace
Affiliation:
Legal Directorate, St Andrew's Healthcare, Nottingham, UK
Satheesh Gangadharan
Affiliation:
Adult Learning Disability Service, Leicestershire Partnership NHS Trust, Leicester, UK
Ashok Roy
Affiliation:
Psychiatry of Intellectual Disability Services, Coventry and Warwickshire Partnership NHS Trust, Coventry, UK
Amy Blake
Affiliation:
Psychiatry of Intellectual Disability Services, Coventry and Warwickshire Partnership NHS Trust, Coventry, UK
Kiran Purandare
Affiliation:
The Learning Disabilities Directorate, Central and Northwest London NHS Foundation Trust, London, UK
Anupama Iyer
Affiliation:
Learning Disability and Autism Division, St Andrew's Healthcare, Nottingham, UK; and Adult Learning Disability Service, Leicestershire Partnership NHS Trust, Leicester, UK
Richard Laugharne
Affiliation:
Cornwall Intellectual Disability Equitable Research (CIDER), Cornwall Partnership NHS Foundation Trust, Truro, UK; and CIDER, Peninsula School of Medicine, University of Plymouth, UK
Vivien Weisner
Affiliation:
Carer, Coventry, UK
Rohit Shankar*
Affiliation:
Cornwall Intellectual Disability Equitable Research (CIDER), Cornwall Partnership NHS Foundation Trust, Truro, UK; and CIDER, Peninsula School of Medicine, University of Plymouth, UK
*
Correspondence: Rohit Shankar. Email: [email protected]
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Abstract

In November 2023, the Department of Health and Social Care published guidance, entitled ‘Baroness Hollins’ Final Report: My Heart Breaks – Solitary Confinement in Hospital Has no Therapeutic Benefit for People with a Learning Disability and Autistic People’. The report's commendable analysis of the problems and identification of the areas where practice should be improved is unfortunately not matched by many of its recommendations, which appear to be contrary to evidence-based approaches. The concerns are wide-ranging, from the use of the term ‘solitary confinement’ for current long-term segregation (LTS) and seclusion, to presumption that all LTS and seclusion is bad, to holding clinicians (mainly psychiatrists) responsible for events beyond their locus of control. Importantly, there is a no guidance on how to practically deliver the recommendations in an evidence-based manner. This Feature critically appraises the report, to provide a comprehensive summary outlining potential positive impacts, identifying specific concerns and reflecting on best practice going forward.

Type
Feature
Copyright
Copyright © The Author(s), 2024. Published by Cambridge University Press on behalf of Royal College of Psychiatrists

In November 2023 the Department of Health and Social Care released a report on solitary confinement and people with intellectual disability (also known as learning disability in UK health services) and/or autism.1 As stated in the report, ‘the Independent Care (Education) and Treatment Review (IC(E)TR) programme reviewed the care and treatment of 191 people who were detained in long-term segregation between November 2019 and March 2023’.1 The report was developed following concerns about several informed findings from these reviews, including a lack of therapeutic benefit, iatrogenic harm, diagnostic overshadowing, trauma secondary to the hospital environment, and a lack of access to and involvement in care decisions from patients’ families/friends. The report's commendable analysis of the problems and identification of the areas where practice should be improved is unfortunately not matched by many of its recommendations, which appear to be contrary to evidence-based approaches. Table 1 provides a summary of the report's recommendations, with our analysis of their strengths and weaknesses.

Table 1 Summary analysis of the recommendations in Baroness Hollins’ final report

HOPE(S), Harness Opportunities Protective Enhance (System); LTS, long-term segregation; CQC, Care Quality Commission; ICB, integrated care board; ICS, integrated care system; DHSC, Department of Health and Social Care.

Premise of the report

The report's title labels long-term segregation (LTS) and seclusion as ‘solitary confinement’, a term generally used in prisons. The terminology is itself confusing as it is not defined in English law, but has made its appearance in various parliamentary committee meetings and government publications.

However, it is universally recognised that solitary confinement is inherently punitive. It indicates that the prisoner is being denied any active interaction/engagement with others, often because of a violent act. Although LTS and seclusion in healthcare settings is often initiated because of the threat of violence toward others, it does not preclude active engagement with staff. Patients under LTS may spend significant periods of the day with others, including healthcare professionals and family members, as well as accessing community opportunities (including hospitals and schools) through escorted leave (Appendix 1). The blanket assertion in the report summary, that all LTS and seclusion is solitary confinement that has no therapeutic benefit, is not evidence-based.

A systematic review on the use of seclusion and restraint in adult psychiatryReference Chieze, Hurst, Kaiser and Sentissi5 found a mixed picture among eligible studies. Fourteen studies reported negative effects of seclusion and restraint, four reported beneficial effects and 17 reported negative and beneficial effects. Unfortunately, there has been no similar research involving people with intellectual disability and/or autism, which is imperative for evidence-based policy.

Many people with intellectual disability and/or autism can find the presence of others in their living environment challenging. In such situations, it is the absence of appropriate community health and social services that results in their admission to hospitals.Reference Shankar4 Once that happens, what in the community could be labelled as single-person accommodation becomes LTS in a hospital setting. It is also worth recognising that people with intellectual disabilities are often expected to live in group settings, which may not be conducive to their behavioural/mental health. This is in contrast to the general population, where the choice to live alone is increasing.Reference Lennard, Sharpe, Goodey, Hudson and Shankar2 To equate the need for solitude within a busy ward environment, while living alongside peers that one has not chosen, to solitary confinement, is not representative or equal.Reference Shankar4 These nuances have not been captured in the report.

Definitions for LTS/seclusion and solitary confinement are provided in Table 2. The report summary, as well as Recommendation 9 in the main report, recommends that all instances of enforced social isolation, including LTS/seclusion, should be renamed ‘solitary confinement’. In practice, the widely accepted definition of what solitary confinement constitutes is derived from the United Nations Standard Minimum Rules for the Treatment of Prisoners (the Nelson Mandela Rules) (Table 2).6 This is markedly different from the experience of people with intellectual disability and/or autism in LTS/seclusion, where contact with healthcare professionals is regular, and any segregation usually relates more to isolation from fellow patients rather than human contact more generally. These are governed by clear policies and legal frameworks from supporting hospitals, and monitored internally and externally.

Table 2 Definitions for key terms

The report rightly recognises the aetiological role of trauma in hospital admission, with further LTS/seclusion being potentially traumatic interventions in themselves. However, there is little evidence for the assertion that ‘trauma is usually at the root of the exclusions that eventually lead to hospital admission, and for too many people, to solitary confinement’.

There is good evidence of the bi-directional relationship of trauma and mental illness, and in many instances the role of the illness itself cannot be excluded; thus, LTS/seclusion should not be seen solely in isolation through the prism of trauma. It is worth pointing out that many other forms of restrictive practices exist to manage high-risk incidents, such as physical restraint, mechanical restraint and rapid tranquillisation, all of which can in theory predispose, precipitate or perpetuate trauma. Indeed, evidence from the adult psychiatry systematic reviewReference Chieze, Hurst, Kaiser and Sentissi5 suggests that seclusion appears to be better accepted when compared with other coercive measures, such as forced medication and restraint. All of these interventions are balanced on risk analysis principles of affording immediate safety to the distressed individual and others. An understanding of the balance between short-term risk management and the longer-term harm in trauma perpetuation is needed, and a research call on this would have been welcome.

Various factors are considered when LTS/seclusion is used to manage extremely aggressive behaviour that poses a risk to others, including staff and fellow vulnerable patients. The Mental Health Act (MHA) Code of Practice definition7 states that if a patient's constant feature is a sustained risk of harm posed to others, then they should not mix freely with other patients on the ward/unit on a long-term basis. If the risk to others is not ameliorated by other forms of treatment, including short periods in designated places of safety on the unit under seclusion policy, other patients or staff might be vulnerable to potentially serious injury or harm. Furthermore, if such incidents were to occur, this could compromise the chances of the patient being offered a service by community care providers and achieving suitable discharge from hospital.

The Nuffield Trust reported that in 2022, ‘2.1% of [NHS staff] respondents in mental health and learning disability Trusts said they had experienced violence from patients and the public more than 10 times in the past 12 months’.8 Although not directly related to LTS and seclusion issues, this raises concerns about other vulnerable patients and staff safety. Violence toward staff and other patients could put the treating clinicians in breach of the Code of Practice. Hence, the utilisation of LTS in these situations to manage potential risks is a difficult and nuanced clinical decision made by the multidisciplinary team.

If the report's recommendations (Table 1) were implemented, it raises concerns of the management of patients who present with severely aggressive behaviour when LTS and seclusion are not available options to manage risk. Perversely, this could lead to increased likelihood of using other restrictive practices such as restraint, psychotropic medication prescribing or even forsensication.Reference McCarthy and Duff9

The assertion that LTS and/or seclusion has no therapeutic benefit for people with intellectual disability and/or autism might not be true for all cases. For example, some patients have sensory integration difficultiesReference Robertson and Baron-Cohen10 and the low-stimulus environment provided through LTS/seclusion can provide necessary and therapeutic reduction in sensory stimulation during intense distress (Appendix 1). It is anecdotally recognised in clinical circles that certain patients do escalate their behaviour to achieve the sensory reprieve/solitude afforded by LTS, and sabotage efforts of reintegration – especially as current mainstream psychiatric units are poorly equipped for these needs.Reference Jones, Gangadharan, Brigham, Smith and Shankar3 Further evidence is required to assert specific harms of LTS/seclusion.

Specifics of the report

Report Recommendation 3 states that ‘clinicians should be held accountable when they fail to follow these good practice guidelines’, without being clear as to how the clinicians would be held accountable and what the potential consequences would be. The report subsequently cites an example of such a failing being ‘found to have used punitive measures such as the withholding of section 17 Mental Health Act 1983 leave’. This statement implies that withholding Section 17 leave could be done with punitive intent. However, in clinical practice, Section 17 leave decisions should be made in accordance to the MHA Code of Practice,7 with full discussion and input from the multidisciplinary team. It is part of the robust treatment and risk management plan that has independent oversight. Any divergence from the MHA Code of Practice can be challenged at the level of the individual case in the already well-established clinical–legal framework. It is disappointing that the report appears to claim professional misconduct without basis by practicing clinicians. Professionals remain accountable with professional regulatory bodies, and if there are concerns about misconduct in an individual case, there should be a referral made to the relevant regulatory body. Additionally, in the case of patients detained under sections within Part 3 of the MHA (the forensic sections), it may be the Ministry of Justice who are effectively withholding permission to grant Section 17 leave.

The report also proposes that clinicians should be held accountable for ‘failure to develop a clinical environment that does not rely on enforced isolation in solitary confinement’. First, the need for seclusion or LTS may not be a consequence of the clinical environment. Indeed, the risks that led to isolation may have preceded their hospital admission. Second, admission to hospital may be the result of placement breakdown in the community (for example, because of physical and/or sexual aggression11), or the lack of suitable community care. Furthermore, although the responsibility to create the therapeutic environments is a collective responsibility of clinicians, organisations and integrated health and social care systems, it depends fundamentally on the actions of funders who commission services in the community and hospitals. This statement in the report carries the risk of scapegoating clinicians for issues that are outside their locus of control. It invariably would discourage clinicians from working within hospital settings, leading to a loss of clinical expertise and worse outcomes for an already vulnerable patient group.

Recommendation 4 refers to a ‘redress scheme’ for everyone placed in seclusion or LTS. The Cambridge Dictionary12 defines redress as ‘to put right a wrong or give payment for a wrong that has been done’. Such a scheme heavily implies that any patient being placed in LTS or seclusion has been wronged in some way, despite healthcare professionals undertaking such practice to keep the patient and others safe. Furthermore, although a decision to place a patient in LTS/seclusion should never be taken lightly, both treatment approaches are legislatively codified,7 particularly to address the needs of high-risk patients with complex needs, where there are often no easy interventional options.

Recommendation 5 states that ‘solitary confinement for people with learning disabilities and/or autistic people should become “never events” for children and young people under 18 years of age, where it does not meet the minimum standards for adults, and when it lasts longer than 15 days’. NHS England defines never events as ‘serious incidents that are entirely preventable because guidance or safety recommendations providing strong systemic protective barriers are available at a national level and should have been implemented by all healthcare providers’.13 We would suggest that LTS and seclusion are not entirely preventable, and there are circumstances where the risk to the patient and those around them are far greater if these approaches are not used in a timely manner. Additionally, the rationale for a young person being placed in LTS and seclusion being a never event and this not being the case for adults appears to be ideological rather than evidence based.

Recommendation 8 states that ‘family members and advocates should be able to visit those in solitary confinement at any time of day or night if they consider it necessary, in the environment in which they are living.’ In principle this is a reasonable expectation. However, some caveats need to be considered. First, this should be subject to the wishes of the patient themselves, with their wishes respected, provided the patient has capacity in relation to this specific decision. Second, this could place an unrealistic demand on services to comply, and could be profoundly disruptive for fellow patients and possibly to the individual themselves. Furthermore, it fails to recognise circumstances whereby the patient being seen by their family may not be in their best interests, such as where they have difficult relationships with their family, where the patient themselves may not want family visits, and in secure settings where there may be a policy in place for family visits to take place outside the patient area to protect both patients and families.

Recommendation 13 states that ‘anyone who has been in solitary confinement should be monitored for 2 years following discharge from hospital to ensure changes are sustainable and they are receiving good community support.’ It is our view that all patients should be monitored regularly after discharge and their care package tailored to their current circumstances. Although those on LTS/seclusion would be more vulnerable, the suggested duration of monitoring post-discharge is arbitrary. An additional concern we have is that commissioners may expect the person to have lower support needs after 2 years, leading potentially to a reduced package of care and subsequent risk of deterioration in their mental health, well-being and corresponding risks. Bespoke placements may also result in patients living on their own, effectively continuing to live in the conditions of LTS/seclusion but without the same safeguards in place within in-patient settings. Often, where people are managed well in the community post-discharge, it is because they have individualised packages of care specific to their needs.14,Reference Niven, Gamman, Webb, Goodey and Shankar15

Other related aspects

It is unclear how the membership of the oversight panel was derived. It would be reasonable to expect the membership to be drawn from various professional stakeholder bodies, with a significant proportion being currently practicing expert clinicians, particularly psychiatrists from across the UK, to give relevant insight and perspectives to current practical challenges and conundrums on this issue.

Rates of behavioural incidents and risk scores for people with intellectual disabilities are higher than those without intellectual disabilities in psychiatric in-patient units.Reference Chester, Völlm, Tromans, Kapugama and Alexander16 It is interesting to note that this is not the result of this population being unfairly treated. Research has shown that those people with intellectual disabilities with similar offence histories and higher risk levels are, at present, being diverted away from the criminal justice system, with resultant shorter lengths of stay.Reference Chester, Völlm, Tromans, Kapugama and Alexander16 It is unclear how the proposed changes could affect these trends.

There is also a lack of acknowledgement of the challenges faced by healthcare professionals working with some people with intellectual disability and/or autism in in-patient settings, and the physical and psychological injuries sustained by them when supporting patients with complex needs.Reference Ee, Stenfert Kroese and Rose17 LTS and seclusion also needs to be seen in the context of rising staff injuries, poor staff retention and increasing need acuity of patients.

The voices and preferences of people with intellectual disability and/or autism themselves does not appear to feature prominently in the report. A case report on a patient ‘Mr Wonderful’ is discussed, but the detail is scant, with the report authors writing that ‘there is a long story about what happened to get Mr Wonderful back into his home and community but what is important is that he was a person who was thought to be ‘too difficult’ to live in his community and the opposite was proved to be the case’. An individual case report does not represent the diversity of experiences of the concerned group (see Appendix 1 for an alternative case study perspective). However, context is critical, and further insights of the ‘long story about what happened’ would have been useful when considering effective approaches of transitioning successfully to a community setting.

The report additionally relies on individual cases with respect to the healthcare professionals experience, where one senior psychiatry trainee reported not having examples of effective admissions (Report Annex B). Clearly one trainee's experience is not necessarily representative, and it is unclear how many other psychiatrists were interviewed and if a suitable research methodology was followed to gain an unbiased view. There is strong evidence in literature of what good in-patient care looks like for people with intellectual disability and/or autism.Reference Abraham, Purandare, McCabe, Wijeratne, Eggleston and Oak18,Reference Burrows, Page, Plugaru, Kent, Odiyoor and Jaydeokar19 It is another matter that there has been a focused, sustained, but poorly evidenced push toward closing specialist in-patient intellectual disability beds despite contrary evidence.Reference Shankar4 Further, there has been ongoing debate in England and Wales for the reform of the MHA for people with intellectual disability and/or autism, which also has potential unintended consequences.Reference Tromans, Robinson, Gabrielsson, Bassett, Sawhney and Triantafyllopoulou20,Reference Tromans, Bhui, Sawhney, Odiyoor, Courtenay and Roy21 There are also ongoing concerns of complex and vulnerable individuals needing to be discharged from hospitals being placed inappropriately outside of their local area because of a lack of suitable services in their home neighbourhood.Reference Shankar, Olotu, Axby, Hargreaves and Devapriam22,Reference Shankar, Jones, Devapriam and Roy23 Given the complexity of this vulnerable population, they would be at higher risk to be moved from hospital settings to community without due consideration of their long-term best interest.

It is worth noting that geographic issues, nature of hospital settings, patient characteristics, staffing levels and many other features would be potential confounding variables to the report's recommendations. It would have helped if the report had balanced the available evidence and these key associated areas with its findings.

Reflections on how to improve the current state of affairs

Baroness Hollins’ report is emotive, as it appeals to people's values. As clinicians, we are driven by our values, which are supportive of upholding the human rights of our patients. We acknowledge that LTS and seclusion represent an infringement of specific human rights. However, there needs to be an accurate representation of positively managing the balance of human rights infringements against clinical benefits and risk of harm.

LTS and seclusion are used only in extreme circumstances for a tiny proportion of in-patients. The measures are heavily monitored, and the aim is to minimise its use if it is unavoidable because of the risk of imminent harm to the patient and others in the vicinity.

LTS and seclusion needs to be viewed in context with other restrictive interventions, as it is often used to reduce use of restraint/physical/chemical intervention for the patient.24 Restraint is the riskiest of all restrictive interventions, with risk of severe physical health consequences, including death.24 Seclusion and LTS is the response to the most severe behaviours, and if seclusion or LTS is not implemented, the patient or others could be at exceptionally high risk.24

In the cases of both LTS and seclusion, we need to better understand the characteristics and needs of patients that are subject to these restrictive practices, including whether such practices are consistent with the patient's own preferences (e.g. for some patients, withdrawal of staff during seclusion may be helpful for them, whereas others may find this highly distressing).24 Such patient preferences could be documented in advance statements, in addition to recognising that restrictive practices will represent just one component of a multifaceted care plan.24

High-quality support should be available in such circumstances, including appropriately experienced and trained staff, facilities should be appropriate, access to television, occupational therapy and leisure activities, etc. Evidence-based tools such as the Health of the Nation Outcome Scales for People with Learning Disabilities should be considered to guide the management plan.Reference Abraham, Purandare, McCabe, Wijeratne, Eggleston and Oak18,Reference Painter, Adams, Ingham, James, Majid and Roy25 Clinicians need to be supported to provide the best possible care to those requiring specialist clinical settings and engage their valuable experience to help inform service planning for the future. Ensuring best practice requires consideration of research evidence, patient and carer perspectives and the clinical experience of those working in specialist settings.

We would welcome robust research to help delineate the role of LTS and seclusion in clinical practice, including comparisons of the relative merits and risks of alternative approaches. A possible model might be to look at the studies reviewed by Chieze et alReference Lennard, Sharpe, Goodey, Hudson and Shankar2 and see if any could be modified suitably to examine people with intellectual disability and/or autism.

Although a report into LTS and seclusion involving people with intellectual disability and/or autism is welcome, we have serious reservations regarding the methodology used to derive the report findings and the subsequent recommendations. Implementing the recommendations within the report might cause harm to vulnerable patients and their families, who we serve, and may have a significant detrimental impact on clinical services.

Our care of this most vulnerable group in society should be underpinned by evidence-based medicine and not ideologically driven opinion. In the USA, an ideologically driven policy to close mental health asylums, where abuses had occurred, was not matched by alternative, evidence-based community care. The consequences are now being seen, with chronic neglect of the severely mentally ill and more people with mental illness being in prisons than in psychiatric hospitals.Reference Torrey, Zdanowicz, Kennard, Lamb, Eslinger and Biasotti26 We cannot let that happen to people with intellectual disability and/or autism in the UK. The answer to poor institutional care is not to denigrate clinicians, who mainly would be psychiatrists or necessarily to close institutions. It is to establish a balance of good community care, good institutional care when necessary, inspect and scrutinise both rigorously, and base all care on a research-led, evidence-based approach.

Acknowledgements

We thank Dr Elspeth Bradley for offering insights into the role of trauma.

Author contributions

R.S. and S.J.T. led on the design and drafting, editing and revision of the manuscript. I.S., M.O., J.d.V., J.M., H.B., R.A., K.C., A.R., K.P., A.I., and R.L. all contributed significantly to the manuscript in the form of their written views on the corresponding report. S.W. provided legal expertise relating to the report, and V.W. provided a carer narrative. All authors provided final approval for the manuscript and all agree to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work is appropriately investigated and resolved. All authors satisfy the ICMJE guidance by substantially contributing to the design, analysis and interpretation of the work, drafting of the manuscript, final approval of the manuscript and all agree to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work is appropriately investigated and resolved.

Funding

The authors received no specific funding for this work.

Declaration of interest

All authors (except for S.W. and V.W.) are Members and/or Fellows of the Royal College of Psychiatrists (RCPsych). They are also part of the RCPsych Faculty of Psychiatry of Intellectual Disability. I.S., M.O. and R.S. are current Office Bearers in the RCPsych Faculty of Psychiatry of Intellectual Disability. S.J.T., J.d.V., J.M., H.B., K.C., A.R., A.B. and A.I. are currently on the Executive Committee of the RCPsych Faculty of Psychiatry of Intellectual Disability. K.P. and A.I. are the RCPsych College Centre for Quality Improvement (CCQI) leads for intellectual disability. R.S. is the RCPsych Associate Dean for academic training. The authors assert that this feature in no manner reflects the views of the RCPsych as an organisation. Further, R.A. is a member of the British Journal of Psychiatry Editorial Board, but did not take part in the review or decision-making process of this paper. S.J.T. has institutional grants from various national and charity organisations outside of the submitted work. R.S. has received institutional and research support from LivaNova, UCB, Eisai, Veriton Pharma, Bial, Angelini, UnEEG, Neuronostics and Jazz/GW Pharma outside of the submitted work. He holds institutional grants from funding bodies all outside of this work.

Appendix 1

A counter-narrative case study of LTS written by our co-author (expert by experience), the mother of a person with intellectual disabilities, is shared with her consent and has been anonymised.

‘My heart breaks’! How many times did I feel this incredibly strong emotion, when coming out of endless meetings called to discuss the future of my daughter. I always knew that there could be hope for her, given the correct support. Experts through experience would advocate a fuller life for her – clubs, cinema, frequent outings – to broaden her horizons. They could not see that their expectation of life is not necessarily right for every single member of our community. Some need much less in order to be happy. My daughter is now middle aged. She has been in residential care since late childhood. She suffers from a rare syndrome. She has an intellectual disability. She can be violent, will self-harm, is incredibly difficult to work with and requires expert care. She can also be great company and has a wonderful sense of humour. She moved from residential school into residential care. She has absconded, been arrested on more than one occasion, called the emergency services and was constantly at loggerheads with her fellow residents. Over the years, she has moved from one residential setting to another. She was medicated frequently, and rarely got on with her peers. In recent years she would try to find quiet areas where she could do her ‘work’ away from others. It was obvious that she preferred her own company. Her possessions were stolen or damaged, and this would result in frequent meltdowns, often resulting in restraint, forced isolation and strong medication. She would always gravitate to staff – especially male staff. She would form crushes on them, become jealous and highly resent the time they spent with fellow residents, and the whole spiral would begin again. She eventually found herself sectioned under the Mental Health Act. She has spent the past decade or so going in and out of hospital. Occasional providers were identified and tried, but her needs were so great that she would return to hospital. My recommendations on caring for her (i.e. in her own space) were rarely heeded. Every new provider ‘knew better’. Finally, on her return to a specialist intellectual disability hospital 2 years ago, where she was away from the other patients to begin with, it was decided to leave her in her own space – with support. She had spent a short time there some months before and they had seen the difficulty she had on the ward. A programme of activities was planned. She has access to an advocate, a tutor, and does cooking and art regularly. She has community access provided, and I visit and take her out once a month. She is looked after by an experienced, lovely team of female staff. There are obviously a few interactions with men, but they are not her regular carers. The change in her is dramatic. She is calmer, can concentrate on her activities for longer and is so happy in herself. She is good company and has a fantastic rapport with her staff. This is not to say she is ‘cured ‘of her difficulties. That will never happen. They still emerge. They are managed by a team who understand her well.

I fully support her LTS living arrangement. It is what suits her and brings out the best in her. For such an arrangement to be called ‘solitary confinement’ is harsh and cruel. It shows little understanding of the different needs of people. LTS is not for everyone, but for those few whose lives have been changed for the better, it is something to always be considered, as it can have real and special benefits. I realise that I do not spend every day worrying anymore.

References

Baroness Hollins. Baroness Hollins’ Final Report: My Heart Breaks – Solitary Confinement in Hospital Has no Therapeutic Benefit for People with a Learning Disability and Autistic People. Department of Health and Social Care, 2023 (https://www.gov.uk/government/publications/independent-care-education-and-treatment-reviews-final-report-2023/baroness-hollins-final-report-my-heart-breaks-solitary-confinement-in-hospital-has-no-therapeutic-benefit-for-people-with-a-learning-disability-an).Google Scholar
Lennard, S, Sharpe, R, Goodey, R, Hudson, S, Shankar, R. Creating capable communities for people with intellectual disabilities: challenges and opportunities. J Ment Health Res Intellect Disabil 2020; 13(3): 174200.CrossRefGoogle Scholar
Jones, K, Gangadharan, S, Brigham, P, Smith, E, Shankar, R. Current practice and adaptations being made for people with autism admitted to in-patient psychiatric services across the UK. BJPsych Open 2021; 7(3): e102.CrossRefGoogle ScholarPubMed
Shankar, R. Commentary on “why am I still in hospital? Evaluation of delayed discharges from two learning disability assessment and treatment units in England”. Tizard Learn Disabil Rev 2022; 28(6): 54–9.CrossRefGoogle Scholar
Chieze, M, Hurst, S, Kaiser, S, Sentissi, O. Effects of seclusion and restraint in adult psychiatry: a systematic review. Front Psychiatry 2019; 10: 491.CrossRefGoogle ScholarPubMed
United Nations Office on Drugs and Crime. The United Nations Standard Minimum Rules for the Treatment of Prisoners (The Nelson Mandela Rules). United Nations Office on Drugs and Crime, 2015 (https://www.unodc.org/documents/justice-and-prison-reform/Nelson_Mandela_Rules-E-ebook.pdf).Google Scholar
Department of Health. Mental Health Act 1983: Code of Practice. The Stationery Office, 2015 (https://assets.publishing.service.gov.uk/media/5a80a774e5274a2e87dbb0f0/MHA_Code_of_Practice.PDF).Google Scholar
Nuffield Trust. Violence in the NHS. Nuffield Trust, 2023 (https://www.nuffieldtrust.org.uk/resource/violence-in-the-nhs).Google Scholar
McCarthy, J, Duff, M. Services for adults with intellectual disability in Aotearoa New Zealand. BJPsych Int 2019; 16: 71–3.CrossRefGoogle ScholarPubMed
Robertson, CE, Baron-Cohen, S. Sensory perception in autism. Nat Rev Neurosci 2017; 18: 671–84.CrossRefGoogle ScholarPubMed
Scottish Government. Coming Home: A Report on Out-of-Area Placements and Delayed Discharge for People with Learning Disabilities and Complex Needs. Scottish Government, 2018 (https://www.gov.scot/binaries/content/documents/govscot/publications/research-and-analysis/2018/11/coming-home-complex-care-needs-out-area-placements-report-2018/documents/00543272-pdf/00543272-pdf/govscot%3Adocument/00543272.pdf).Google Scholar
Cambridge Dictionary. Redress. Cambridge University Press, 2024 (https://dictionary.cambridge.org/dictionary/english/redress#google_vignette).Google Scholar
Care Quality Commission. Out of Sight – Who Cares?. Care Quality Commission, 2020 (https://www.cqc.org.uk/sites/default/files/20201218_rssreview_report.pdf).Google Scholar
Niven, A, Gamman, L, Webb, A, Goodey, R, Shankar, R. Transforming care in Cornwall: a review of the quality of the lives of people with learning disabilities a decade post-discharge from hospital. Br J Learn Disabil 2020; 48: 315–22.CrossRefGoogle Scholar
Chester, V, Völlm, B, Tromans, S, Kapugama, C, Alexander, RT. Long-stay patients with and without intellectual disability in forensic psychiatric settings: comparison of characteristics and needs. BJPsych Open 2018; 4(4): 226–34.CrossRefGoogle ScholarPubMed
Ee, J, Stenfert Kroese, B, Rose, J. Experiences of mental health professionals providing services to adults with intellectual disabilities and mental health problems: a systematic review and meta-synthesis of qualitative research studies. J Intellect Disabil 2022; 26: 758–81.CrossRefGoogle ScholarPubMed
Abraham, J, Purandare, K, McCabe, J, Wijeratne, A, Eggleston, E, Oak, K, et al. An 8-year study of admissions and discharges to a specialist intellectual disability inpatient unit. J Appl Res Intellect Disabil 2022; 35(2): 569–76.CrossRefGoogle ScholarPubMed
Burrows, L, Page, G, Plugaru, E, Kent, B, Odiyoor, M, Jaydeokar, S, et al. Ideal models of good inpatient care for adults with intellectual disability: lessons from England. Int J Soc Psychiatry 2023; 69(4): 814–22.CrossRefGoogle ScholarPubMed
Tromans, S, Robinson, G, Gabrielsson, A, Bassett, P, Sawhney, I, Triantafyllopoulou, P, et al. The views of psychiatrists on proposed changes to the England and Wales Mental Health Act 1983 legislation for people with intellectual disability: a national study. Int J Soc Psychiatry 2024; 70(2): 388401.CrossRefGoogle Scholar
Tromans, S, Bhui, K, Sawhney, I, Odiyoor, M, Courtenay, K, Roy, A, et al. The potential unintended consequences of Mental Health Act reforms in England and Wales on people with intellectual disability and/or autism. Br J Psychiatry 2023; 222(5): 188–90.CrossRefGoogle ScholarPubMed
Shankar, R, Olotu, V, Axby, S, Hargreaves, C, Devapriam, J. Managing clients placed far away from their communities. Learn Disabil Pract 2015; 18(1): 2934.CrossRefGoogle Scholar
Shankar, R, Jones, G, Devapriam, J, Roy, A. Successful transfers to out-of-area placements. Learn Disabil Pract 2015; 19(1): 1822.CrossRefGoogle Scholar
Royal College of Psychiatrists (RCPsych). Restrictive Interventions in Inpatient Intellectual Disability Services: How to Record, Monitor and Regulate. RCPsych College Report CR220. RCPsych, 2018 (https://www.rcpsych.ac.uk/docs/default-source/improving-care/better-mh-policy/college-reports/college-report-cr220.pdf?sfvrsn=c74ad0e4_2).Google Scholar
Painter, J, Adams, N, Ingham, B, James, M, Majid, M, Roy, A, et al. Review and update of the health of the nation outcome scales for people with learning disabilities (HoNOS-LD). Int J Social Psychiatry 2023; 69(7): 1807–13.CrossRefGoogle ScholarPubMed
Torrey, EF, Zdanowicz, MT, Kennard, AD, Lamb, R, Eslinger, DF, Biasotti, MC, et al. Treatment of Persons with Mental Illness in Prisons and Jails: A State Survey. Treatment Advocacy Center, 2014 (https://www.treatmentadvocacycenter.org/storage/documents/treatment-behind-bars/treatment-behind-bars.pdf).Google Scholar
Figure 0

Table 1 Summary analysis of the recommendations in Baroness Hollins’ final report

Figure 1

Table 2 Definitions for key terms

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