In 2012 I spent 9 months doing ethnographic research on 3 locked wards for women on an NHS secure unit for people with learning disabilities in England. People are detained in these units under the Mental Health Act if they have committed an offence, or if their behaviour is considered a risk to themselves or others, leading to a breakdown of a previous placement. The self-defined purpose of these units is treatment and rehabilitation, so I was alarmed to find seclusion rooms on each of the newly built wards, rooms which belonged to the dark past of institutionalisation. Seclusion continues to be a commonly used intervention in psychiatric and learning disability services. This is despite evidence that this practice is considered by service-users to be punitive, to hinder the development of relationships with staff, and even to be a violation of basic human rights (Fish, 2018; Gilburt, Rose, & Slade, 2008; Lawson, 2004). Research with people who had been secluded in psychiatric inpatient service report feeling anxiety, anger, sadness, abandonment, helplessness and fear (Meehan, Vermeer, & Windsor, 2000). However the views and experiences of those who have been secluded in learning disability services are scarce and largely unrecorded (Mérineau‐Côté & Morin, 2014). Considering the historical legacy of institutionalization of learning disabled people, a key aim of my work was to allow these women’s voices to be heard and to recommend changes to policy and practice.
The Mental Health Act Code of Practice defines the practice of seclusion as ‘the supervised confinement and isolation of a patient, away from other patients, in an area from which the patient is prevented from leaving’ – and specifies that it should be used for ‘the containment of severe behavioural disturbance which is likely to cause harm to others.’ Yet my participants told me that seclusion had been used for a range of reasons in the different services they had lived in, such as for observing women who were at risk of self-harming, and also for removing women who were disturbing others, as staff member, John* told me:
John: A lot of the time at night they put [name] in [seclusion room] at night, a lot, because all the other girls are in bed and she’s in seclusion and she probably doesn’t need to be in, but they’ve got to get her out of the flat for the sake of the other girls.
Furthermore, the Code of Practice sates that seclusion ‘should not be used as a punishment or a threat, or because of a shortage of staff. It should not form part of a treatment programme.’ However, reading The Tired Optimist’s blog (9th October 2016), it seems that services are not adhering to this requirement. The blog post, Inhuman Treatment describes a 30 year old autistic man’s treatment plan which includes the line ‘Time in the seclusion room to be used as a teaching on the importance of cooperating with the medication treatment’. The Tired Optimist perceives this as ‘punishing an individual for failing to comply with the organisation’s regime.’ If the surroundings are uncomfortable and the door is locked, then being in seclusion is surely going to feel like a punishment
The Code of Practice states that ‘while previous history is an important factor in assessing current risk, staff should not assume that a previous history of behavioural disturbance means that a person will necessarily behave in the same way in the future.’ This implies that seclusion should not be used on admission without immediate concerns for the safety of others, yet I found that this was sometimes happening in practice. One of my participants, Wendy* (a staff member), told me that seclusion is ‘for the safety of the staff because some of these ladies, they come in and they’ve been in [high secure services] and they’ve had bad times.’ However, I thought this situation had more to do with women’s previous services telling them that they were just visiting the unit, and the difficult final realisation that they were being detained.
In long-term seclusion situations, the Code of Practice states that ‘Patients should not be isolated from contact with staff . . . or deprived of access to therapeutic interventions.’ I found that staff had been told by managers not to engage with (short-term) secluded service users, for fear of making seclusion a pleasant experience. The worst thing about seclusion is that it is enforced, but many of the women were under constant surveillance during the day and therefore had to remain in communal areas. They may have welcomed time away from others and having space to discuss issues with a staff member. But there was very little danger of women actually enjoying the experience of the seclusion room. The majority of women I talked to described how distressed they felt in seclusion; some recounted feelings of retraumatisation, such as remembering being locked in rooms as a child or in previous services. For instance, service user Kate* said ‘I was really scared I actually peed myself through being frightened. I wet myself!’
Families are understandably alarmed when they hear about these practices, and they describe seeing the deterioration of their loved one where they are detained in ATUs, because of the systemic use of force and reliance on medication. The inappropriate and abusive over-use of antipsychotic medication in particular has been highlighted numerous times. Of course, anger comes with feelings of powerlessness and frustration that are hard to avoid when someone is detained, and still services rely on coercive methods of behaviour control at the expense of more therapeutic collaborative approaches – in direct contravention of policy. One key step to moving forward is allowing women to have more input into their own treatment plans, actively listening to them talk about their experiences. Another would be involving families and carers, who have abundant knowledge about the person and how to manage distress and the escalation of agitation (Fish, 2018). However, families’ expertise is currently being under-utilised or ignored. The Seven Days of Action campaign highlights the knowledge and understanding of parents – they have a wealth of experience and know best how to avoid the escalation of behaviour instead of simply relying on seclusion. Still, parents I have spoken to state that these services are not involving them in their family member’s care, or worse, that they are actively excluding them.
An important suggestion for change from my research comes from one woman with extensive experience of seclusion:
Bonnie*: If there’s another room away from seclusion, you know like a calm down room, I reckon that they should talk to us and say ‘How do you feel, what can we do to help you?’ and that.
Bonnie’s comment shows that women want more opportunities for therapeutic contact with staff, and to talk about what is bothering them, before seclusion becomes necessary. Surely this is what services are there for – to work with people rather than against them.
My recommendations for change in such environments are straightforward. Everyone needs respect, and all treatment should start from that position. For the women I spoke to, every single moment in a locked ward raises the possibility of disrespect, a punishment culture, and the risk of harm. There is a need for far more positive, helpful and supportive environments. This must start with listening to the people who have been in these locked wards. It also needs to incorporate the perspectives of family members, because they often have invaluable experience that can lead to much more respectful and useful responses to challenging behaviours. The voices, wishes and preferences of disabled people and their families need to be heard and respected – their insider knowledge is invaluable and irreplaceable.
Importantly, services need to address the reasons why seclusion is being used. There are many examples in the literature of services managing to reduce or eliminate the use of seclusion and this comes down to the systems in place. If everyone in the service feels valued, and time is allocated to building therapeutic relationships, then the focus moves from control and containment, to support and encouragement. If anger and distress are accepted as understandable forms of expression rather than as naturally provoking some sort of restrictive intervention, then this opens up ways for collaboration. If everyone is focussed on a person’s possibilities, then this changes the conversations that can be had.
Services seem to be focussed on a continuum of tools that are made available for staff to use: incentives systems, observations, restraint, seclusion. We need to disrupt this system switching who is talking with who is listening.
* These are not the people’s real names.
Dr Rebecca Fish, Centre for Disability Research, Lancaster University,
Fish, R. (2016). Friends and family: Regulation and relationships on the locked ward. Disability & Society.
Fish, R. (2018). ‘Behind this wall’ – Experiences of seclusion on locked wards for women. Scandinavian Journal of Disability Research 20(1) 139-151 (open access)
Gilburt, H., Rose, D., & Slade, M. (2008). The importance of relationships in mental health care: a qualitative study of service users’ experiences of psychiatric hospital admission in the UK. BMC Health Services Research, 8(1), 92. (open access)
Lawson, A. (2004). Human rights and the failure of policy to deliver: women with learning disabilities and mental health needs. Tizard Learning Disability Review, 9(4), 4-11. (Abstract)
Meehan, T., Vermeer, C., & Windsor, C. (2000). Patients’ perceptions of seclusion: a qualitative investigation. Journal of Advanced Nursing, 31(2), 370-377. (Abstract)
Mérineau‐Côté, J., & Morin, D. (2014). Restraint and seclusion: the perspective of service users and staff members. Journal of Applied Research in Intellectual Disabilities, 27(5), 447-457. (Abstract)