‘Make them stop, Mummy’: A family’s experience of restrictive practice

Our son was just 16 years of age when his special school could no longer support his needs and no other alternative, local provision could be found. Struggling as a family and without support, we were given the choice of a secure residential placement in England or one in Wales, which was 105 miles away. We chose the placement in Wales as it was closest to us. Our son went there as a voluntary arrangement under section 76 of the Social Services and Wellbeing (Wales) Act, 2014.

Our son had only been at his residential placement a few months when the first lockdown occurred as a result of the coronavirus pandemic. Just three days after he had been discharged from hospital with a burst appendix, our son’s placement closed to the world. He was just 7st 1lb in weight. It would be 15 weeks and one day until we saw each other again. The resulting restrictions had a terrible impact on our son’s mental health. His anxiety increased and he became depressed; he would self-harm and at times was unable to speak (selective mutism). This led to behaviours that challenge, which, in turn, led to further restrictions (for example, limited access to the bathroom due to flooding and smearing) and an increase in supine restraint. After having been restrained our son would sob down the telephone. ‘Make them stop, Mummy’, ‘Report them, Mummy’, ‘They hurt my fingers’, ‘I am a failure.’

Supine restraint is a form of restraint in which the person is held with their back on the floor with their face facing upwards. The review of the abuse at Winterbourne Hospital recommended that the use of the T-supine restraint (where the arms are positioned horizontal to the body) be discontinued (Flynn, 2012). The type of supine restraint used with our son entails the arms being held close beside the body. There has been no such call to ban this form of supine restraint. Furthermore, in Wales there is no mention of supine restraint in the recently published Reducing Restricting Practices Framework (Welsh Government, 2021). There is also no national data on its use, which means that it is difficult to discern to what extent supine restraint is being used and across what contexts in Wales.

So, what is it like to be telephoned and told that there has been another incident which has culminated in the use of supine restraint? What is it like to hear your child cry and scream down the phone in distress after they have been restrained? What is it like to witness such an event, to hear your child call out to you and be powerless to stop it? We do not have the words to describe how it feels, but we can tell you that it causes irreparable damage to the child-parent relationship. As a parent, your primary role is to love and protect. The day you fail to do that, your child will never trust you to keep them safe again.

I have experienced and been treated for post-traumatic stress disorder (PTSD) as a result of traumatic events involving our son. Baker et al. (2021) found that of the 214 family members of children or adults with a learning disability and/or autism who completed an online survey about potentially traumatic events, impacts and support, many had experienced a wide range of traumatic events, with reported responses consistent with complex post-traumatic stress disorder (CPTSD). Furthermore, families reported that agencies and professionals not only fail to provide support but add to the additional trauma by failing to listen, engage, consult and act (Baker et al., 2021).

A trauma-informed approach is integral to working with people with learning disabilities and to working with family members. People with learning disabilities are at a higher risk of earlier abusive life events and attachment difficulties (Beail et al., 2021). They are also less likely to be able to deal with trauma due to cognitive, emotional or relational difficulties associated with the learning disability and/or autism, as well as less access to support (Beail et al., 2021). What might therefore be viewed as challenging behaviour is more likely to be a coping strategy. When a coping strategy is met with restraint, further traumatisation occurs. We have seen how restraint impacts our son’s nervous system, making him hypervigilant, constantly on the lookout for threats, quick to anger and fearful. We have seen how restraint leads to shame; how it destroys the self.

We appreciate that in recent months our son’s provider has taken measures to try to reduce restrictive practices such as taking an extensive review of all restrictions, putting action plans in place to start to reduce them and writing their PBS policy in line with the Reducing Restrictive Practices Framework (Welsh Government, 2021). We are pleased to see that they are starting to work in a more trauma-informed way. However, fundamental issues remain. Firstly, the institutional environment is anti-therapeutic. It is not a home. Our son’s living space adjoins a corridor that acts as a thoroughfare for staff and other residents moving to and from other areas of the building. The noise and constant stream of people (many of whom are agency staff) cause our son to severely bang his head, ultimately leading to supine restraint. Secondly, our son is powerless within a system that is currently broken and under-resourced, the perfect conditions for a culture that can easily become restrictive. Our son thrives when he has a good consistent team around him, but across the social care sector recruitment and retention are affected by the perceived low status of the work, low pay, training and lack of in work support and career progression (Parliament Live TV, 2022). This has been made worse by the pandemic, with many having left social care to pursue better-paid work and working conditions (Parliament Live TV, 2022). It is harder than ever to attract people with the right skills and values to social care. The ever-growing reliance on agency staff means that our son is missing out on consistency, on the things that help to keep him feel safe and anchored. When familiar staff leave their job, he feels abandoned. All this leads to further trauma.

All our son wants is to come home, but he cannot due to a lack of suitable, bespoke local provision and adequate, consistent staff. Until then our son will continue to suffer because institutions cannot offer true care – only community, connection and home can.

Dawn Cavanagh Please direct questions or comments to the author through the Bulletin Editorial Team

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