Consultation event on seclusion 2019
Edinburgh Carlton Hotel
The views of people with lived experience on seclusion
14 November 2019
Graham Morgan (Mental Welfare Commission for Scotland)
Hello everyone
I usually have lots to say about myself when giving presentations but fear that in this case I do not have much to say.
I am meant to be talking about what service users and carers think about seclusion and maybe providing some discussion points.
Over the last few months we have been meeting user and carer groups to talk about their views on seclusion.
As it is something that is done very rarely we did not meet a lot of people with direct experience of it though you can see some people’s experiences in the handouts.
Like most of the people we met, I have never experienced seclusion. I am trying to reflect on how I would view it if I had been asked about it in the same way we asked people with lived experience in our meetings and I cannot make my mind up.
I know that when I was last in hospital I was on constant obs for seven weeks and not allowed off the ward for a number of months. I have such clear memories of how trapped I felt, how much I hated the sterility of the air on the ward, its stillness, its temperature, I loathed the hospital furniture, the clean lino. I detested the locked door and yearned so much for access to the natural world. There were points when I think I would have given almost anything to touch grass, to walk in the wind and the rain, not to have walls around me.
That feeling of confinement still oppresses me many years later and although I know this restriction kept me alive and am delighted to be alive I feel a sense of dismay that people can need restricted and confined and isolated from each other.
And yet when I was in that hospital I had my own room and at some points it became my refuge, my quiet and private haven to withdraw from the kerfuffle and general chaos of the ward, I treasured that – when I was finally allowed to shut the door and turn the lights off I luxuriated in the freedom and dignity I found within my own personal space. If however I had not been allowed to leave it, I am not sure how I would have felt. I suspect at times pretty desperate.
I suppose it is that isn’t it? When we are forced to do something, when control is taken away and barriers put up, it must be that, that means that a space, which at one point we would want to curl up in and hide in and never leave can, in an instant, become the same space but which one we are now confined to and when we curl up in it now, it is probably for very different and much more negative reasons. Indeed we probably feel much as if we were in a cell or prison.
And that is the essence of much of what people with lived experience told me, seclusion will feel bad if we feel that it is a punishment, that we have no choice about it . Some people said that they could easily see times when they would much prefer to be in a place alone, to escape from their own behaviour and the activity on the ward to many other things. In fact for some people solitude and silence could help them calm down and find some peace. To be removed from the fear and stimulation of the ward could, on occasion, be a boon. But again and again people said it would work if it was an option that they chose; that they knew might happen and which did not signify to them a feeling of wrong doing and punishment.
And that takes me to the other perspective, I have never been physically forced to take medication and the extent of the restraint I have experienced has been being frogmarched back to the ward with six nurses around me. But I do remember agreeing to take a jag only because I was told how horrible I would find it to have nurses surrounding me and restraining me in order to give it. I remember feeling very alone indeed at that moment and very scared, and likewise when I was being marched back to the ward, except in that case, I also felt humiliated.
Most people we spoke to said that if they had the choice between forcible medication and restraint and being confined to a room said they would prefer the confinement, spoke with horror at their memories of restraint and forced medication and of witnessing it or just contemplating it and yet I am not sure this provides us with many answers because although some people said that they would prefer medication that they didn’t want, to being stuck in seclusion, there were also those who I think were more realistic, who said that seclusion is likely to come with a side helping of medication.
I wonder about that, if medication does indeed work and there seems a lot of evidence that it does, I would not want to be medication free and as a consequence spend extended periods stuck in a place on my own.
But then other people would, would perhaps have it in an advance statement and maybe that should be respected.
And then the very name ‘seclusion’, it implies something and what it implies is something that is not very nice, some people we consulted said that we should not use that language, instead we should use language that demonstrated that people needed a high level of care and were very ill and needed a high degree of sensitive support.
I do not , as I have said, know what seclusion rooms feel like and indeed do know that many hospitals do not have them but where they do exist I wonder about the experience of being in them. People have talked about grey cell like spaces. They have talked of what seem like gym crash mats on the floor, and this horrible, horrible, place they have had to stay in and, of course, when we are determined to cause damage to ourselves, to others and to the environment around us I can see the need to keep both property and people safe, but again does it have to be done in such a way that people feel that they are being punished?
In the groups we met with, people talked seclusion rooms and said that they should have nice colour schemes, pleasant images on the walls, comfort for if they are lying down or sitting, maybe music of some sort or the sound of nature, all the things that might give a sense of calm and protection, the sorts of things that might bring some odd sort of peace. It does sound pretty basic and maybe in some places the equivalent of seclusion rooms are like this, I do hope so.
Despite our concerns about it and the feeling of a few people that it should not be an option, most people felt there might be times when it was needed as a last resort and that this would be better than being restrained and forced to take medication for some of them.
But and there is a big but; people talked about de-escalation and they talked about (which may make you sigh) and that was resources, they said seclusion may be avoidable if there are enough staff and there are enough well trained staff and there are the right attitudes and the culture of the ward is positive.
They said that being on a psychiatric ward can be lonely and frightening and that in such situations it is easier to kick off and it is maybe easier for staff to use force and seclusion than to work alongside us to find ways of avoiding these situations.
I do admit that I have no professional knowledge, but it does make me think, I remember talking recently to the parents of a man with autism and learning disabilities who was often in seclusion and maybe for good reason but how that is now a thing of the past as he is now in a ward environment where he is respected and his needs and way of conducting himself understood and adapted to .
To my mind this is key and it is a key which is very rusty and may be in the wrong lock, may never work with some people, but I do hope that situations where we know people are violent and frightened and angry have as much chance of being turned around as anything else, easy to say from the outside, much harder to implement if you are the ward manager and your staff are being injured and the fellow patients are traumatised by the commotion and violence.
I have no answers but my only pleas would be to recognise that seclusion is frightening; usually indicates someone is extremely unwell and that they have a need for the highest quality nursing possible. How and in what form that might occur I am sure you all have better ideas and knowledge than I do.
Thank you.
For more information on the Mental Welfare Commission visit : https://www.mwcscot.org.uk/
Comments