Written: July 18, 2019
“He/she is difficult to engage.” It’s a term that I have often heard used by psychiatric staff when talking about patients. I was described as “difficult to engage” when I was under mental health services and now that I run a Suicide Crisis Centre, I frequently hear the same phrase used by psychiatric staff who signpost to us.
The phrase makes it sound as though it is a failing or a difficulty within us – an inability that we have to make good use of the service being provided to us. In reality, the likelihood is that the service was not providing what we needed so we didn’t engage. That’s not a criticism of the service, but rather a recognition that we are all individuals with our own unique needs. The same service is highly unlikely to be appropriate for everyone. I wonder why statutory services don’t instead use the phrase: “We haven’t been able to engage this person.” This places some responsibility on the service instead of placing all the responsibility on the patient.
I felt that I was failing when I was told repeatedly that I was “difficult to engage” or “unable to engage”. I still do. The language used still makes me feel that there is something lacking in me which meant that I couldn’t find statutory mental health services helpful. The label can have a lasting and profound impact upon the patient. It may make you feel that you cannot be helped.
It was in 2012 that I first came into contact with mental health services. I experienced suicidal crisis following a traumatic experience and was subsequently diagnosed with bipolar disorder and a post-traumatic syndrome. I was placed under the care of the NHS crisis team and struggled to engage with them. A different crisis team member would come out to see me every day. It was too much for me to be able to connect with so many different people. When you’ve been through a traumatic experience, it can be hard enough to trust and connect with one person, let alone a whole team. It was also painful to repeat information about the traumatic event to each different team member. It meant that I was constantly re-living the experience.
This was one of the reasons why statutory services didn’t work for me. My particular experience of trauma created challenges for me in accessing the service.
The type of services which would have helped me didn’t exist at the time so I set up a Suicide Crisis Centre and a Trauma Centre with the kind of services which would have made a difference to me. Our services have evolved to provide what our clients say they want and need.
My difficulty in engaging with statutory services showed me very clearly that an individual approach is needed and that we cannot provide the same thing for every client. We need to listen very carefully to each client and understand what their needs are. A small number of our clients feel unable to be supported by more than one member of our team when in crisis. In our experience it has been predominantly men who have told us this. It was perhaps hard enough for them to take the step of opening up to one person. It would have been too much to try to do the same with another person. For many crisis services, that would be a huge challenge and maybe impossible to provide. We know that if we don’t provide it, the client may not continue with us. We might never see them again. If they are at risk of suicide, we have to find a way to provide it if we can. A client who was at high risk of suicide spoke to me some months after his crisis: “If you had passed me on to another person, I wouldn’t have come back.”
My experience of becoming a service provider has shown me the responsibility we bear in trying to do all that we can to provide a service which is individually tailored to the person and which meets their needs. The onus is on us to try to help a person to engage – not simply to expect that they will. If a person wasn’t engaging I would feel that it was my responsibility to ask the questions: “Why have we been unable to engage them? What do we need to do to make it possible for them to engage with our service? How can we ensure that we do provide what they need, or if we feel we can’t, then how do we help them to access a service which can?”
I never had the experience of being asked by mental health services: “Why aren’t you engaging with our service?” Perhaps if I had been asked, we could have explored together why it wasn’t working for me and what might have helped. If we don’t ask or explore these questions, then the person may disengage completely and may be left with no services at all. If you are feeling suicidal, then that disconnection from services places you at much greater risk.
The most extreme example of my disconnect from mental health services occurred when I was sectioned. As I hadn’t engaged voluntarily with services, I was compelled to do so. A psychiatrist who saw me in 2012 had predicted that sectioning would re-traumatise me and would increase my suicide risk and, in his words, they “bent over backwards” not to section me. His predictions proved correct but he was no longer involved in my care. I tried to tell staff in the hospital that the feeling of being trapped, captive and the total loss of control and sense of powerlessness was re-traumatising. I spoke of being in torment in my head. Staff replied by saying: “We know that being sectioned is frustrating.” They simply weren’t hearing my individual reaction and made an assumption that patients generally respond to sectioning by feeling frustrated. Perhaps that is how they imagine it must feel when you are sectioned.
My risk of suicide rocketed and I became intent on suicide as a way to escape the torment in my mind which sectioning had created, because sectioning replicated aspects of my own past trauma: being effectively imprisoned and having all control taken away from me. I needed the re-traumatisation to be addressed. Fortunately staff took my suicide risk very seriously at that point and I was on one to one watch for several days. But what I needed was support and understanding from staff to address the inner torment in my mind. It wasn’t recognised, let alone addressed. If it had been, my risk of suicide would not have increased to such a high level. Had they not recognised my suicide risk at that point and put in place constant supervision, I would certainly have attempted suicide. A completed suicide would have been the ultimate and irreversible disengagement from services.
We cannot simply label people as “difficult to engage” and somehow categorise it as the problem of the patient. We have a huge responsibility when providing services and part of that is to ensure that we do all that we can to help a person to survive.
Zero suicide has been talked about in recent years as an ambition. In my opinion, zero suicide is about doing all that we can for each person to help ensure that they survive. It requires us to really consider what each individual needs in order to survive and do everything we can to provide it. If we place labels on a patient and consider that it is their issue that they can’t engage with services, we may fail to keep trying. We need to be tenacious in helping people to survive.
By Joy Hibbins: also published in the HuffPost UK: http://www.huffingtonpost.co.uk/joy-hibbins/please-dont-call-us-diffi_b_10988
Information about the charity Suicide Crisis and the Suicide Crisis Centre can be found at: http://www.suicidecrisis.co.uk
Twitter: @SuicideCrisis Facebook: www.facebook.com/SuicideCrisisCentre
Sources of support: UK nationwide: The Samaritans can be contacted on 116 123. In Gloucestershire, the Suicide Crisis Centre provides face to face support: http://www.suicidecrisis.co.uk