Bipolar Scotland
West Glasgow Branch.
27 march
Partick trinity church g115hg
7pm
RELATIONSHIPS WITH PROFESSIONALS
Graham Morgan- Mental Welfare Commission
Hello everyone, it is lovely to be back here again. I have been looking forward to seeing you since Victoria invited me along a few weeks ago. I find it hard to believe that it is easily a year now since I have been out to visit, still here I am. I hope we can have a good discussion and natter in the next wee while.
When I was talking with Victoria we decided my talk should be on the relationships we have with professionals.
I am going to give a personal perspective and along the way will add in some elements of what people at our mental health assembly said just before Christmas to give a wider view of what people have said recently.
I can be very wary and suspicious of professionals, more likely to look for hints they don’t like me than to enter conversations with them with trust and openness. I am not entirely sure why this is the case. I think it is partly to do with me, I find it hard to get to know anyone when I first meet them and in my personal life can be pretty terrible at communication and so worry that I will give a bad impression when I meet new people.
I also have a way of looking at myself probably due to illness and past experiences where I view almost every aspect of myself terribly negatively and so when I meet people often assume that they will dislike me, or find me boring, maybe assume I do not deserve the help they offer and often believe that they feel they have more important things to do than talk with me. With professionals this is all magnified – when I meet them I have a huge yearning for them to approve of me and to like me and to believe that I deserve the help they offer me.
So I come with very high expectations which are often but not always left unfulfilled.
I suppose I almost expect someone with superhuman patience, warmth and wisdom – someone who within minutes can quell my fear about how they might view me and of course, usually they cannot.
Despite that I have had some wonderful professionals in my life and some of those people have kept me alive when I have not wanted to live and have wanted to do anything I can do to harm or destroy myself.
I wish I could describe what it is about them that has helped me so much. In hospital sometimes I have met people who seem to have some sort of presence. I am not too sure how to describe it. I think they have been warm, calm, quiet and measured. They manage to reach through to me when I am almost unreachable, with just a few words they can get me talking and make me feel almost safe in their company. To me it seems like they value the people they work with and put being human at the centre of their interactions.
I remember one person who was very chatty and bubbly, she could make anyone smile in her company but equally knew when she needed to be quiet and listen and be there for me, she provided glimpses of joy in between times when I doubted there would ever be joy again.
Another would sit on the end of my bed and I have no idea what she did but from being silent with all the other staff she managed to breach my silence and help me talk about how I was finding my stay. This was in contrast to other nurses who seemed more guarded and more remote, who to my mind, were professional in all the worst ways. When you have someone within arms reach of you, you need to have some sense that they are there for you; that they can see the person in you and appreciate you rather than being seen as a case or a task they need to deal with.
I think a hospital ward is a difficult place to create the sort of relationship I crave when I am in a desperate place. When there are lots of very sick patients, when the ward is understaffed and there is nothing much at all to do and when you know the staff have power over you. That in the extreme they can stop you leaving the ward or sedate you or restrain you. You know they can force you to take medication, that they are in charge but also there is that knowledge that you are a part of a system which can be inflexible. You have to eat at a certain time, and if you are on a section may have to wait for time to get any sort of access to the outside world. You cannot drink or smoke or play loud music, you often don’t have any choice over what is on the telly or what you can do to pass the time.
These things all add up and when staff are in turn stressed and anxious and over worked, they can sometimes lose perspective and blame people like us for their own difficult work-life. I do not like it when we are seen as manipulative or when in desperation because hospital can be a desperate place, we act in ways we wouldn’t normally do. To my mind calling the police when our illness is causing us to be disruptive or discharging us when we self-harm or go into town and have a drink can verge on cruelty. Equally it is easy to do but can be so damaging when a professional judges us by taking sides in relationship difficulties. I know I stopped speaking entirely to psychiatrist who seemed to blame me for the fracturing of my marriage and wish he hadn’t done that.
Also, time is an issue, if we are in hospital for a short time it is hard to get to know people. Time, resources, patience, compassion, care, empathy – I know I need this from the people who care for me. It takes a great deal for me to want to agree to see the people who try to help me and if I feel no connection then I do not participate – whether that is a failing on my behalf or an issue for services I don’t know but anecdotally I hear that of more importance than any talking therapy that is delivered to us is the relationship we have with our helpers.
I imagine that nurses and so on are told over and over again that their job is not to become our friends but to provide care for us but the more I look at it many of the ingredients I need are indeed composed of the elements we would indeed call friendship but perhaps a measured friendship where arguing and high emotion is not a feature.
In the community I have seen people who have been wonderful for me. I have rarely known what they are trying to do for me or what they are trying to achieve but they are an important part of my life. We have had repeated conversations about whether I am really schizophrenic, we have talked about my alcohol use, my family, those aspects of life that I can find difficult. They have helped me when I am sure everyone hates me but they have also helped me when I have struggled with finances or forms and until recently they have been pretty good; though some are more ‘nursy’ and professional than others.
It has taken ages to get to know some of them because of that very suspicion I have had in the past but I do remember one nurse who I thought was wonderful. She mainly talked with Wendy and the children about anything from Disney Land to spa days but I knew she liked coming to see us and eventually I realised that she knew me so well that she could tell if was struggling or not just by being in my company; that made me feel very safe indeed.
She left not long before covid and then my relationship with staff diminished to my fortnightly jag in another town with people who didn’t talk to me and who I didn’t know. Since then it has mainly been about going to the depot clinic every two weeks; there I get my jag, see someone for about five minutes, they ask if I have any symptoms and I say no. I have made it clear that I am pretty much on strike with them; they don’t know me and don’t seem to know how to get to know me and I don’t really want to know them.
However in recent weeks our mental health team has changed; they are ditching telephone appointments and I think video ones too because they know they don’t work with me and many people like me. They have managed to recruit new CPN’s and they are once again assigning them to us individually and in many cases intend to come and visit us at our houses instead of asking us to traipse into the clinic. I think I like my new cpn but am not sure just yet if I do.
My psychiatrists, most I like, most seem to believe in what they do, but to be honest I couldn’t say I have a meaningful relationship with any of them, it really is all about treatment and medication it seems with them.
However there are other workers I see who act very differently, they may still have boundaries and be professional, but they act more like equals, whose aim is to make our time at the wellbeing centre I go to as helpful and pleasant as possible. They are less rigid; they will give us lifts in their cars. We have their phone numbers, they reply to emails in the evenings and on weekends. We rarely talk about mental illness, instead they create a bedrock that creates a community and a sense of belonging. Jeans Bothy with its small team and wonderful members is where I don’t have to pretend and don’t fear what people think of me that much, instead I feel safe and cherished there. I am not given targets or goals. I go there because I want to and I go willingly and happily and when I can do, donate money or time to it. It is totally different to statutory services.
Lastly Argyll and Bute Rape Crisis – when I first heard about them I assumed they were just for women and when I heard they also saw men I assumed they would look at us with suspicion. Instead it has been the opposite. A welcoming safe place where tears may never be far away but so is laughter. A place of peace and liberation and again a place I have been told I can go to for as long as I want. A place where if I cannot talk of certain things I can veer off the point in long winded tangents and not feel that I have harmed my space there by just wittering.
Going there has felt like finding people who will listen to me and let me talk about things I have wanted to talk about for forty years and never been allowed to in statutory services. It has been amazing.
When we were talking on one of my zoom calls we were talking about how staff can develop a helpful relationship with us. Some of it is about a change of culture. My personal wish which I don’t think is widely shared is that we follow the example of something called ‘The Promise’ which is an approach the Government says should be taken with young people in care. Central to it is love, to give people the love so many of us need and do not have. And by love I don’t mean boyfriend and girlfriend, I mean love for our community, the ability to section us with love, to bring the quality of love into peoples work. Victoria can talk about this more as she shared a wonderful chapter of a book she had read on this subject with me which I have now misplaced. I think when I look at my peers they would tend to veer to the lines of boundaried compassion as what they would like from professionals. They say they would like people to spend time with them; to take away some of the judgemental attitudes we get from our workers as well as society and not to make false promises. Not to say they will walk our journey with us if they are not going to. Not to say they will hold our hope safe for us when we can’t, if they won’t. Not to look at their computer instead of us; these basic things.
And I suppose to learn about power because they do have power over us and if they cannot acknowledge that, that can sometimes be a problem, then we have a potential issue.
One of the ways we discussed helping professionals get to know us is by drawing up advance statements about what care and treatment we would want if we lost capacity but also personal statements. A personal statement does not have to be prescriptive but it can be a way of writing down information about yourself so that staff who have never met you and are maybe seeing us at our most distressed can gain a picture of who we really are. I have never written one but like the idea.
In my opinions we are a long way from what we want in our relationships with professionals. I worry that their very professionalism and the corporate cultures they are a part of can sometimes harm us. I worry that the pressures and demands they are under and the quick turn over of so many staff make it hard for them to build up any sort of therapeutic relationship. And fear the same happens with short term interventions when for many of us it takes ages to build up trust. I do not like it when they talk of the cost and burden we put on services, in fact I find it offensive. I get cross that they never seem to explain what they are trying to do with us, that I am rarely asked what I want from them. I am very sad that in the increasing pressure we are under that it is possible to see us as ‘other’ and the cause of their stress and therefore deserving of their negative judgement.
What I would like is professional development to have humanity as the core of it. For their appraisal to include asking us what we think of the relationship they have created with us and what we want from it. What I would like is for the need for professionals to place us at the centre to trump the demand of managers to meet budgets and targets – I have a terrible feeling that is impossible but we can hope for it.
The most wonderful thing that happened to me from a professional was to get back from a day out at Christmas and find a parcel of Christmas treats on my doorstep from Jeans Bothy – I very nearly burst into to tears at the thoughtfulness. It made me realise they really cared for me. Very occasionally I have heard people talk about being given kind notes of hope from staff when they are at their worst – these gestures that remind us we are thought about valued and cared for are wonderful.
Victoria has already given me some feedback on this talk – so lets have a discussion of what I have sent before you send me away – if you are all silent I will be mean and ask Victoria what she said to me!!
Thank you.