NHS HIGHLAND CONFERENCE
Thank you so much for allowing me to speak at your conference.
As I sit and write this I do not really know what I am going to end up saying.
The title of the talk is I value you you value me.
And for a brief moment I wonder why we need to talk of such a thing, except of course I do know the reason. It came about because, sometimes some of our members, when they see you and are helped by you, feel distinctly unvalued. The reason I am here is to try to remind us all of the importance of value and respect. I am going to concentrate on our interactions with doctors but think many of the messages may apply to other professionals too.
I suspect that you may be sucking in your breath and saying you are not here to listen to some patronising lecture about how you should behave and I do hope that I do not provide that. I also suspect there may even be a wellspring of anger from some of you, that says
“Do you know what we feel like when we are not thanked, not respected, not seen remotely as the people we would like to be seen by our patients?”
And although as I write this I am on a train and the night is dark and it is the end of a long day I would hope I could explore these things a little.
I may get things wrong, I may talk so much from my perspective that I lose sight of what our members face and I may make assumptions about you which are inaccurate for which I offer my apology.
At present we are in a round of meetings around the HUG network and one of the topics we are exploring is the use of telehealth in our care.
A little to my surprise is the huge enthusiasm amongst us for us to be given some means of communicating with you by e.mail or in some written form or even by film or audio in advance or after our meetings with you.
Again and again people say;
“I never know what to say when I am meeting so and so.”
They say;
“I get tongue tied, I forget things, I get confused, I get anxious,”
some of them say;
“I get all emotional and don’t know how to speak”
others say;
“I am so determined to show I am in control that I act capable all the way through and it is only when I get to the car that I break down in tears.”
Some of them say;
“I am frightened what he or she will think of me, I am frightened what they will do to me.”
Many of them also say;
“Afterwards, I never remember what they said or what they promise to do or what I have agreed to do.”
And that must be such a horrible and maybe familiar thing for you to hear, we are, it seems, like rabbits caught in the glare of headlights, frozen in your company or we are foxes, stock still suspicious of what you might say or we are already straining at our leash wild with rage at what we assume you are about to say or do.
And you haven’t even said anything yet!
When we talk about value we also talk about respect and I am imprecise with words or conduct or ethics but it would seem that for people to respect each other there is a need to have some understanding, some shared focus of vision of who the other person is in the room with us and why we are there.
And sadly I think often, for no good reason, this is lacking.
And value.
I must say something about value.
To be valued is such a wonderful thing, many of us, when we walk into a room with you, have little sense of self-worth, little belief that we have any value.
We may walk through that door, and we may be craving those words or those gestures that say to us that we are people of some importance to you, we need that feeling that we are flesh and blood people who are rich in the way all humanity is and maybe damaged in the way much of humanity is and yet:
when we look at you, we may already be assuming that we will be dismissed, that we are not equal, that we are beneath you.
Not because of anything you have done, maybe not because of anything that psychiatry has done but because we have grown accustomed to being seen as worthless and have become so accustomed to this that we search out every indication that will confirm this assumption and then when some quick glance at a watch, some comment we take out of context, some piece of advice we dislike or do not understand we can rise up with the anger that comes from feeling we are indeed worthless or we can sink back filled with that hopelessness that says of course we were right about what we fear we are all along.
It is in the nature of it, it is in the nature of what happens to many of us who have the pasts we have, and the status and place we have become accustomed to in society.
We come to you and some of us do not come to you willingly but many of us do, many of us come to you craving answers, craving the potion, the therapy, insight, that will release us from the horrendousness that is what our lives now consist of.
We do not know how you will provide it, we do not know what we have to do to get it but we come walking into your world hoping our lives will become better.
And at the same time we may be angry because we do not believe in our hearts that you can make it better, and we may be angry because we do not trust the pills and the potions and we do not want to face the pain and we do not want to live a moment more in the world we inhabit but in the back of our heart and the bottom of our mind is this wish, this plea that says
“Take away this pain.”
and at the very same time is the humiliation of coming to a stranger and saying;
“ I am going to bow to your knowledge, your intellect, your skill and I am angry because like everyone, I am proud and I do not want to need to do this, I do not want to admit to the people around me that I am a failure or ill at ease, I do not want to admit my incompetence’s and my anxieties and my uncertainties.”
And in that atmosphere we are often hyper alert; ripe for all the things that confirm the worst things that we think about ourselves and the worst things that we think about you.
And in you come, you, who maybe have a very personal connection to mental illness, in fact it may be the reason you have decided that your life will be dedicated to relieving the suffering of people like us.
And in you come and you may have had a hard time getting the children ready for school and you may be fed up with your rota for the month and you may wish the service operated differently
and in you come and you have become so used to people talking of suicide, talking of grey lives, talking of being in a prison of their thoughts and of how awful the world is.
And as you look at us from your chair; the slightest expression of blandness may cross your face, the slightest sense of
“I do not, will not be affected or involved”
There may be a sense of
“I have heard this a hundred times this week”,
there may be the sense of
“What do you really expect me to do about this?”
And in the neutrality of your face and your calm manner may flicker that distaste that we immediately grasp and feed on with dread.
That small gap in manners that proves to us that we are not worthwhile, that this indeed is a situation where we are not valued.
Long train journeys do allow you to exaggerate and take things to extremes but maybe the point I have made has some validity, if not many answers.
I suppose one answer is that we do need to feel value, we do need to feel respected, we need to feel that you are going to help us along on the weary journey we are engaged in.
Because if we do not feel that; we can lose that bond and that trust and that faith in you and ourselves that can help us find some way out of the mess we are in.
I will pause a little, do a reality check and think what my experience has been with you. I have seen a considerable number of you over the years so luckily if I give any examples I hope no one will know who I am talking about!
So many of us feel frauds when we see you, we think that we don’t deserve help, we think that maybe there is nothing wrong with us, that all we do is place a burden upon the NHS.
We cannot really believe that we have this mental illness thing, we doubt it is true, we think maybe we are horrible, maybe that what we say we feel or experience is not totally valid or true because nothing much ever is true completely.
We often wait for the confirmation that we are manipulative and time consuming and attention seeking, both ready to rise up in anger when you seem to confirm it and to hate ourselves that wee bit more.
So when we hear inappropriate comments about how we should really be working and all the other things that other people do, when we hear that we are not ill in the way we have been led to believe we have been for many years, we can not only be devastated because fundamental securities such as our benefits become suddenly uncertain and fragile but also devastated because we do not know how else to describe the place our life has led us.
Above all we do not want to think that this awful place is a place we find ourselves in where we should be legitimately judged and found wanting.
We do not want to think that our anger or our silence or that our wakefulness in the long night hours or our inability to get out of bed are something we are totally responsible for – sometimes we need that small branch of security that says you know we are suffering and that this suffering is not all of our making, is not something we need to use to further lash ourselves with.
Sometimes, for some of us the knowledge that we have some sort of recognised condition gives us a wee sense of peace.
And some of us feel insecure in a totally different way.
I have seen so many professionals in my life and almost all of them have been courteous and respectful and helpful though sometimes with wee blips.
But I am always worrying because of this. This sort of thing that must be so irritating to you all.
If you are always respectful and warm to me that is good but hiding in my head is that comment that says
“You are paid to be that,”
That bit that says
“This is not a friendship or a relationship, I will never go to the pub with you, never invite you to tea, never play with your children but instead need to think that you have to see me, are paid to see me. That despite your respect you may not respect me in your heart or value me. That, rather than paying attention to me, you may be wishing I would stop talking, that my attitudes are rubbish or that you must remember to get fish on the way home for dinner.”
And this anxiety is often so difficult to deal with, this anxiety is the sort of thing that makes me and others build barriers of mistrust against you.
Makes the way you react to me something that I watch, to check whether you feel any desire to help me or listen to me.
There are of course people who help me who I have little respect for, people who I lost respect for the moment they spoke to me.
And this surprises me because I am one of those cloying people who wants to like everyone around me and be liked by them.
There have been a few people who have been downright rude and dismissive, I remember someone who was assessing me as part of one of my sections, just her lack of belief in me, her contempt for me, her certainty that I would never ever find a way out of the place I had found myself in.
I don’t know what it was really: something cold and clinical and patronising and dismissive; a person with no interest in me and no desire to engage with me.
I laughed a lot with her I made outrageous excuses but inside I was burning with the humiliation of knowing I was as nothing to her, just some quick way of fulfilling her duties and her work.
But as a person, no, I didn’t measure up. And I felt that judgement and that contempt and it is sometimes at times like this when you are very vulnerable that you can feel alienated and lost in the very world that is there to help you.
I am going to use one particular example to describe someone who helped me a lot some years ago both to describe how our perceptions can get tangled but how sometimes our lives are so complicated and the involvement in our lives so sensitive a matter to us, that though we may want it, we also do not, and can get angry at the way we feel we are viewed.
I had met this particular psychiatrist and in the way of it, when you have seen a series of psychiatrists over the years you can be a bit wary when you get assigned a new one.
But he was good, he was not like a benevolent uncle as the last one had been, he seemed friendly, interested, he seemed to want to understand me and to listen to what I wanted in my life. I just thought to myself;
“You are a good man, you are someone I can trust and have faith in.”
And yet my life was in some turmoil at that time and my marriage was breaking into a thousand horrible pieces so when I was sectioned and admitted to hospital he had not only my illness to deal with but a fractured life.
Inevitably we needed to discuss what was happening at home as it was having a huge effect on me and those around me .
My wife was full of anger at our life and at my illness and refused even to open the documents that reported my section.
She refused to speak, visit or communicate with anyone in the hospital and over the weeks this psychiatrist did a great job of gaining her trust and listening to what she was going through until she would willingly phone the ward staff and speak to him and attend ward rounds.
Unfortunately it seemed that the more he was able to engage with my wife the more I felt my perspective was being ignored. I got so fed up with the comments that I was a complex and complicated person and the thinly veiled allusions that my wife had had a very raw deal from me.
And maybe she had, I am still trying to work that one out.
But when I was given a pass into her care and expressed my unease about this, my horror of having to sit through a weekend of arguments, I was reassured that I would be able to return to the ward at any time if I needed to.
When, on the first evening home, my wife smashed a coffee table over my knee and I, who have little experience of pain, felt the sort of pain that makes you suck your breath in so fast, with such a shock that you feel you will never speak or breath again, I knew that whatever we were trying to save was unsaveable.
I did not cut short my stay at home because that is not how I act– I came back on the Sunday evening – I was limping and the nurses asked me why I was limping so I told them and it may seem a wee bit spoilt but I wanted some acknowledgement that the pass hadn’t been a good idea, that maybe there might at least be some validity to my perception that being punched and kicked and having glasses of wine thrown in my face time and time again was just as wrong as my declining love for my wife was to her.
And there was no acknowledgment, no recognition that made me feel that the people who were meant to be caring for me understood where I was coming from.
I remained a complex, complicated person who seemed, in the eyes of his helpers to be wilfully tearing a family apart.
And maybe I was.
But I so much wanted my views to be listened to – I knew my wife needed a voice – but I wanted to feel that I had a perspective to be listened to too, I wanted people to recognise that my views were not just a product of illness.
By the time I was discharged I had lost faith in that psychiatrist – as far as I was concerned the less I saw of him the better and if I could just be free of all mental health services or at the minimum free of him I would be more than happy.
And it is these complex situations which, however much we try to avoid them do need to be addressed: my failing marriage couldn’t be ignored, my wife’s horror of what was happening and distrust of all of you couldn’t be ignored and in these worlds, an element of judgement, a percolation of your own cultural vision and your own values will inevitably be communicated and people like me, blind to the delicate balance you tread, will inevitably be angry and resentful and feel misunderstood.
A few weeks ago, for the first time in my life I looked at my hospital notes and to my confusion saw a description of what was happening from that psychiatrist that was balanced and perceptive and even in the cold letters of a hospital form conveyed that warmth and respect that I had originally found. It had never gone away.
But in my world it had. It is only as I write this that I see how difficult his and your job is.
In conclusion – if I knew how to make you the perfect communicators, if I knew how you should act I would tell you and I would be very, very, famous if I got it right. But I don’t and I won’t.
We know when we meet people who have power over us, people who we either desperately want to help us or desperately want to leave us alone that we have the ingredients for all those things that we all want so much, that sense of partnership and respect and value to become places of confusion and misunderstanding and confrontation and alienation.
That comes along before you even open your mouth, that comes when we first get referred to you.
We need to overcome that. Some of the psychiatrists I know manage over and over again to help us feel that we are involved in our care, that we have a say in what happens to us and a view that is important and worthwhile.
Even when we seem to be acting in misguided ways they listen and pay attention to us, they make us feel we are equals and by doing that we become more engaged and more likely to listen to them in turn and more likely to play a positive part in our recovery.
They even manage to do this and retain our good will when they insist we come into hospital, insist in such a way that we, who may hate hospital, accept this decision and respect their knowledge of us and of mental illness.
They look at our world, look at our cultural and social references, try to understand our value systems and our perceptions and beliefs about our world and by doing this and engaging with us they can transform our lives.
It is no good being a genius at medication and diagnosis and all these things if the person you are helping has memories of what hospital was like a generation ago when she was last admitted and is so terrified of admission that she would rather risk suicide than enter a place like New Craigs.
It is that relationship with us, making that bridge that seeks to understand why we are frightened, why we believe we cannot work, why we believe we are terribly ill despite all the evidence and why we believe nothing is wrong with us despite all the evidence and it is realising that these judgements are the judgements of shared humanity and experience rather than the skills of the understanding of the mechanics of illness.
And it is understanding that someone like me can say “He was so cold and clinical and directive!” and the next person can say “He is challenging and warm and insightful!” and both of us be referring to the same person and both of us can be correct.
And then one day, it will be for us, for people like me, to understand that our conduct and our expectations and our dreams and fears are just as big a part of this relationship and can be just as constructive or damaging as yours can be.
Thank you.