Me and My Mental Health

ACTION IN MIND, AGM 2019

STIRLING

Hello Everyone

Thank you so much for inviting me to talk with you today. I gather the theme of this AGM is ‘Me and My Mental Health.’

I have about 35 minutes to talk to you but first of all I would like to stick to the theme and tell you a bit about who I am and what I hope to cover today.

When we label ourselves, as we all do at some point in our lives, whether that is as a friend, a father, a worker, whatever; a number of assumptions come with that. So at the risk of establishing a whole set of stereotypical images in your minds I will do some of that about myself.

My name is Graham Morgan, I live near Helensburgh with Wendy and her two young children who I try to support and live with; alongside their mother and their dad who lives just five minutes away from us. My life is one of great privilege, I work at a job I love, I go on lovely walks, I eat good food and have some wonderful friends.

However I was admitted to a psychiatric hospital 36 years ago for the first time, when I was 20, it was one of the old asylums and not a nice place and what I saw there stimulated my desire to try to make a difference for other people with a mental illness.

In those early days of my adult life, I was diagnosed as having borderline personality disorder, a condition that caused me much confusion and for which I received some very strange treatment, luckily in those days, I did not know how much judgement went along with a diagnosis like that.

When I was 28, not long after my son was born, I stopped sleeping and began to believe that I was possessed by evil spirits that were infecting people around me and warping my thoughts. Every bright light seemed to be inhabited by these spirits and my conclusion to this realisation was that I needed to die.

I was sectioned and spent some months in hospital, I have been admitted periodically under a section since then and now have a diagnosis of paranoid schizophrenia as well as odds and ends of depression and anxiety and drinking far too much.

For the last 10 years I have been treated against my will under a compulsory community treatment order.

I have very mixed feelings about this, I cannot persuade myself that I really do have schizophrenia and cannot agree to take medication but I also know that my life is at risk if I don’t take it and that I have a pretty wonderful life.

If I stand apart from what my heart tells me I would say that my family, my friends and psychiatric services give me the things that make my life wonderful. To wake up in the morning to Dash the dog at the end of the bed, to be greeted with a hug when a bleary eyed Charlotte comes downstairs before school, a kiss from Wendy when I give her her coffee and a request from James, if it is my day off, that I pick the children up from school, makes my day, and, if it is indeed my day off; to go for a walk along the seashore with the dog and then settle down to carry on writing my latest book fills me with gratitude and joy.

I used to be very angry at the way I was treated by services and still don’t like some of the ways I am treated but in many ways my voluntary work and my real job are an attempt to make sure that my friends and companions who spend year after year after year in pain and distress get as good treatment as me, have the rich and vibrant life I am privileged to have and are not fobbed off with short term treatments and goals, not told to take responsibility for their condition and lives when they struggle even to get out of bed in the morning, not get assessed for SDS only to be denied it or to just be alienated by the idea.

It is a task I will undoubtedly fail in but I feel so sad and sometimes so angry, when I see people facing terrible loneliness and terrible poverty and that hopelessness that can come when dealing with mental illness with sometimes no places to go to, things to do or people to speak to. I am angry that so many of my friends have bleak lives with little joy and little hope and maybe that is just how life is for some people but I don’t think it should be.

Right a bit more labelling. I used to manage HUG (action for mental health) which is a voice for people with a mental illness in the Highlands, I have an MBE for services to mental health, was a member of the Millan committee, which was responsible for the mental health act. I am an author but I work part time for the Mental Welfare Commission and have the awful job title of engagement and participation officer (lived experience) in which capacity I am speaking today.

In my work with the Commission, I travel the length and breadth of Scotland meeting people, one day I might be on Mull, the next Dundee, then Perth, then Aberdeen. When I meet people and groups I often consult them on issues that are important to us and maybe to them.

Over the last 6 months or so I have met 190 people and have been asking them what their priorities are for what we should be doing at the Commission and so have come up with a list of what could be seen as key issues for people with lived experience and their friends and family.

It is these that I am going to concentrate on for the rest of my talk; a sort of painting a picture of what we go through; the things we would like to see change.

The most common thing people talked about in these meetings was hospital. For me my memories of my last admission to hospital are bleak: having the light on 24 hours a day, having to go to the toilet in front of the nurses; being mocked by one particular nurse, not being able to go outside into the fresh air, to walk on the grass but apart from the mocking, the restrictions placed on me last time I was a patient were designed to keep me alive. I had my own room, my own shower, I could use my lap top and put music on, my fellow patients were, on the whole lovely, the staff were on the whole lovely. In some ways my memories are so bleak because what I was going through personally was so awful.

However when I speak to other people they tell me of the difficulty they now have of getting into hospital, their belief that you have to be so ill to be a patient now, that the ward becomes a toxic environment. They talk of how bad it is that there is such easy access to alcohol and illegal drugs when a patient and how difficult it is if you are a smoker and restricted to the ward and unable to smoke.

Hospital, to my mind, should be a refuge, a safe, pleasant and attractive place in which to recover, rest and find the strength to face the world again. For too many people it is not that, too many wards are places you don’t want to be because there is nothing to do, they look horrible, you don’t necessarily feel safe, and fear that you will be sent home before you are remotely ready to live back at home.

That is not how I feel it should be; if we are extremely ill we need to feel treated with respect and dignity, we need to feel that we will get the support we want, we should not find that the highlight of the day is meal times because there is nothing else to distract us, we should not feel that the staff are our enemies.

And, to be fair, when I visit hospitals with the commission there are often some people who are profoundly angry that they are there but most people tend to have good experiences with the staff but is it really right that nursing staff commonly find the environment of a ward so unpleasant and the chance of getting funds to improve it so remote that they go on sponsored walks and raise monies in other ways in their spare time in order to make the sitting room pleasant or to put a few benches in the garden?

Oh I can feel a rant in me. Do take what I say with a few pinches of salt but maybe by highlighting some of the inadequacies we can one day go some way to ensuring that people do get the treatment and support they need.

The next most important thing mentioned by people on my round of meetings was the treatment of young people. My niece turned 20 recently and her tales of treatment are shocking and although it is in England that she is mainly treated, I see parallels with Scotland. I think of the time she talked about being admitted as a teenager, trying to avoid three huge very ill men who were trying to get at her. She is tiny, she was distressed, she was frightened; she should not have gone through that.

It is wonderful that more and more people are talking about young people’s services and the need for them, but we knew decades ago the issues there were, we knew that if you could get help early you could prevent problems escalating, being ACE aware is not a new thing, we knew that trauma and our environment affects our mental health so many, many, years ago and yet seemed to do little about it. We were aware that more and more young people were coming forward with mental illness ages ago and yet it is only now that we are trying to do something about it, and that enormous leap between young people’s services and adult services is sometimes still so difficult to cope with. Sometimes it may be true that if you are a young 23 year old you might not really want to get your help and support mainly among people old enough to be your mum or your grandad.

We also know that services need to be age appropriate and not only age appropriate but respectful and aware of the culture of young people. The one good thing I can think of is that we now recognise that young people can and do get mentally ill, it is only a short time ago that people seemed to deny this happened, tended to see them as either just growing up with difficulty or not susceptible to the illnesses we adults get. I am glad that has changed, glad that more and more schools teach mindfulness, recognise that children can be anxious and depressed and need support with this.

After the issue of young people we come to the issue of the professionals who are there to help us. My doctor is a locum, he has been a locum for two years so I am lucky, I don’t have to see a stranger each time I come to the Jeanie Deans centre. I don’t have to repeat a painful and humiliating story each time I walk through the door but I always assume I might have to. I must say that I do not really trust him, not because he is a bad person but because I worry that the next time I see him it will be a different person; a stranger I have to see.

I am not sure what has caused such a shortage of staff, I am not sure why it is so hard to recruit people to work in mental health. I would think that austerity is surely one of the reasons, the fact that so many vacant posts are frozen to save money, Brexit is maybe another. But I think also there are things to do with the reward people get for working in mental health.

Speeches like this one must be profoundly upsetting for people working in mental health who are trying to make a difference; when all you hear is how bad services are, when you are working as hard as you possibly can, you can’t feel that happy. And when hearing criticism like this and knowing a part of you has to agree with it, it can’t encourage you, can’t really fill you with joy at what you do.

We need to recognise that if we place workers under huge pressure, often for low wages and little public recognition for the work they do; then of course people do not flock to the work place and do not stay in the work place, instead may get dispirited and leave, leaving us, the patients, with fewer and fewer people to help us and less and less security or certainty about who will help us and how often they will help us.

However before I leave this issue I would like to partly blame a traditionally and recently under resourced system where all services are struggling to give the service they would like to and partly because of the lack of funding, but partly because we are more corporate, more efficiency aware; services seem more and more expected to carry out specific outcome orientated, goal targeted tasks where in the need to make a measurable difference the ordinary humanity and adaptability we once expected can become an unexpected casualty.

Despite this I would like to acknowledge the wonderful work people do that is sometimes not remarked on. My CPN, and I know I am lucky to have one, is superb, she treats me as if she likes and respects me, values my opinion and wants the best for me. I am delighted with the support she gives me and from the CPN I had before her. Very occasionally I manage to go to a drop in in Helensburgh. It is lovely to hear the laughter and enthusiasm of the people who work there, but it is hard to maintain that laughter when you worry for your job and know you do not have the resources you need to do the job you want to do.

I firmly believe that a fundamental part of what professionals can and should do with us is to offer something of themselves, to offer, genuineness, compassion and in some fashion love. Without that we just become objects. For so many of us there is such a need to demonstrate time and time again that we are of value and are lovable ;the distance some people feel they need to create in jobs like this does not always fit neatly with the needs some of us have to feel a sense of value in people’s eyes.

Of course I cannot give a talk like this without talking about the response we need when we are in crisis. If your world has lost its moorings, if you really cannot see a future and cannot concentrate, cannot keep safe then you need somewhere and someone to see, to help, it doesn’t matter what your diagnosis is. That desperation to be kept safe and to be listened to and to be protected is a basic human need and speaking personally I do not care how good someone’s DBT skills are or how much they can take responsibility for their own lives and how much decisions about their survival are theirs and theirs alone to take.

I know from my own experience and that of so many people that I care for that at times we need that safety and security and respite from horrific lives and whether it is a crisis centre or a hospital or somewhere else entirely, whether it is a policeman talking to you for ages while you sit in the rain , a friend holding you when your mind feels it will explode or a nurse drinking tea with you in your house in, then we need it, we need access to people and places that will do this for us, we need the security of knowing that when we are desperate and in urgent need of help that that help will be given to us and not withheld because of some judgement about our capability or even the risk we pose.

I suppose that is a harsh thing to say about services but I have met so many people who, maybe they don’t need medical intervention no but they do need someone who will listen to them and respect them and offer the common gestures of humanity we are all obliged to offer each other by virtue of our very existence and the connections that that creates between us.

During this round of meetings people said there were so many things we needed to do and some of these can be so obvious. I am happy to admit that I sometimes feel at my most secure and most loved when I am around other people with mental health problems. To not have to constantly wear that mask of coping, to have a sense of belonging makes such a difference and no not all of us can offer each other support and not all of us would like a peer to be paid to support us and some of us lack to basic skills to help each other out but the value of that connection should not be underestimated. I love that relief of not having to explain the inexplicable, that knowledge that you will be accepted and that that acceptance is not conditional, that the people around us know the things that our anguish can cause us to do and still care for us and support us and value us. That to me is what peer support is all about.

And lastly before I go on to some tangents, it is years since I relied on benefits for all my income but three years ago when I finally went part time I listened to some of my friends and applied for PIP. I had no idea just how awful it would make me feel to do so. In my case not because of the attitude of the DWP or the difficulty of medical reviews and assessments but because I felt so guilty and such a fraud. When I walked into the CAB office I fully expected them to say

“How dare you come in here, we work with people who really need help and who really deserve help.”

When the rights worker sat down with me and reassured me and told me I was sure to get benefits I felt like crying and when later she sat down again and I had to give her the details of my personal life I felt crying again, mainly at the painful memories; the exposure of my private life and yet I am lucky. I did get the benefit, I didn’t need to appeal, it wasn’t the only way in which I got money so I didn’t feel everything depended on being successful in my claim.

I am glad we now have a new social security agency for Scotland that will deal with many of the benefits we have a right to and I like the values they seem to be trying to promote but I feel weary at the number of people I know who, while struggling with mental illness, struggle to make even the most basic of ends meet, who dread the brown letter through the door, who prefer to face sanctions rather than go for an assessment that they dread attending so much.

These are the some of the things people say are important, the things we should be looking at, and they are basic, they are simple.

Our treatment is not just about medication though that is important and all some peoples want but it is also about having places to feel safe, having things to do, having money and friends, being able to express ourselves whether that be by words or paint or song. It is all the things most people would want whether they have a mental illness or not; to know that you can get a hug in the morning a kiss in the evening, to have a reason and the ability to go shopping and make a meal that you can share with someone, to be able to sit on a rock by the sea and watch the sun go down and listen to the seabirds and feel some sort of peace.

Yes we need our talking treatments, we need out inpatient units. Sometimes we even need protected from ourselves, we need our pills and we need our support but we also need that connection and that belonging to the world that stops us feeling alien and alone, that stops us feeling ashamed of the fact that we cannot work, or struggle to communicate, that means that sometimes we greet a new day and actually look forward to it, that sometimes we know what we do that day will bring joy and value to other people and through that very act help us recognise that we have value too.

And what would I give as a message to the people who plan and commission our services ? I would plead for them not to be stuck on fashions, I would plea for them to reward innovative and exciting initiatives but at the same time to fund those services we know work, and by work I do not mean that they always get us better, make us into productive upstanding citizens, no I mean the projects that will cater to and respect that fact that some of us will never work, will always experience illness in some form or another and that we often have a simple need for long term support that gives us somewhere to go, to meet people like us, to have something to do and something to eat and if you need to be fashionable and name that a hope café or recovery centre or go into the past and call it a drop in centre feel free to, just remember these are basic simple things. It is with that sense of belonging that we can thrive and maybe not in the way you might want us to but thrive after our own fashion, I would like that.

That sense of community I mentioned; remember that – you can want to integrate us as much as you want, you can try to include us and make us mainstream and all these things and they are important but still we need those places and services that make us feel accepted and loved; those places and people who help us find purpose; who can drag us out of that terrible pit of loneliness where we have no inclination to do anything and give us the energy to look around us, maybe find some sense of meaning and the wish to try something new.

That is one plea and my other plea is so old fashioned and reactionary and probably anathema to some of the people who know what should and shouldn’t be said but not long ago I was speaking to someone and I heard a familiar story I hear quite often when visiting groups,

He said

“I know the asylums in 1975 were places of control; places that abuse occurred in but I had better treatment in those asylums than I do in a modern recovery focussed hospital,”

That talk of refuge and peace may be unpopular and costly but it struck a chord when he said:

“Do you remember that there were grounds to walk in? That there were things to do in the grounds, That we went to the pub with the nurses in an evening, or we went out to listen to music and did not get back till midnight; that there were bands who came into the hospital, theatre companies.”

Surely; despite the horror of some of our past treatment some of that was good? I would far, far, prefer to sit on a bench smelling the trees and the flowers and feeling the breeze on my face while talking to a fellow patient than circle a sterile ward doing nothing after having filled in a sheet saying what goals I have when in reality I have few goals at that moment, just the need to find some peace, some sanctuary. Saying that, someone said that something I once said struck a chord with him and I would like to repeat it now: what it was, was do not assume that we want the same as our therapists and helpers from our treatment; our goals and wishes may be miles away from the trite words of recovery and wellbeing, where we want to live, what we want to do, what we find gives us joy is more than likely not going to be set in stone, not necessarily healthy and not necessarily productive and might not fit with your vision of what you think we should want and think we should achieve.

Where does refuge or respite, where does sanctuary appear when we look at a 12 week CBT course which is sometimes all that we can offer someone who is trying to get back on track after suffering the most awful depression, the most awful lack of self worth and motivation for most of their life? I know that for some people those few sessions are all that are needed to get us back into work, into the flow of things but for some of us, we need the services that see us as people, real genuine, complex, lovable but often damaged people who take time to see joy again, who need to be able to fall apart over and over again and still be supported.

Some of us need the reassurance of knowing that for some of us, our illnesses and our conditions have been caused by the most horrific treatment and trauma and that society let that happen to us; society let us be harmed so much that we lost the chance to trust, to love, to believe there was anything good about us. In fact society betrayed us so much that some of us now do everything we can to demonstrate how awful we are, how disgusting we are.

And that is my final plea, when the society we are a part of betrays us before we even know what society is, then it needs to offer something back some recompense and solace for what we have gone through and additionally if we are ill and it has nothing to do with trauma then we still need to have the right to the services anyone with a physical illness would get without the layers of judgement that so often are attached to emotions and behaviours over which we have little or no control and those services need to be imaginative, for some of us singing or writing or walking or eating together or going to college are the things we want to do when we are making our way into wellness and yes we need the other things; the pills the jags, the doctors and c.p.n’s but also things like that, that brighten our day, make our daily lives less grey.

An a slight addendum , I was talking about behaviour – I feel no shame in saying I feel shame for what I have done to the people I love more than anything. I frequently want to die, my family have told me how much they dread the final phone call that tells them that this time I am not in hospital but have succeeded in that wish.

When I am in that state such thoughts do not worry me but they tear my family, my friends, those I love into pieces , this is not just about me or other patients; it is about the whole network of people who care for us, that can be damaged by and wounded by what happens when our personal worlds are falling apart.

That plea, that plea for the support our friends, relatives, daughters, sons, mothers and fathers also need. The simple acknowledgement of the fact that the horror we sometimes go through affects far more than just us.

To be honest I could have just said a few sentences instead of doing all this talking, they would be love us, care for us, protect us, respect us and when possible help us believe and know that we are capable of far more than we think we are and give us time, it can take years and years to heal; we should not have to feel shame when we do not recover as quickly as people would like us to.

Thank you

For more information on the Mental Welfare Commission visit : https://www.mwcscot.org.uk/