PRIORITIES IN MENTAL HEALTH

PRIORITIES IN MENTAL HEALTH

CONFERENCE – MENTAL HEALTH 2013

Graham Morgan (Hug; action for mental health)

Hello; thank you so much for inviting me to your conference, it is a great privilege to be given the freedom to give my thoughts to so many people at an event such as this.

You will see from the program that I work as a manager with HUG (action for mental health) and that I have a diagnosis of paranoid schizophrenia, you will also see that I have an MBE for services to mental health.

There is a wee gap in my thinking there because when I was growing up frightened of the men in white coats come to take me away or even today looking at the adverts for the Tesco’s psycho patient, I don’t associate paranoid schizophrenia with being a manager of four staff or for that matter having encounters with the Queen.

When we gather pictures of people like me we exaggerate and make each other into caricatures.

Some people have said people like me are scum and don’t deserve to live; other people see someone like me and turn me into a hero, but in reality I am just me, being Graham: a disorganised person who loves to talk but sometimes loves to talk too much. Someone with a great big label that ensures I get treatment and that I can have something to talk about at the drunken end of evenings with friends.

It feels to me that we make decisions about what people are like and who they are just from the need we have to have to describe each other. We need to do this, but I am sure the preconceptions I will have of you from looking at the jobs you say you do on this program will influence how I speak to you and react to you before I have even met you.

I am not entirely sure what I am going to say but I think a little will be about expectations and perceptions and what people think we think we want.

I’ve been given a relatively free hand to speak but the broad theme is the priorities we have for the future and the policy context the government is working on.

Well I can almost do this in a few sentences or at least by showing you the single power point slide I am going to use today.

A consultation this summer with our members and groups across Scotland on behalf of VOX showed the following priorities for action from people like me:

(Slide)

FIRST PRIORITY

· Campaign on Welfare reform and the bedroom tax

SECOND PRIORITY

· Campaign on Employment,

THIRD PRIORITY

· Challenge Stigma, especially with young people and in education

· Look at Compulsion/detention, advance statements, named persons and human rights

FOURTH PRIORITIES

· Promote Recovery

· Look at Medication,

· Look at Self-directed support,

· Challenge cutbacks to services

· Look at whether the use of IT is good or not when helping us with our mental health.

· Challenge the poor attitudes that exist in some services

· Look at the isolation and loneliness many people feel

I’ll try to look at these as I talk but I will not talk in any particular order.

My first policy point and an issue that is an increasing one for so many of us across Scotland is Self Directed Support.

If you go into pubs in the city centre in Glasgow you will see posters put up by clients of the Charlie Reid centre pleading with people to support them in their battle to keep their drop in centre open.

Some of you will have closed ideas about drop in centres. I have heard officials call them mental health ghettoes and areas of exclusion and dependence. I hear lots of negative words from people who should know better.

When you are lost and when you struggle to wake up and when you are one of the 13% of people with a mental illness who have not had any physical contact with anyone in the last 12 months.

Then to gain the courage to walk across town to a place where there are people like you; where you can drop the mask you present to an indifferent community, where you can talk to another person, support another person, feel valued, have something to eat, find something you think you might do. Where you can do all these buzz word things like being included and engage in recovery and demonstrate the peer support we have naturally been offering each other for generations.

Then at that time you may feel welcome and supported. You may feel you belong and have value and maybe at some other stage, as happens with people like me, you may move on and find new ways of living and support but you will almost certainly remember and value that sanctuary.

So when people in the Charlie Reid centre, which is respected across the country, which is a place many of our members go to when they visit Glasgow, hear that it may close there is an anger there that we would do well to listen to.

The Charlie Reid centre is at risk of closure because Glasgow council, in its infinite wisdom, has decreed that it should be funded by the Self Directed Support payments some of its members will perhaps receive.

Let me tell you a few simple facts. As far as I know enthusiasm for SDS is at an all time low amongst us. In their haste to listen to the physical disability lobby and the learning disability lobby the government made the almost unforgivable mistake of assuming that what is good for one community is good for another.

The reason so many of us don’t take up self-directed support is because first of all, most of us don’t want it and are not interested in it and secondly most of us will not qualify for it anyway.

In the veil of bright shiny words around SDS; that talk of independence and choice and control and autonomy, we have a Council that is taking away the services that we treasure and value and rely on.

HUG was one of the few user groups that spoke out against self-directed support in the early days and is now supported by many other people. For a tiny, tiny, number of people SDS is transformative but for most of us it is an irrelevancy that has resulted in the possibility that, far from having choice and control and autonomy we may have almost nothing at all if we follow the model Glasgow Council is using.

I would call on the voluntary sector to stop clambering on the gravy train of cash for SDS and acknowledge what so many of them say in private that it is a huge backward step and I would call on the Government to shame Glasgow Council over what it is trying to do to our services.

Ah I’m busy getting impassioned !!

– I see that the Scottish Mental Health Strategy says that we should be looking to reduce our reliance on hospital services and again I would ask us to really look at what people like me want.

Yes, of course we want to be in control and we want to be independent and we want freedom and we want vibrancy in our lives but also there are times when mental illness is unbearable. Forget the rhetoric of saying all our exclusion is due to prejudice and bigotry, forget the sub text where people assume mental illness is just a social construct and look at yourself and your friends. Think what you want for yourself and for others when you cannot walk another step, when you cannot speak for fear of the tears that will flood down and you cannot think because your mind is clouded and cluttered with debris.

At these times our friends and lovers can ache more than they can bear at what they see in us and at these times we can be impossible to be with. We can be so down no one can talk to us. We can be so bizarre no one can engage with us and we can be so angry at it all that everyone deserts us all and at such times, when we can no longer cope, many of us want refuge and sanctuary and peace.

We want to be given the comfort to sleep in safety. We want that wee gap in our lives where we can let other people make the decisions, cook the food, look after the children, give us the space to collapse and slowly build back till we can face the world again.

When we are in these places we still need places like hospitals and we still need looked after and, at these times, having strengths based approaches imposed on us, having SDS or any of these sillinesses of what independence is seen to mean can be insulting and demeaning.

We give lip service to saying recovery is our own journey but sometimes we find superimposed on recovery concepts, extreme ideas with concepts of individualism and self-reliance and self-management thrust on us at just those times when we cannot even make a cup of tea, when we cannot even think.

So, yes of course we want to be independent and free, and creators of our own destiny but we also need to accept that compassion, being cared for, being looked after, being given security and asylum are also needed at different stages in our lives too and that this is also fine. .

We need to acknowledge that we are allowed to be weak and frail and needy. That vulnerability is just as human as empowerment and that not all of us instantly welcome your well-meaning attempts to empower and enable us and that that is not necessarily wrong. Things change and shift at different stages in our lives. Sometimes I want nothing to do with you at all and certainly find your attempts to liberate me patronising and misguided. At other times I ache to join in the cause that says we must grow our own lives to develop and at yet other times I want to hide under the bed covers in a hospital ward and talk to no one and do nothing.

It is listening to all the forgotten voices that say things you don’t want to hear too.

It is listening to people who have given up or retreated or found a quiet place to be and saying you have a right to that too and it is encouraging the people like me who do flourish and celebrate their lives to continue to do it and maybe to encourage us to reach out with that wee sparkle to our peers that says life can be better.

That it can be better if ever you are brave enough and ready enough but the leap forward into that bright future people promise you is not obligatory and yes sometimes promises like that need tempered with scepticism.

It is finding a myriad of approaches and adaptations to the vast difference you find amongst our community. It is thinking to yourself that if you have found a brand new model for how to treat all of us that it will almost certainly damage some of us too; there is no beautiful solution we all somehow overlooked.

That we need a multiplicity of approaches and the humility to know we do not have and never will have the answers to distress and anguish.

It is knowing that the person who takes on job after job in their struggle to contribute and regain status and be a part of it all again, can succeed and find a happier brighter life; a wonderful life and yet also can be the person who gives up in despair and finds razor blades and pills a better option and is lost and abandoned because the search for work and acceptance and understanding is not always successful or possible in a discriminatory and prejudiced world.

And it’s making sure you do not manipulate what we say for your own ends.

Yes I know nearly all the government surveys say that the people I know say that they want to work and they also know that if they did work it could transform their lives.

I hear that all the time too from our members. But I never hear reference to the follow on questions of

“Can you work? are you able to find work? could you survive in work?”

Many of the members we work with will look at us in astonishment and will say

“No, no, of course I cannot. I cannot even gain the energy to read the paper. I cannot summon the enthusiasm to get out of bed. I cannot manage my money or my food”

and you see how ridiculous so much of the welfare reform agenda is and how important it is to continue to have a voice for those vulnerable people who are having their lives blighted by misguided, ill-informed and unhelpful policy.

In HUG we know that the benefits changes are driving people to suicide and despair.

We know that the anxiety people face over their homes, their income, their stability, is destroying people’s wellbeing , left right and centre.

We see people in tears when they are threatened with eviction or pronounced fit for work despite the advice of their psychiatrists and though we constantly say

“Go to the advice services; the CAB” and so on,

we know that those services are already creaking with the demand being placed on them. We need those services that can support people at these times to be supported themselves.

I do realise that I must seem like I am ranting. These few minutes do no justice to our priorities.

We need to know that if we are desperate the hospital won’t insult us by saying that

“Suicide is a choice we are entitled to make”

Leaving the police no option to arrest us for a breach of the peace when they find us staggering in the street or clambering over the bridge’s parapet.

We need to know and discuss what we mean by self-stigma and we need our genuine shame to be listened to and acknowledged. We need slightly more than the rhetoric that says our sense of shame and guilt is purely a result of us internalising societies prejudice.

We also need to stop blaming the world for all our woes and turning ourselves into perpetual victims in our need to liberate ourselves through the comfort of knowing we are oppressed. And at the same time we need the world to know and respond to the fact that we are indeed oppressed.

We need to decide whether detention is cruel and degrading or life saving or both. In HUG’s latest consultation we think it is essential, it keeps us alive, but equally it can harm us and alienate us for ever.

We need a connection; a speaking of what this is like but maybe without a message: just the bold bare statement of

‘This is my life, this is what happens, this is what is like’

Just the story without learning points but with that profound connection and everlasting lesson that occurs through the sharing of ourselves with others.

We need to look at the gaping hurt that so many of us have children or parents that don’t speak to us and who we don’t speak to and we need to acknowledge how lonely it is when no one hugs you; when we cannot remember our last kiss.

We need to look at awkward things like how people react to us when we are either extremely overweight or emaciated and how we feel about our own attractiveness.

We need to remember that 20% of people with severe anorexia die as a result of it; that mental illness can and does kill us. We need to remember that statistically someone like me is already living beyond his allotted timespan if we look at the lifespan of people with my diagnosis.

And now I contradict myself yet again, because although mental illness is horrific, is the worst of all; my day is made bright every day by the people I know.

The person who is admitted every other week to casualty can give a stunning talk. The person who says she is disgusting and useless can paint a beautiful picture or give a friend hope.

For the last thirty years of my life I have been surrounded by people who daily surmount the horrors of loneliness and poverty and exclusion and illness and stigma.

Who surmount such terrors routinely and make me feel there is always something to hope for even when we know that to hope is dangerous .

And those people are the people who are members of HUG or VOX or ACUMEN or PLUS, they are the amazing one in four but they are also you; the people in this audience.

Nowadays in my work with HUG we have so many members and allies who also work in the caring services revealing that they have mental health problems too or care for people who have mental health problems. That the reason they do this work is to make a difference.

They or you, are the people that people like me say are responsible for the discrimination we routinely face in the health service. How can that be? – everything is thoroughly confusing!!

It is only by accident that some of you are seen as professionals and someone like me is seen as a person in recovery and someone else as a person with an enduring disabling mental illness.

To be crass; we are all in this together and although you have seen the priorities I have put on power point my personal priority is for dialogue and debate and respect, and learning that the vast majority of us are trying to achieve the same thing.

It’s just that we don’t have the answers and at present we find it easy to blame each other instead of seeking out the things we have in common.

So my priority. Challenge yourselves; challenge your perceptions and then challenge people like me who are so full of their belief in what is right and then laugh because by enquiring and questioning and listening to each other we are full of possibility and opportunity.

Thanks

[I have a vague memory that the conference organisers changed their mind about me speaking after I wrote this, so it might not have been delivered]

You can find out more about HUG (action for mental health) at https://www.spiritadvocacy.org.uk/hug

(Photo: Ardmore 2020)