Working in Partnership

Working in Partnership

NHS NEWCASTLE AND TYNE

ANNUAL NURSING CONFERENCE

15 MARCH NEWCASTLE 2016

Graham Morgan HUG (action for mental health)

Hello

Many thanks for inviting me to talk with you, I love coming to places like this and being given the privilege of musing and pondering.

My name is Graham Morgan, I work for HUG (Action for Mental Health) in the Highlands as their special advisor and have a diagnosis of Schizophrenia. I am also detained under a compulsory community treatment order.

I’ve been asked to talk on partnership working and at that word I pause a little. In the world of policy and planning, partnership working is used so much that it has almost lost its impact. I have been asked to concentrate on the clinical partnerships we have as individuals but after I finish talking about myself I will talk about that policy thing we talk of so much. But first of all – all about me:

I have a partner: Wendy. We don’t work in partnership, we hug and cuddle and kiss and go on mini adventures that usually involve charity shops and coffee, we weave around each other.

Wendy is much cleverer than me and is brilliant at talking while I think I might delight her because I am so entranced by her. We divide our work, I tend to do the cooking and the cleaning and the shopping and the washing while Wendy gets clambered over by children and generally instils happiness into them.

She also mends things: yesterday when I had given up on the broken dishwasher, she googled this and that and somehow magically it started working again! It flummoxed me a little as I had prided myself on my manly mending ability and thought I should have been able to do all the mending stuff.

We have only been living together for a few months and are still working out how we fit together. We are working out our different roles and it is delightful, our roles and the dance we do around each other will change soon I hope. Tonight I go out alone socially for the first time since I moved to Cardross. Wendy can’t do that yet as the wee twins are not quite used to me enough to let me look after them while their mum goes out. Hopefully soon I can change that and our partnership will change slightly.

I wonder what I think of when I think of my partnership with the people who help me.

When I think of Wendy I think of what I can give, how I can delight, how I can make her feel wonderful, it is that gift of me.

With my helpers I assume that I have nothing to give. It is a very different relationship, I’m not sure I even work with my helpers. I certainly never think that I enhance my CPN’s life or my psychiatrist’s thoughts and in fact now that I have been under a community treatment order for five years I rarely think of equality. I know that I have no choice but to let my CPN through the door to get my fortnightly jag in my arm or to see my psychiatrist when he wants to see me.

I am not an equal in any shape or form and yet people like you are all meant to work in partnership with me.

That means togetherness to me and togetherness involves a sharing and a learning and a giving. It means something mutual. It is hard for someone like me to think of something mutual when the only reason I see people like you is to discuss my impairment, my failings, my shame at how my life has been.

It is hard to think of mutuality when I assume you all have years of learning and understanding that I am unaware of and it is hard to understand this sense of mutuality because when I hear your knock at my door, although I am sometimes looking forward to that knock, I do not think that you do likewise.

I am, however charming or intelligent I would like to be, a part of your caseload and different. I am different in that you have codes of conduct about how to interact with people like me, you have boundaries and rules of engagement. Although we are in a partnership I will not hear how wonderful your day has become now that you have spent an hour with me, we won’t pause at the end of our conversation and say

“That was really good, let’s carry on that discussion in the pub in the evening.”

However much I might like it and however much you might like it we will never become friends and even if there are times when you want to give me a great big hug or me you one, that will never happen, in fact if it did it would probably lead to disciplinary action.

It is a puzzle isn’t it? A puzzle for both you and me. When I am assigned a new worker, there is no induction no protocol, no; this is how to interact with this new person. No set of rules except for those that remain unspoken.

And yet when I talk to my friends and colleagues about the people who help us, we talk almost exclusively about the relationship we have with people like you.

Sometimes it seems to some of us that the biggest therapeutic input we get from any of you is that sense that you care about us, that you like us, that there is some worth and value to us, in fact all those things we might get if we had more friends than we commonly have.

Isn’t that weird?! For me the key is the way we interact and talk to each other, it is building the trust and the rapport to dare to talk to people about those things we would never tell even our closest of friends.

A funny contradiction, for me the most important thing any of you can give me is the sense that you respect me, that you will give me that essence of what I would really like from a friend and yet for you, you have to skirt along the edge of friendship and never enter it.

And so partnership. I wonder what is the unsaid part of our relationship. I would be frankly alarmed if you did say that being with me helped you too, it might make something unpleasant out of a delicate dance and yet at the same time I wish that when you come to see people like me that you do treasure it, do celebrate those confidences and the hours spent getting to know us and understand us.

And what do I bring to this partnership, I bring an ache of a need, I bring sadness and confusion and despair and like many people I somehow expect you to mend it, to make it all better and wipe away the tears.

It is silly that we still expect this, there is so much talk of autonomy and independence, there is all the talk of responsibility and recovery and self- management and yet sometimes all we really want is that metaphorical hug that says everything will be ok, that we are allowed to cry, to be weak and vulnerable.

In contrast to this I wonder what I actually get. I meet you all with a whole world of unrealistic and ill- informed expectations.

When I met my new CPN a couple of months ago I got really angry. I was very nervous and anxious about what would happen. I had changed job and house and location and gained a new family and oh! there were such a lot of other stresses around. I didn’t actually want very much but when I asked her what would happen and she said that people who were stable like me didn’t often want to talk much with their nurses and so we would probably limit things to my jag, I was hugely offended.

In fact so offended that I told everyone I could find how unhappy I was about it and yet now three months later I feel a sense of guilt, a

‘You could have helped too Graham, you could have noticed that she was a bit uncertain too, a bit shy, maybe almost as anxious as me.’

So what people like me can give is such a basic thing, it is realising that people like you are just as human and capable of mistakes as me, that this relationship involves effort from both of us.

I like my new CPN now; we witter a lot and she is lovely to the twins and Wendy and very positive about more or less everything.

My last CPN.; up in Highland, I worked with for five years. Whether I worked in partnership with her or not I do not know but I did work in cooperation with her and I did benefit hugely from her help.

I met her while I was still in hospital, still wittering on about devils and evil, still on constant obs, still wanting to burn myself alive, still seeking to harm myself in any way I could.

And then, when I was discharged there she was, co-ordinating my CPA meetings, co-ordinating everything really.

And the things that needed sorted; well:

I had just left a 20 year long marriage and, to my surprise, found out just how incompetent I was at living.

She and others helped me work out how to budget, and gave me the confidence to buy a house, to get workmen in, to buy clothes, to learn about socialising, to begin to think of myself as an adult, not a fifty year old child.

She was there when there were crises at work and there when I doubted my friends and thought I would never have friendship again.

She did my wrap plans, my advance statements and my care plans with me, she cognitivised me and did some long course about dealing with anxiety, she helped me look at my drinking and she helped me with sleep and food and just the whole gamut of learning about a new life, a new unexpected and slightly frightening life.

And she dealt with that trust thing, those first few months when the devils would come back, when I would sit in a room and feel my evil wafting around the room. She gave me the confidence to tell her when these difficult times were there and reassured me that this would not mean going straight back to hospital.

She respected my point of view which was crucial to working together. We would have long conversations about whether or not I had schizophrenia which became so predictable that we would laugh at the repetitive nature of the points I raised.

She listened to me when I was lonely, she put up with the times I forgot my injection and co- ordinated all that needed done to get it in time, she organised getting my jags anywhere from England to New Zealand and she listened to me when I felt the ache of the absence of my son from my life and the ache of what I did by leaving my wife.

In other words she was someone who I could talk to about anything. This gave me such a sense of safety and security.

She did all sorts of therapeutic things with me which I was mainly oblivious to, she looked at those key elements of my wider life without which I would not have functioned. Elements such as work and people and physical health.

When life was delicate she would see me weekly and when it was fine we would go for a number of weeks without any need to meet.

This description, if heard the wrong way, would imply that she ran my life for me but in fact it was the opposite that she did.

When I left hospital I was desperate to start work again, desperate to just do all that living stuff, to get on with my life, my world but I was damaged and vulnerable and messed up. She gave me the security to allow me to be brave enough and confident enough and organised enough to do the living I was so desperate to do.

There must be some jargon word I could use for this, she participated in my recovery? She gave me access to self- management skills? –I’ve actually no idea how you would describe her function except to say that she seemed like someone who knew all about life and was willing to help me learn too. She seemed like someone who wanted me to have a good life, she seemed to like me, she never made me feel judged or incompetent, she knew all about mental illness and she gave me the bedrock that allowed me to take control and flourish.

And partnership because a partnership means a flow of something or other between people – well I have no idea if I contributed anything to her life, but I am pretty sure that she loves her job and loves working with people who go through the sorts of things that I go through.

She participated in me getting my life back on track, she provided the mechanics of me making my journey work, often I didn’t notice what she did but we were genuinely in a partnership of a mutual effort to find some light out of those dark times and that did also involve what I said earlier, the metaphorical hug and the invisible wiping of the tears when I felt too lonely and tired and sad to cope.

But I am doing my own living. My life is based on my partnership with Wendy and her children, it is based on my friends and colleagues and the new and wonderful connections I have made with my parents and brother and sister’s families.

My life is a great adventure and it is still delicate and still full of uncertainty. Two days ago, as I wrote this, I was putting my section papers in the filing cabinet, talking to Wendy about how I am waking early again and how I think the people on the journey to work are all staring at me.

I am not an equal partner and might, if I had the choice, do without any of the care that is offered me but I do know that the people who have worked with me in recent years have almost certainly saved my life on a number of occasions. I am immensely grateful for that.

There is something I want to say before I wind up and that is about perceptions. I have talked in glowing ways about the people who have provided support to me but it takes a whole ocean of learning to do that. When I first got help over thirty years ago, I was incredibly suspicious of all psychiatry and incredibly ignorant and incredibly misinformed . I also wanted mended –I wanted someone to come in and tweak some misaligned memory and make life beautiful again.

It took me half a life to realise that wouldn’t happen and the same amount of time to understand that life can be really beautiful when you stop expecting it to be perfect.

I am still hugely anxious about the psychiatric staff I meet, I still assume that they would prefer not to see me, I still assume they won’t like me and still believe that that think I am a fraud or just far too demanding and needy.

That’s the problem with partnerships with people like me; we can spend a lifetime asking you to like us, little realising that is not your job and yet knowing it makes all the difference, knowing a little love is sometimes all we really need.

And now for what you may think is the boring bit which of course it isn’t, it’s just different, so; partnership with groups like HUG.

Hug is a network of people with experience of mental illness from across the Scottish Highlands. We are a voice, which we express through reports expressing the views of our members on everything under the sun, we speak on the issues young people face and those of older people.

We campaign for services and participate in meetings with politicians in Parliament, to officers of the health board, to locality managers in regions of the Highlands. We speak about losing your children to care, to being in prison. We speak on television on radio and in the papers, we hold exhibitions and create art work, we give poetry readings and operate an active facebook page.

We raise awareness and challenge stigma . We go on nature walks and have made our own inner city garden. No subject is lost to us – we may talk about being gay and having a mental health problem or medication and mental health or employment, detention or inclusion or recovery or the natural world and physical health.

Everything we do is dependent on our members and volunteers. They make our work bright and lively and exciting and provide the inspiration and bedrock we and they need to carry on trying to change the world year after year after year.

And working in partnership. We start off with the assumption that, in different ways, we are all trying to achieve the same thing. How we do it and what will achieve a better life for people with mental health problems will be debated for as long as mental illness exists but we do know most people are hoping to make the world a better place.

We work alongside anyone who will work with us, we prize our independence and will at the same time as working with an agency on one issue criticise them on another but we try to do this responsibly and ethically.

We work with the NHS and the Council, we work with Universities and Schools, we work with the police and Government, we work with carers and the third sector and private business, we work with anyone who will listen to us and who we can listen to in turn.

The theme of working in partnership is the same – remember how my helpers help me to find my own life? We are hoping that you will help our communities find their own way and identity.

We have an obligation here in that we need to involve anyone with experience of mental illness which will of course involve people such as yourself who while being professionals may also have their own experience of mental illness and we also have an obligation to listen to and pay heed to the expertise people such as yourself have and you have an obligation, if you are confident that we do genuinely represent the views of a broad constituency, you have an obligation to try to help us achieve the goals people with a mental illness would like to achieve, after all that is more or less what your jobs are all about.

The problem is that our goals are many and various and often contradictory and that is where the task we have becomes difficult and complex but exciting none the less.

There is so much we could do together. We can so easily concentrate on these things rather than seeking our reasons to disagree with each other.

Or so I find – when I work with someone; whether it is to change the world or to change my life; I try to start from a position of trust and positivity - a feeling that we are in this together – I tend to find that if I lay aside my suspicion and unease everything is so much easier than if I have great big barriers in front of me.

Between us we have a huge amount to do, a huge amount to achieve and the task is immense, both when dealing with us as individuals and us as a community with a voice.

And some things are beyond all our control, it must be so hard to be painfully working to recovery and to see the DWP sanction someone and put that work back further behind than when you first started trying to instil a sense of hope in us.

In the same way with our communities. We know things are getting worse, that the budget cuts that you have tried to avoid and the obligation to work professionally and not shout publicly at the unfairness will soon impact in ways that everyone in our community cannot fail to see. When, as instruments of the state, you have to close our drop in centres, or reduce our support, when it becomes almost impossible to get into hospital or to be referred to services and when, in the name of personalisation, you try to persuade us to take on such things as SDS that are really another way of making cuts then it will become increasingly easy for people like me to become bitter and angry.

That hope that we can find by working together, by believing in each other’s motives will increasingly become fragile and that is the next stage of what we do. In Scotland our right to a collective voice is guaranteed by law, I don’t think it is here, but if we have a voice we need to base it on the world of our members and somehow that world needs to connect with your world.

However when I imagine it, I think you too, feel weary at the end of the day realising that sometimes you spend more time struggling to make sure that everything is at least as good as it used to be rather than striving and knowing services are on a journey where everything can only get better.

And yet we can do that –we can create the partnerships – dialogue - learning the world of different people, different organisations – it takes away the knee jerk reactions that always backfire.

And in that so much is possible

Thank you.

To find out more about HUG (action for mental health) do visit - https://www.spiritadvocacy.org.uk/hug

(Photo: Tree growing within the struts of a bridge across the river Leven. 11 2020)