What do we really want from you?

A talk I gave at the British Academy last thursday with a response by Jane Morris (chair of the Scottish Division of the Royal College of Psychiatrists)

BRITISH ACADEMY

Mental Health in Context: Research Policy and Practice

Key note Address

What do we really want from you?

Graham Morgan

10 July

10 Carlton House Terrace, London SW1Y 5AH

NATIONAL CENTRE FOR SOCIAL RESEARCH

Hello, it is lovely to be here. To be able to give my opinions and experiences and pass on those of the many people I meet all the time is a great privilege.

The title of my talk is WHAT DO WE REALLY WANT FROM YOU? Maybe a bit tongue in cheek because of course it is pretty much impossible to define what people like me want from you.

A couple of years ago in one of my workplaces we, as people with lived experience. drew up a list of priorities which we thought people should be addressing, it was a huge list but boiled down, the priorities that carried most weight were:

· Getting support on discharge from hospital,

· Then the relationships people like me have with the professionals that are there to help us;

· Having activities to do both in the community and in hospital.

· Also the support our family and friends offer us

I was surprised that we chose discharge from hospital as a key priority but a few weeks ago, I was in a discussion about it and ended up in much broader territory.

For me, when I have been discharged from hospital, I tend to be delighted. I will have been pleading to be let out as soon as possible and when I get home I will revel in the freedom, the ability to go to bed whenever I want, to eat and drink what I want and do what I want and ideally to get back to work as soon as I possibly can. For me leaving hospital means no one is going to watch me have a shower or go to the toilet and that I will be able to turn the light off in my room when I want to sleep. To be free of that always feels like the sweetest blessing.

It is only in later years that I have realised I was still very ill when I was back at work and only much, much later on that I have wondered about shame and the need to prove myself and nowadays the need to be kind to myself and my family and to find space to regain some peace.

I meet so many people who say discharge is like being thrown in a heap in the gutter; one minute your meals are made for you, you are relatively safe, you have people around you, you are, if you are lucky, getting peace from an awful situation to begin to see life afresh and then you aren’t. Instead back to a cold house, possibly with the mouldy remains of food in the fridge, and an overworked nurse who might come by in the first week to check you are ok and that really is so often not ok.

But for some of us discharge from hospital or for that matter discharge from any service means so much more than this and is so much worse. For some of us home, in the true sense of the word, is a distant memory, we don’t have a place of our own any more, family and friends may be a distant thing too, we can lose those connections. We may no longer have custody of our children; our friends may say we put them under so much trauma with our determination to die and harm ourselves that they no longer have the strength to cope with us.

Or with a new diagnosis in a world of prejudice, people may see us as the modern equivalent of evil. Certainly, nowadays I find I am nervous about those times when I disclose that I have a diagnosis of paranoid schizophrenia and that I don’t willingly take treatment.

We may have only just survived the last few months of crisis and though night is day and although we struggle to even make a cup of tea or leave the house we are meant to be searching for the holy grail of a workplace which we are told is good for us, even if that is the very place that has caused our fracturing to start with.

Discharge for some of us means that we enter a new world, where the hope we had falls away, the services we were promised slip away from us with exhortations to be responsible or remember the skills we have been taught. We lose community, belonging, connection, wealth and on top of that we are shattered from the whole experience we have gone through where our very identity and sense of place in the world is suspect.

So yes I would make this a subject for policy makers, not necessarily to check whether we are given support or if we continue to attend appointments or take our medication or to see how long it is before we relapse as so many of us do, but to understand what our world is like and what would make a difference. I would look at identity, connection, friendships, hope or loss of hope. I would look at the web of those around us, the culture we once were part of and what we might now be a part of. I would look at loneliness and poverty.

I would measure the ache in my heart that I have seen my son twice in the last sixteen years and still do not know whether it was me or my illness or the toxic relationship I used to be in which means he doesn’t want to meet me and every day, I realise that if I passed him in the street I would probably no longer recognise him.

I would measure the impact of old groupings turning away from you because you no longer fit in; you do not have the money, the confidence, the stability to be a part of them any more or the realisation that though you used to be the oldest child and that once had a status that now you are the one to be protected and observed and shielded from any difficult situations. I would measure what it means when family and friends say ‘Why do you mix with them?’ when your new community consists of other people with similar experiences of hospital or illness to you. I would measure in a new way; I would measure those things that really matter to us in a way that brings people like me to life in academic and policy papers.

The next priority people chose was the relationships we have with those that try to care for us. Sadly, some of us, far from finding comfort from our helpers, feel that we are viewed as the enemy. We ask too much, question too much and just generally do not behave or act in the way we are expected to especially if we have a diagnosis that is socially unacceptable and so we can be faced with what seem like punitive or patronising actions when we encounter those paid to care for us. When services are stretched sometimes it becomes easier to blame us because we stubbornly do not get well in our allotted time and do not recover as we should and do not act gratefully for the sparse services we receive.

Speaking very personally, there is a lot of talk about boundaries and the need to protect us and our workers from unhealthy relationships but for me the most unhealthy relationships I have ever been in have been when I am expected to talk about the intensely personal or seek help when utterly vulnerable and I know that the person I am speaking to has no knowledge of me as a real person at all. To me kindness, compassion and humanity are everything, in fact I would go further; for years I have said that if we are to be sectioned it needs to be done with love.

I am so glad that the Promise in Scotland was founded on the research from thousands of young people in care who said what they needed most in their lives from professionals is love.

I think that applies to all of us, I would research things like this too and embed them into policy. I would find out what difference genuine kindness and the ability to remain human in a corporate world makes to people like me I would make sure that every care professional has to ask their clients, as part of their appraisal, how they make the people they care for feel.

Do we feel respected, and valued? Do we feel we still keep our dignity when we enter the world of mental illness and if not why not?

I would measure the difference of the CPN I saw for three years who met with my partner and her children and got them all laughing and said she really looked forward to coming to see us and who I learnt to trust and speak with, to someone who doesn’t even know my families names, doesn’t know what I want in my life and woodenly asks me to say if I have been having any symptoms recently.

I would measure the relief I felt when I was surrounded by nurses amid blaring alarms after I had cut myself on the ward and somehow the nurse managed to get me to pass my blade across. I would measure the tenderness with which he treated my wound and the cold soothing saline solution and the calmness and the lack of anger. In contrast to the time I was rebuked when I tried to hang myself on the ward and was told how difficult I was making it for the nurses to nurse me

I would also measure the humiliation of being stared at directly when I was on the toilet compared to being observed discreetly. The nurse who would sit on my bed and manage to get to me talk when I didn’t think I could. My psychologist who I have waited ten years to see and who makes me feel safe and yet gets me to work on my life in ways I never have before.

I would also measure what it means when we meet the other workers, those in the third sector who, unlike statutory sector workers, share their phone numbers email addresses, who give us lifts in their cars, who reply to our emails on the evenings and the weekends; who create a web of security for our community and although they are paid, remain resolutely human, resolutely part of our community, happy to be flawed, happy to talk about their lives not as a therapeutic tool but because they live alongside us and value us as they value anyone else. I would measure how that makes us feel compared to the impersonal voice of an answer machine and the likelihood that our cries for help initiate complicated processes to explain why we cannot get the help we crave.

Activity sounds like a simple thing, maybe almost a petty thing, perhaps not too important in the context of health but I would disagree. I constantly see people who are isolated and alone, people who live in a grey mist with no one to connect with, a world where there are no kisses, no cuddles, where laughter is only bitter and cynical.

It is a desperately sad world and to my mind if the Asylums of forty years ago were one scandal they have been replaced by the second scandal of alienation, and loneliness and the utter misery so many people I know now experience.

the comment of a long term patient over forty years ago when I was first admitted to an Asylum that

‘you are scum here, scum.’

Still resonates. Many of us still feel like scum. I would research what it does to us when we feel like this.

I would measure what it feels like to live in a society where you feel worthless and where people in politics and elsewhere can now only talk of the burden we are to society.

In contrast I would measure the value of places like Jeans bothy, the wellbeing hub I go to where when I walk through the door I am already smiling because I know I am welcome and that I do not have to pretend to be anything other than myself.

I would try to distil the essence of when we are all giggling in the photography group on a Saturday which one of the members runs or what it feels like when the Shadow Minister for Health attends our exhibition in mental health week.

Maybe we need to admit that some of us feel and need a sense of community where we can just be with each other and celebrate each other and support each other and maybe it is time to recognise the effect when a community like this of respect and joy and value is ripped apart when funding stops.

Activity is how we participate in our society, many people do this through employment but for many of us with a mental illness employment is not a possibility, though with more support and less discrimination some of us may get there. But there are different just as valuable ways of contributing; may be taking a walk with another person, it might being creative or cooking someone a meal or looking after our children. these are some of the ways we play a part in our community.

I would measure the difference to our wellbeing when we feel that we have made a difference, even if that is just a tiny difference. I would look at the things that would encourage us to do stuff and the things that make this so much harder for some of us to do.

I have been treated for forty years and for the last fifteen years against my will and in that time I have avoided hospital. It may well be my mental health team and my fortnightly injections that keep me out of hospital but for me it is my family that makes the biggest difference.

I lived in a toxic relationship for some years and finding myself with a partner who I laugh with, who I kiss and hug and go on mini adventures with all the time, a partner I don’t argue with and who I am not frightened of, with her daughter who hugs me every day and says she loves me when I drop her at school and her brother who still says woof, woof, to me when I say I love him because that is our strange way of communicating.

Today when I was writing this talk I went to Jeans Bothy where I had a wonderful lunch . We sat around a table and nattered and it cost us a pound each.

I left early and ate little because I was due a walk at Ardmore with Wendy and Dash the dog. We walked in a refreshing breeze and bright sunshine, passing herons in the shallows and terns diving into the sea.

We sat on a grassy knoll above a beach amidst the smell of roses and gorse. And we felt wonderful. I had had a very anxious morning, I don’t quite know why, partly because I am going through CBT for psychosis which is wonderful but shattering but here we nattered and talked about getting the children from school later. Dash the dog wriggled on his back and walked in the sea. I smiled and smiled. So did Wendy. She is not working just now, the charity she managed lost its funding and she has taken the opportunity to stop work for a while. We rely on my part time wages but we live pretty frugally and so can manage for some months before Wendy will have to return to work.

It suits us. We have a good life. Most people with an illness like mine have nothing like this. I would measure my pleasure at seeing a tern diving into the sea after I was exhausted from seeing my psychologist. I would measure what it means to me that wee Louie says she loves me despite my silence.

But sometimes we need to remember the people who live around us; sometimes my words dry up, sometimes I hate myself and cannot see anything to be pleased about. Sometimes I yearn to see my life in colour again to have energy and spontaneity and this can affect those who are part of our lives and are called our carers, even if they don’t define themselves in that way.

We need to look out for our friends and family and remember the pressure they can be under. I need to remember that when I am in hospital my family still wait for the call that will say I have finally killed myself. The pain this causes.

And our children. Not so long ago wee Louie spent an entire lesson at school being taught about the crimes that people with paranoid schizophrenia have committed; it hurt her, she cannot imagine me committing a crime and yet her teachers were telling her the opposite.

I would look at the complex web we live as families and the sometimes unexpressed and unnoticed needs our families have.

Finally, I would ask us to look again at the past.

I visited a hospital recently which is still on the same site as the old Asylum. There is a gym room there that a patient goes to every morning at dawn. There he sits with a coffee and watches the deer and the badgers and the rabbits through the window as the day lightens. I would revisit places like that. Nature may not cure mental illness but it does wonders for our souls. I would revisit concepts such as sanctuary for those of us who need it.

I spoke to a friend the other day who talked about being given simple tasks when she was a patient and how still being able to do small things, to contribute to the ward created a sense of belonging and ownership and value.

And lastly I would question pretty much everything, especially in the world of severe mental illness, what is realistic and what are we trying to achieve? Sometimes I worry that we are doing the equivalent of insisting people with no legs get up and walk again. For some of us mental illness lasts for decades. I would be so much happier if policy makers could recognise this and accept this.

I would look at the dry controlling urge to get us away from the system, the horror professionals feel when they say we have become dependant on services and I would question it all.

We all depend on each other and for some of us you provide something we have never had, so why would we not become close and learn to trust you and how do you think we feel when, noticing this trust, you rip it away from us?

Instead I would ask what makes us feel safe and what makes us feel loved and respected and worthwhile?

We live by mantras of autonomy and choice and will and preference and responsibility – such cold concepts. Only oligarchs and dictators have complete autonomy and I do not want to be like one of them, I make my decisions with those I love and those I encounter and they are a melding of all our wishes and needs. I do not seek the best deal for me, I do not seek only my own interest, why would I? what a barren world that is. Sometimes I look after and sometimes I gasp with the relief of being looked after.

When I have been a patient I have not had the slightest interest in care plans or risk assessments or the administration of the ward I am on but I have been acutely aware of the way we talk to each other as fellow patients and how the nurses behave with us; the atmosphere that’s it! How do you measure an atmosphere in a ward or a workplace or a wellbeing hub or a mental health team? Because for me that is what I notice when I edge anxiously through the door looking for acceptance and welcome.

In conclusion I would like to finish with a small plea. Of course we need research to show trends in illness, to enhance treatment, to look at recovery or compulsory treatment and we need the research that will allow a huge complicated system to work both efficiently and humanely. That is a given, such things will drive policy and knowledge of the different communities we are all a part of but what I would like is the knowledge that brings research to life.

The reasons we provide support and what we want to help people like me and my peers ultimately achieve are numerous and need stats and figures and evidence to help people work out how to get there but underneath this is so much we could learn which could make such a difference. I will mention a few things that I think could help all of us, just a few among a multitude of possibilities.

We need to know how sectioning happens and its trends and the communities most affected by it but maybe it would also be good to know why so many of us, when everyone knows we need help, withdraw entirely from services. Why do we do it? Yes, to illness, yes, to fear of services but we also avoid the services we trust completely. Why is it when we suffer, so many of us avoid our friends and our relatives? Why do we do the opposite of what people think we should do?

And when we talk about participation and involvement and when people like me say ‘nothing about us without us’, why do so many of us, when put in front of multidisciplinary team meetings clam up, fidget and refuse to participate at all – in fact say we loath those meetings

And what is it people want for us. Some of us may seem to function fine by most measures but what is life like, when it is bland and monotonous and grey? Is a twilight just about but really not ok life; what we should really aim for? I hope not.

I would also like future research to have a human rights framework around it and a trauma informed one too. Simple things like putting people with terrible histories of abuse in dormitories and getting male nurses to shine bright lights on them every hour of the night, might become part of the past if we were just that little bit more aware.

Thank you

A RESPONSE BY JANE MORRIS (CHAIR OF THE SCOTTISH DIVISION OF THE ROYAL COLLEGE OF PSYCHIATRISTS)

What do our patients want from us? This is fundamental to the idea of ‘Realistic Medicine’ which is now much discussed but still inadequately practised, I fear. Certainly government data doesn’t seem able to look beyond the superficial. We offer a service much as we might offer sticking plasters, without too much thought for how to help people for whom plasters don’t work. Surgeons offering hip replacements can at least measure both how long the waiting list is and how many operations they deliver. We don’t usually hear how many patients end up pain free and physically active as a result. In mental health it’s even worse. Only CAMHS and Psychological therapy waiting lists are counted, and the assumption that a dose of psychiatry will result in reduction of pain and improvement in function is not rigorously examined.

What do our patients want from us? We tend to assume we know – and we perhaps do have some idea of both what is realistic and what the general population experiences as QOL – there are a number of highly respected tick box forms such as the DASS which examines how far experiences of depression, anxiety and stress are diminishing, and on the positive side of things the CORE, which examines the sort of quality of life experience which psychological therapies aim to restore.

In my specialist work in eating disorders we would consult with patients as to how useful they found the forms, and preferred those where patients said ‘I felt I was being asked relevant questions by someone who understood what I was going through’.

I dont know how much people with lived experience have been consulted in the development of these measures, and my experience has been that they are not in any case routinely used. I certainly was trained to use them alongside the CBT technique of asking people what they want out of therapy and regularly checking to see whether they feel they are moving closer – or further away from their ‘goals’.

There are two important caveats to what I have just said – it is unethical to simply let our patients work towards getting what they sincerely believe they want. To die by suicide, for instance, to spend all their time eradicating contamination, to lose weight by extreme starvation, to prioritise pathological values over the relationships and experiences their healthy self would want. So we do sometimes risk being ‘paternalistic’ and imposing our own goals without truly understanding the character of the person we may have never known outside this episode of illness.

Allowing people to achieve goals we don’t approve of is hard, but we have to respect different values. When I worked in a trauma clinic it felt terrible to me to treat a person for their PTSD with the result that they returned to fight and kill in a cause I felt was wrong, or returned to a domestic situation I believed was damaging. However, these are ethical conundrums where we seek expert supervision and support from fellow professionals. It is of huge concern that we normally function day to day without considering deeply whether we are in fact providing what people really need from us ( I prefer ‘need’ to ‘want’) and monitoring whether we are actually doing that.

Working in an inpatient setting with people with severe low weight anorexia was extraordinarily challenging but we did have some awareness of what our patient needed as priorities. They would not have healthy brains and minds unless they were renourished and supported to tolerate life at a healthy weight. And they needed help to learn the psychosocial coping skills to repair the lost developmental skills. We knew from research (yes there has been good qualitative research in this particular field) that what people overwhelmingly value when they recover from anorexia is the ability to love and be loved, and manage interpersonal relationships.

Interestingly, before recovery they often prioritise work-related goals and indeed achieve many of them whilst still very ill. I worry a bit about ‘achievement’ based goals, although there is a place for these. Being able to fully appreciate and tolerate the range of feelings life brings, and to do so in company with other people is perhaps more elusive and fragile but also crucial. A workplace can provide structure and predictable company and support some people’s wellbeing – I’m fortunate to have that experience. But the same workplace can feel oppressive, overstimulating and a place of bullying to others either because they have different personalities or are at a different stage in recovery.

This is why we need to develop and practice individual tailormade measures of how well we are offering healing, and why our treatments rely fundamentally on building and maintaining relationships as the context for the work. My Eating Disorders Unit was an old general ward, but thoughtfully adapted with passionate input from staff who brought consideration and colour to the physical environment. The two very different Adolescent wards where I worked had the same vibe. What they had in common was the spending of many hours in groups or one to one with patients in an experience I felt was close to both philosophy and poetry. We grew, developed and ‘recovered’ every bit as much as our patients did.

So Graham, I would add to your question, ‘what do we have in us that we can offer to our patients?’

To read more about my views on mental health and mental illness do have a look at my memoirs START and Blackbird Singing by Geilston Press - best found on Amazon or got direct from me at a discount.