MENTAL HEALTH NURSING STUDENTS
University of the Highlands and Islands
15 November 11.00 – 1.00
Graham Morgan: Mental Welfare Commission.
TALK ONE
Inequalities and people with complex mental health problems
Hello everyone
This talk is about inequalities and the complexities of our lives and illnesses –
As you know already, My name is Graham Morgan, I work in mental health and have a diagnosis of Schizophrenia, I also dip into depression and anxiety and drink far too much – I am overweight, diabetic and very unfit – which is rather a stereotype about people like me.
When I e.mailed people about an earlier version of this talk I got many responses; one reply from someone said that when she had had a serious problem with her eye, the initial response from the medical profession was to assume it was psychological. It took ages before they realised she had a physical condition which needed a major operation, some time after, she broke her arm in two places in a fall, the A&E department initially assumed this was due to deliberate self harm. When she was due to return to work, her return to work interviews were all about her mental health rather than the problems caused by her injury.
Another person talked about how she was sure mental health professionals arguing about whether a person had a physical or mental illness resulted in his death because they took no action and another talked about a person who collapsed with physical issues mainly because the mental health problems that lead to his homelessness were not addressed.
Those short stories will be similar to stories many of you have and illustrate just one of the problems we face when trying to deal with our physical health and wider inequalities.
I assume you will have heard some of the shocking statistics about our physical health. I find it alarming, that with my diagnosis, I am statistically nearing the end of my life at the age of 60. I find it difficult to understand why the terrible health we suffer is not a national scandal and do not understand why we do not appear on telly, lobby parliament , speak in the papers and on the internet about this basic, basic, inequality.
I have a feeling that I know why we do not speak out as loudly as we can and it follows the following lines.
For many of us, one of the main reasons we die earlier is not just due to our physical health being neglected by professionals. It is not just due to the side effects of the medication we take and it is not just due to the fact that the outcome of some mental illnesses results in death; although those are all indeed tragic reasons why some of us die so early and do contribute a lot to our poor health and early deaths.
One of the major reasons for our early death is due to cardio vascular problems, issues with our heart, our breathing and, much as we resist this; this is often caused by smoking, alcohol, poor diet, drugs, and lack of exercise. We are, to put it bluntly, not very good at keeping fit and healthy and so, in a world where we are used to people lecturing us about our lifestyle it can be very hard for us to speak out about this because it sounds like it is our fault.
After all; we know what all these lifestyle issues do to us and so why do we not do the opposite and start to look after ourselves?
And at first glance it is hard to challenge this: we live in a world where responsibility, independence, self-management, autonomy, empowerment, control are the buzz words of people left, right and centre and if we accept their rhetoric, the solution is for us to admit to our failings, buck up, pull ourselves together and try to create a future where we control; not only our destiny and dreams, but also our health.
In some ways there is some attraction to this message; after all who is ever going to stop smoking unless it is ourselves making that difficult decision? And who is ever going to start to get fit unless we start to walk to the shops and avoid chips and mars bars?
It is beguiling this view and it does a great job at stopping us being indignant, it is very hard to say this is a huge rights issue if the policy makers turn round and say
“The solution is really in your hands.”
I am hoping that I can give some thoughts on why we don’t live the lives people would like us to and why the approach of promoting our own personal solutions, sort of misses the point.
But first lets look at identity and the things that make us feel good about being who we are, the things that inspire us to keep in touch with the world to keep that struggle, optimistic and positive.
Maybe for some of us the society we live in and the way we are treated by it and our own internal vision of ourselves has a huge impact on our desire and ability to be healthy.
What is the reality of severe mental illness in this country ? What is it actually like?
We know, well what do we know? We know that around 80% of people with a severe mental illness are unemployed. We know that stigma is a routine reality. We know being homeless goes hand in hand with having a mental health problem. We know the same applies to the prison population. We know our services are sometimes at breaking point; despite the rhetoric, we can struggle to get admitted to hospital and we can struggle to get seen when we are in distress and a huge number of us live in poverty.
You will of course know all this inside out but let us take the stereotype I am portraying. Let’s first of all add the illness which we know is pretty horrible. This includes all the apathy, all the sadness, all the paranoia, it includes that blankness and emptiness and that stultifying lack of energy. When we look at this first ingredient of our stereotype; does this encourage us to do all those healthy things we know we should be doing?
When making a cup of tea is the best we can manage and deciding to get out of bed is the major decision of the day do we really want to walk in the hills and soak chickpeas for a veggie stew later in the day?
A dear friend I know spends much of her time pretending she has a job; she cannot bear the humiliation of her reply to those casual enquires about what she does. How welcome do we feel in our society when we admit to years without work?
And benefits, just the old label of benefit scroungers and the content of those speeches by some of our politicians is enough to make you wither, to hide, to feel that terrible shame.
It took me twenty years to decide to claim benefits for my disability. I was lucky enough to get PIP straight away – and that says it all – ‘lucky enough!’ Why would I say that? And why am I already wandering what to do when people realise I don’t need it because I am not really ill? Why do I feel guilty for accepting it?
And poverty? It is true that you can live cheaply on lentils and rice but people don’t. It is hard and expensive to be healthy, it is not likely that you will spend your last fiver on a bus trip to the hills.
The litany goes on: loneliness; one of the great sadnesses for so many people. Without friends and people around you, where is the impetus to make a lovely meal? To go out for a wander? To play a game of football? To just feel happy and content with life?.
Then there are the attitudes around our care and the reality of what is available to us. I used to have a CPN but now I go to a depot clinic where I see someone for a maximum of five minutes every two weeks. There is no chance to speak and because in our mental health team we now only have half a CPN available and a few bank nursing hours for the whole area, there is little chance to develop a long term or trusting relationship. In fact my last three jags have come from strangers brought in from a neighbouring mental health team; such is the shortage and pressure on staff.
What if your health care worker is ignorant of the connection between depression and heart disease, or diabetes and depression, maybe for some reason she hasn’t let you know about the weight gain that comes with anti psychotics.
Maybe he doesn’t know that many of the long term conditions such as strokes and c.o.p.d are associated with depression.
Maybe she is quite judgemental and doesn’t acknowledge the effect of pain and weight on mental and physical health.
It could be that a health care professional is one of the old school and regards the mental and physical impact of ageing as inevitable instead of treatable.
Perhaps the local hospital we go to doesn’t have access to liaison psychiatry where all the links between physical health and mental health are well known with advice being available to medical staff who might still be very wary of the mental health dimension to health.
Maybe your patient was brought up in an area of deprivation and extreme stress where the future links with future physical illness are well known, but maybe no one is doing anything where they live to stop the same thing happening to their children,
Or perhaps they are one of the people with a mental illness who have experienced abuse and trauma in the past, they might have that horrible label: personality disorder. Trust might an issue, abandonment too; maybe they crave human warmth but the past means that they struggle to accept it. Maybe they are always one step from the most dreadful self- harm and yet when they say
‘Please, please help me,’
They are just told to remember their decider skills,
When they say they don’t feel at all safe; they are told that the decision to live or die is their own personal responsibility and when they lose it and get drunk and try to harm themselves maybe the police will take them to hospital but all that will happen is that they will be stitched up and sent home.
When they say:
‘I cannot cope, I cannot cope’
They are assessed as not being sectionable, or admittable, or are told they have capacity and it is up to them what they do. They have a short chat until they gain the strength to walk home and wait for the next time and the next time and how does that feel? And how does it feel when all they can think of is dying and they are told to take a nice warm bath?
How do you trust your helpers and those around you when those tired words about being manipulative and attention seeking are still commonly used in the worst of all senses?
And really that sad roll call explains everything to me, why do some of us smoke and drink and sit watching tele? Why do we not comply and not conform? and why do we do nothing much at all and get progressively more unfit and progressively more unhealthy?
There are a host of reasons not least of them being the medication that is there to help us and the lack of schemes to address our health such as yearly MOT’s but key to me is the reality that for many of us mental illness and all that accompanies it can signify despair and loneliness,
it signifies poor housing and little food, it is where the hope we maybe had as children is wiped off of our faces and we shake our heads at the way life and our dreams have turned out.
And if you feel this way and if you feel alienated and feel that society not only doesn’t care for you but actively dislikes you then it is no wonder that you do not always have the resources and the resilience to make life a better, happier, brighter place.
And so when a well meaning health professional suggests cutting down on the drink or taking some exercise people can say:
‘Of course I should but why bother when my only pleasure is a drink in the evening and a fag with my coffee in the morning? Why would I be worth looking after and preserving?’
I fear that for some of us our self- image and our identity actively stops us trying to be healthy, it really is too much for us and however much people preach responsibility and control at us, this will have little impact if we have no reason, no sense connection or belief in a better world to encourage us to take that active role in our health and wellbeing.
We need to be listened to, and that means so much more than giving us an opportunity to express ourselves. It means really trying to understand what we are saying and why we are saying it even when it doesn’t initially make sense to you and it means throwing away the cloak of expertise and judgement which can stop enquiry and really finding out about our world and how we inhabit that world.
Listening means something profound; it is a sharing and a learning and melding of different perspectives and different experiences and beliefs and of course varied levels of expertise. If done well it is something that is done with respect and honesty, with understanding coming at the heart of it.
Other words we need to think about are about compassion, they are about love and belonging or being cared for.
And that shocks me, it shocks me to think that a system; a multibillion pound system that employs thousands of people does not seem to understand that basic message and needs reminded that when life is at its very worst. When every day is a struggle you do not need to be given yet another workbook on stress management, you need to feel held in warmth, you need to feel treasured and believed in, you need that human connection that makes you think there is some point to be being alive, some point to one day taking the first move along the being responsible route.
If we feel a sense of belonging and acceptance, if we are valued and treasured and cared for and can share our experiences and our food and our stories. If there are places we can go and be with our own and if there are places in the wider community where we know we will be welcome rather than having to carve out our own acceptance then of course we can begin to think of ourselves in a new and more positive light. And then the ideals of self- management or recovery and of autonomy can flourish in a healthy way.
And for that we need to look at rights properly.
The right to be treated with dignity and not be discriminated against underlies almost all human rights legislation. We need to look at stigma; we need to look at our own self stigma.
We need to be aware of the power so many of us have over each other and how much damage we can do if we do not acknowledge that power or examine how we act when we have power over others.
We need to look beyond individual change, though that is important, to the collective: and part of that is the need for fairness in spending on mental health and physical health
We need to recognise that when a person is sanctioned because she cannot make an appointment, because life is just absolutely awful and nothing gets done properly or on time anymore that this is discrimination; just as it is when people get discharged from mental health teams and psychology departments because they are too distressed and ill to actually get to appointments . All of this discrimination inevitably leads to poor physical and mental health.
The bedrock of much human rights legislation is about participation, that includes listening to people like me and actually hearing us but it also means listening to those that struggle to speak. And it means resourcing those organisations that speak with and for us.
And lastly we need to remember we have a right to the best health we can get; we have a right to life and sometimes we die because those rights are denied us and sometimes because we are so lost, so alone, we do not have love, we do not have friends and at that, the point of health becomes meaningless; again with inevitable consequences.
I have a serious illness or so people tell me but I have people who believe in me, people who value me, I have a surfeit of cuddles and kisses, I have work, I have money, so, of course I have the motivation to look after myself.
In many ways I have the ideal life and I certainly don’t want to lose it. It should not be rare individuals like me who can glow with that privilege – people should not think that the support I get is unusual, whether that be from friends and family or professionals; the welfare state or society. The support we get should be something we take for granted – something we know of as our right.
(Photo: Levengrove park 2023)