Cuts

On wanting to die

It’s an avalanche of blogging at the moment, rather. First I wrote this on the assumption that people with mental health problems have no right to choose to die and then my colleague and Twitter chum Huw (@Huwtube) collected some of his thoughts on the topic. Between this and discovering, in the past ten days, that three of my former patients have died recently, it’s all been rather death-heavy.

Lots of the people I work with want to die. Most of them are old; many have dementia. Some are housebound, or bedbound. They may no longer be continent. Lots have carers who wash and dress and feed them. Some are going blind. Good physical health can be a thing of the past. Frailty and infirmity are what they see coming towards them. Many are terrified.

I often ask the question ‘do you ever think about harming yourself?’ It’s rare my patients say ‘yes’, but many say ‘I want to die but I don’t know how to do it’. I’ve heard that statement more times than I can count but it’s always been something that’s puzzled me – so many of the people I have worked with have known exactly how to kill themselves that the naivety of not knowing almost brings me back to another reality; one which is not so skewed by the desire to not be alive anymore.

When I heard about my patients having died – all from natural causes – I was sad, but that was primarily because I knew their families and I knew that watching their loved one suffer had sometimes been a torment, particularly towards the end. A part of me also felt that at least the patient was no longer in a state they didn’t want to be in. I didn’t wish them dead but I certainly felt a sense of something – I can’t name it – that it was over. ‘It’. I don’t even know what I mean when I say ‘it’. ‘Illness’ seems a silly word; ‘life’ seems cruel’; ‘suffering’ seems pompous.

Perhaps this is why it is so hard to talk about this stuff. No matter how articulate you think you are, how verbose – and I am certainly verbose – the language can elude you. I can’t always describe what I think or how I feel, and that means I might be clumsy or say something ill-judged and then I worry dreadfully that I’ll be misconstrued. As I acknowledged in the post for Discursive, I worried a great deal how people would construe what I was trying to say. 1100 words is nothing on a topic of this magnitude and there is plenty to think about and plenty that needs to change (I freely admit that the comments on that piece are far superior to my original post and they are very much worth your time). What I said, essentially, was that people who find life to be unendurable have a right to an opinion on whether they should continue to live or die and that mental health professionals cannot simply tell them they have no right to die. Conversely, people in distress who express a wish to die should be given the emotional and practical help they need. Ideally, they’d get it long before it gets to that point, but that’s a blog for another day.

Life can be unendurable for many reasons. Classically, we see it through the ’emotional pain’ perspective, but, thinking sociopolitically, there is more to it. The assault on welfare and social housing and the cuts to services have served to make life unendurable for people who may well have been coping before 2010. People are dying and the State is responsible for their deaths. I understand that people who are in a desperate state and who see no way out might want to end their lives. I don’t consider that ‘insane’ in any way; I can see perfectly well that it may be a rational solution to a problem which appears to have few alternative solutions. The difficulty – or one of them, I suppose – is that surely a health professional who supports that wish to die becomes unwittingly part of some kind of social cleansing? But equally, unless you can actually change that person’s circumstances and improve their quality of life, is it not unethical to consign them to an indeterminate period of despair?

I don’t know how you decide if life is worth living or not; not really. And I also don’t know how you can ever come to an conclusion about whether someone else’s life is worth living. I tried having this conversation yesterday with someone and my suspicion is that she was slightly horrified that I – a health professional and a Muslim to boot – could even begin to talk about supporting people’s right to die. I don’t know what impact my being Muslim has on my view of the situation but I’ve always tried to be the kind of clinician whose work is about her patients rather than herself. I try to stick to ethics and my principles and I cannot state where they came from any more categorically than I can state where my desire to do this work came from. The point, dear reader, is that it is not about us as professionals. It is about our patients (the fact I am writing this as a professional has not escaped me). That doesn’t mean we cut our professional selves off from our personal selves, but it does mean we need to get over ourselves and think about what our patients are telling us and what they need more than what we need. Being a psychologist is not about meeting your own needs. It’s about meeting the needs of your patients. It’s obviously easy to type and harder to do, but there it is.

I don’t know how I square that last statement with my earlier statement on being ethical. But then, this post is littered with ‘I don’t know’ statements. And maybe that’s just how it is – we don’t know. We don’t know when someone’s life is worth living and when it is not, and maybe nor does the person who wants to die. And I don’t mean that to patronise; I mean that the future is unknowable and therefore everything we do is based on our best guesswork. In my job there’s a lot I don’t know. I don’t know if my therapeutic approach will work for you. I don’t know if I can help you. I don’t know if I can give you what you need. And sometimes I don’t know whether life or death is the better option. I don’t like to get things wrong, not when it comes to my patients. I want to help you first time round. I want to give you what you need. And so when it comes to life and death I want to get it right. But there are no guarantees. And that’s why, when you ask what I think, I can’t give you an answer. I simply don’t know.

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On clinical psychology as part of the problem

It feels a bit trite writing this now.

Last week, (and believe me, I have never said these words before) I wanted to go to Birmingham. There was a conference I fancied going to, on the topic of ‘Power, Interest and Psychology’. The conference sprang from the ideas of David Smail, a deeply influential psychologist who died last year. I never met him but he wrote prolifically on ideas related to the causes of distress – not faulty genes or a lack of moral fibre, but a society in which power is distributed unfairly and in which humans suffer as a consequence. I love that stuff – the chance to think about the unequal structures we have created and the ways in which they can be dismantled; the chance to be (legitimately) angry; the chance to thrash the ideas out with friends and colleagues who are sympathetic to them. I didn’t make it because it was priced well out of my reach which, if anything, shows at least that the organisers, my professional body, retain some sense of irony. But I was going to write a blog, regardless. Then Paris happened and my thoughts were consumed with that. I have toyed with writing something on that – on being Muslim in Europe; on having spent my entire adult life being part of a group widely feared as potential terrorists; on the fact I am now more acutely aware of my Muslimness than ever before – but I don’t know what the point is. I wrote things after the London bombings and after Lee Rigby and after Charlie Hebdo and I don’t know what more there is to say aside from the fact that I am weary of it and I am increasingly feeling less safe as a Muslim woman and that I see no sign of any improvement.

So, in that context, you will see why it feels trite to write this now. But life does not stop because of atrocities and I am still a psychologist and I still think there is much to be done in the world of psychology. Those who know something of me will know that I struggle enormously with my profession. I think it is worthwhile, which is why I do it, and  I often enjoy it, but it is far from perfect and  I would be lying if I said we always got things right. I suppose my attempts to do things slightly differently – to organise conferences looking at social context and to be part of a group which contributed evidence for a DWP report on Workplace Capability Assessments – stem from this; from some sense that there is so much more to be done than spending the next forty years tackling only the resulting distress, rather than the root causes. I don’t believe in cure without some attention to the causes and I certainly don’t see myself as some kind of healer. I think there is value in the work I do with people but to be perfectly frank by the time I see them there is often so much damage that has been done that it cannot be undone. I may be many things but I am not a magician. I can do nothing about the fact some of my patients were brutalised by their parents; about the fact many were raped; about the children they have had removed; about the violence they have endured; about the bullying they have experienced. I can do nothing about the fact that they have grown up in a deeply unequal society in which being gay or black or poor or an immigrant is often stigmatised. I know that experiences such as these lead to distress – I mean, I have data to back it up, because apparently we can’t just think in terms of common sense anymore – but I see virtually no efforts to do anything about it. Instead, we only see people when their own resources have been entirely used up and they are in desperate pain and we might try to help but the blunt truth is that our systems can brutalize and damage people further. It’s an unpleasant thing to think and to write but it is sometimes true.

A simple example is children who are sexually abused. We know that these children are much more likely to: develop an eating disorder, self-harm, drop out of school, use alcohol and drugs, have violent relationships, end up in the psychiatric system and get a diagnosis of borderline personality disorder, which, until fairly recently, was seen as ‘untreatable’. Now, if you get a BPD diagnosis, you might get some form of help, though the cuts are wreaking havoc, frankly. But the thing is, for some people BPD is a really bloody awful diagnosis to have – think of it, a label slapped on you which tells you your very personality is deficient. I can’t say I’d be thrilled. But if you are a person who has been sexually abused and who has had lots of bad things happen to them as a result because your attachments are ruptured and you find relationships hard and you feel ashamed and guilty and worthless and you take drugs to numb those very painful feelings, you may well not get the help you need, no matter how much you ask for it, because, unless you have a BPD label, you might not be seen as ‘ill’ enough. So what’s the message mental health professionals give people? ‘Get worse, if you want any help. Show us how desperate you are for help.’

Our system, dear reader, is flawed.

But of course it’s more fundamental than that. As psychologists, my colleagues and I are highly trained. Many of us have three degrees; some four or five. We are trained researchers and clinicians. We understand health but we could probably hold our own in some areas of sociology as well. I lecture trainee clinical psychologists on the topics of social context and race and class and sexuality. We are highly skilled people, often with vast amounts of knowledge at our fingertips. We know the causes of inequality and emotional distress; we know that intervening early is more useful than doing so later on and we tend to have the networks and the credibility to use that knowledge for social good.

Unfortunately, for most of the past 100 years, we haven’t. It wasn’t psychology which campaigned for the civil rights movement; it wasn’t psychology which rioted at Stonewall. On the contrary; we were too busy being involved in the eugenics movement and ‘treating’ people for being gay, which was classified as a mental disorder. More recently, we have had the dishonour of being complicit in torture. My profession does not have a good record when it comes to fighting for the rights of the oppressed, the marginalised and the dispossessed. And even now, knowing the crimes that were committed by our predecessors, many of us are content to sit in our consulting rooms and our ivory towers, working with the tiny proportion of people who come through our doors. I don’t know if you have ever tried to access NHS psychology but it is not easy. There are too many people in pain and too few of us to be able to provide them with what they need. I have the luxury of being able to see people for six months at a time if they need it; maybe more. Many people I know have nothing like that flexibility because their resources are so stretched but ultimately it’s our patients who draw the short straw.

My job is full of ethical dilemmas. Do I see the lonely old person because seeing me is the only social contact they have and because it lifts their mood slightly? Or do I discharge them because I am not ‘doing psychology’ with them? I’m not sure what ‘doing psychology’ is, really – as far as I’m concerned, most of my job is simply talking to people and trying to understand their situation and how they came to be in it and trying to fathom a way we can help them change it. Sometimes we can’t change it but that doesn’t mean there is no value to my input. I can’t just discharge someone sad and lonely without any follow-up but other agencies are drowning in referrals and their waiting lists would make your toes curl. But I can’t see people unless I can justify my involvement and sometimes it is hard to do that when you are the only psychologist covering a massive borough and sometimes I have to, with regret, discharge them and hope I have done enough.

But there are the bigger dilemmas. Make no mistake – I earn my living because other people are in emotional distress; because life has battered them and they cannot cope. You may say that I am doing a ‘good thing’ by doing what I do and that I must be a ‘good person’ but, believe me, there is very little about me that is noble. I care about my work and about my patients but the fact is that the day we manage to eradicate inequality, oppression and societal violence is that day many of us will be out of a job. Of course, given our current policies, that day isn’t coming anytime soon, but that in itself is a concern.

I see my job in the way I see a charity. It exists to fill a gap. If a charity is effective, at some point it should cease to be necessary because the gap has been filled by advances in policy and practice and it should close down. If I and my fellow psychologists were doing what we should be doing – focusing on preventing sexual violence, war, substance use problems, torture, racial and gender inequality, homophobia – we would, hopefully, run ourselves out of jobs at some point. That would be a good outcome, societally. A world in which you don’t need mental health professionals is a world I would like to live in. But we don’t do it. We don’t fight the causes; we firefight the dreadful consequences. And the effects on us are terrible. Health professionals are prone to all sorts of mental health problems. And why wouldn’t we be? Imagine spending forty hours a week hearing of others’ pain and distress. Imagine doing that for forty years. Imagine what that does to your view of humanity. Imagine what that does to your relationships. Make no mistake: our jobs can destroy us.

So, in fact, our lack of action when it comes to dealing with the root causes of emotional distress serves no one. It doesn’t serve those who continue to be marginalised, oppressed and victimized. It doesn’t serve the people around them. It doesn’t serve us as professionals. It doesn’t serve society. It simply perpetuates the damage and the despair; it keeps rotten systems alive and it maintains a steady flow of people through our doors for decades to come.

It is an outrage and we should be ashamed.

On five more years of a Tory-led government

As an NHS employee, I’m meant to have been in purdah since the dissolution of Parliament. I probably didn’t do purdah very well – people like me tend not to. Now the election is over I assume I can say what I like (though obviously nothing I say is ever anyone’s view but my own).

I began working in the NHS four years ago, when I started doctoral training. Before that I was on an NHS placement as part of my Master’s degree. Before that I worked for a charity and before that in a specialist NHS personality disorder unit (the only one of its kind in Europe).

In my non-work life, I am a charity trustee. It’s a young charity – only five years old – and it aims to help those in poverty. We give grants; we fund a food bank. It horrifies me how many people use that food bank.

I am, as you will gather, a believer in collectivism, in socialism, in giving a damn about your fellow citizen. So obviously I have watched the dismantling of the public sector (and health and social care in particular) with a growing sense of fury.

I have seen people who have been homeless for years, despite having children, because they were declined for re-housing. I have seen people fall between two boroughs and there be a tussle over who needs to help them (and pay for that help) because of the way services are now commissioned. I have seen people with no food in the cupboards and no money to buy any. I have been told that Social Services ‘can’t see anyone until the new financial year’ because there’s no money. I have been told that unless you can pay £18 an hour for care you can’t have any because the budget is all gone.

And these are just my stories. My colleagues will tell you of people who can’t come to clinics because they can’t afford the bus fare; of people whose HIV treatment is ineffective because they can’t buy enough nutritious food to maintain their immunity. People are dying every day because of these gaps in the system, and that’s without taking into consideration the massive increase in suicides.

I confess I wasn’t that hopeful that the manifesto pledges related to mental health would come to much but I did think that a Labour government would at least turn the tide and end this dreadful privatisation and commodification of healthcare. I felt pretty positive – not an outright win, but maybe a Labour/SNP coalition which scrapped austerity (and Trident with it). The BBC coverage last night was as patronising as ever and I soon gave up, although not before I had seen that awful exit poll. I went to bed, hoping it would be ok.

It wasn’t.

In the office today, all the talk is of the end of the NHS, the collapse in living standards, the impossibility of being able to find affordable housing. On Twitter, it’s the end of the union, the lurch to the right, the need for electoral reform. And in truth, I feel absolutely broken.

In 2010 I had some hope that the Lib Dems would moderate the Tories. They didn’t, or, at least, not enough. Mental health services have been battered while the need for those services has shot through the roof. Our services are being crushed in a way that physical health services are not. I work with older people, already marginalised and seen as lacking value – the rhetoric is ‘get treatment so you can get back to work’, but someone who is 86 with dementia probably won’t be doing that, and in this political climate their value is constantly questioned because there’s no economic case for looking after them well – and sometimes it’s difficult. All mental health is sometimes difficult, as all health is generally – we tend to see people who are ill or in pain and we try to help them. Sometimes we can’t – I can’t magically take dementia away, or stop you from getting older, much as I sometimes wish I could. But I try to do what I can to make life that bit less hard. All my colleagues do – whatever lies you are told, believe this: some of the kindest, most decent people I know work in health and I am proud to know them and have them as my colleagues. Believe this too – we can’t create a beanstalk without beans. We can’t help you without the necessary infrastructure and support. Some of the people I see will get better; some won’t; some will learn to manage better; some won’t. We can’t work miracles. But I love my job and my patients and I do my utmost, as do my colleagues, to do the best we can for them all.

But we can’t do it alone. We need politicians to support us and our patients. We need them to understand the causes and impact of poverty; to understand that living in crap housing on a volatile estate is bad for mental health; that caring for parents and partners places untold strain on people; that people with dementia are entitled to as much help as people with cancer. We need them to understand that we can’t look after more people properly unless we have more resources. We need them to understand the feeling of helplessness that can arise when you go to see someone and you can’t do much for them, because they need a social care package but you can’t get one because there is no money and all you can do is watch them cries tears of despair and try to support them in any way you can, no matter how feeble your attempts to do so seem.

This morning, I can barely contain my fury and my dejection. I don’t know what health and social care will look like in five years but I don’t believe it will be good for staff or patients (and I’m going to say quite bluntly that if you don’t take care of your staff they will not be able to take care of your patients. We’re sort of vital for good outcomes, in the same way that teachers are vital for good education).

So desolation is the word of the day, it seems. But the good thing about fury is that it can be harnessed. They only win if you let them. So let’s fight them – their injustice, their self-interest, their demonization of the poor and the vulnerable. Farage and co might question my Britishness (what with being Asian and all), but, dammit, I refuse to live in a Britain which screws the many over for the benefit of the few. I am very fortunate to have some good friends and colleagues who believe in the same principles as I do and who are willing to speak out against it. So we recover from the shock (sadly no awe) and start again. We write and we protest and we ask awkward questions and beat our little fists. And it might not be effective, but that’s not the point. Because what a certain breed of Tory fails to realise is that some people care more about societal good than their own back pockets.

So. A principled, angry army of psychologists, medics, liberals, lefties and assorted others is mobilising. I don’t know what it’s like to be at the bottom of the pile, but, for all those people who are frightened of what the future holds, know this: there are people out there who care and who are committed to doing our best to fight with you, because it is the right thing to do. We might not win, but we certainly won’t go down without a damn good fight. And if we lose, we lose together. Because that’s all that matters – that we stand together; that we support each other and that we try to create a fairer, more equal society. You are not alone.

On Nick Clegg’s promises of extra funding for mental health

This piece was originally written for the press and is due to be published later this month.

With a little over seven months until the General Election, all parties are gearing up to charm the electorate. A repeat of the hung parliament of 2010 is unlikely to be the ambition of any of the main parties, and it certainly doesn’t seem to have been terribly popular amongst the electorate.

Thus it was that I followed Nick Clegg’s speech on mental health provision at the Liberal Democrat Party Conference with interest. Having spent several years working in a range of mental health services, I applaud the fact that it is clambering up the political agenda, if rather more slowly than I would like. On the face of it, then, the content of his speech was positive: 75% of people referred for difficulties such as low mood and anxiety will be seen within six weeks; all those referred for psychosis will be seen within two weeks, funded with £120m over two years. Mental health charities were enthusiastic, but a closer look reveals rather more.

Nick Clegg’s party has been in government for over four years. In those four years it has privatised healthcare, including vast swathes of mental health. It has drastically reduced funding for social care and support services. It has slashed Housing Benefit and, courtesy of Workplace Capability Assessments, terrorised those on benefits. Its policies have led to the poor and the disabled being demonised by the media and the public at large. It has cut the number of beds available for people with mental health problems by 10%. It has presided over people being ferried halfway across the country for acute admissions because inpatient units are at breaking point. It has cut funding to such an extent that recruitment has been frozen. In my own profession of clinical psychology, this is especially evident: I know of services in which the waiting time for an assessment is nine months. Austerity is bad for our mental health: our waiting lists are increasing at exactly the point at which our capacity is reducing. Nick Clegg’s government has been implicated in every bit of this wretched tale. In short, it has decimated the mental health system and ridden roughshod over those who require it.

Having spent four years watching this sustained assault on mental health services, I see no reason to be enthused. Clegg’s proposals relate to waiting times; nothing has been said about how clinicians are meant to meet those targets without a sustained recruitment drive. We have limited capacity; we can’t simply see more people because Mr Clegg tells us we ought to. We can’t do more, with less. Mr Clegg is no fool: he is well aware of this. But he is also leader of a party which is likely to be decimated at the coming election. One can hardly blame him for trying to appeal to the electorate. I just wish he wouldn’t make promises which he will break to a group he and his peers have systematically persecuted over the past four years.

On the impact of cuts in MH services and the myth of ‘parity of esteem’

This piece was originally written for publication in the press and is due to be published towards the end of the month. I have taken the liberty of reposting it here.

When I’m not writing, I work in mental health. Mental health has always been the poor relation to physical health but it is clear that the disparity between the two is increasing exponentially. Although the public sector as a whole has had to tighten its belt since the economic crash that we, the public, didn’t cause, the NHS has been particularly vilified and, courtesy of the Health and Social Care Act, effectively privatised. Our budgets have been slashed and our workforces depleted. Although there have been some cuts in physical health, the fact remains that no government which aims to be re-elected is going to restrict the care given to people with cancer or heart disease. In the great hierarchy of illness, these people are top of the tree. In contrast, the people I work with, who are amongst the most vulnerable in society, are seen by successive governments as unworthy and ignored.

Since 2005, 30 000 people have lost social care support. 2000 mental health beds – 10% of the total – have been lost in the last two years. I have worked in wards which are running at 120% capacity, so God help you if you require an emergency admission, because it’s quite likely that you’ll be shunted off to a hospital several hundred miles from your home and your family. People with mental health problems are often already stigmatised and may lack social support. To ferry them across the country, effectively cutting off contact with their family and the professionals who know them is an outrage. Imagine the same happening in physical health. Imagine being told that your sibling, who had had a stroke, was being sent 250 miles away because there were no beds any nearer. You wouldn’t stand for it. I wouldn’t stand for it. But we make those in mental health services stand for it and because they are often unable to advocate for themselves it is allowed to continue.

Services aimed at young people have also seen swingeing cuts. Recent figures indicate that staffing levels in these services are only half the recommended level; as a result hundreds of under-18s are being treated in adult psychiatric units. Psychiatric wards can be confusing, frightening places even for adults. They are entirely inappropriate for children. Such an event should take place only in an extreme situation; for it to occur routinely is reprehensible.

In January Nick Clegg declared that there was too much ‘ignorance, prejudice and discrimination’ directed at people with mental health problems. He said that it was imperative that services were valued equally. As I write, it is being reported that mental health services have been asked to cut their spending by 20% more than physical health services, despite the fact that mental health services deal with 28% of the NHS disease burden whilst existing on 13% of the budget. Our services are crumbling; our clinicians are burning out. Lives are being put at risk and as things stand, we are hurtling towards a mental health crisis of gigantic proportions.