The language of mental health: am I a person or a service user?

I wrote a bit about the language of mental health before. Surprise, surprise, there is no getting away from its complexities as seen in recent posts. So, this spurred me to go back to basics and look specifically at the language around the person and mental health. At the end of the post I’ve added our first blog poll to find out what you think.

Step 1 of seeking help and support around mental distress usually involves going to see our GP. At that point we are clearly regarded as the doctor’s patient – the language is so engrained that we barely question it. But that doesn’t mean that a) we like it, or b) we consider ourselves at the start of a medical “journey” - whatever diagnosis that we might have left the surgery with.

Before working in the field of mental health, I didn’t consider the terminology that much. But now the language around the person and mental health is very much to the forefront of my mind. It’s there every day I’m at work (and often outside – because the language of mental health is actually everywhere). At work colleagues and I regularly engage with “people in contact with mental health services” to find out what kind of services they would like. But what do we call them? We think we need some way to distinguish these people from everyone else. And we worry that we might offend or label people unintentionally, yet at the same time we want to make sure we are understood.

Patient is one word. It’s easy and everyone recognises it. Service user – a term increasingly common in the spheres of government, health, social care and even the voluntary sector – is just two. My feeling is that it is increasingly reviled by the people it is used to describe (which is all of us in effect). It hints at other negative terms such as drug user. The words don’t refer in any way to mental distress... the user could be accessing refuse services as far as we know. Other more acceptable descriptions are longer winded. What about – a person with lived experience of mental distress for example? But in a world where language is shortened repeatedly into – OMG – acronyms, never mind just quicker and shorter words.... have we all just become too lazy?

This topic is by no means new, though it certainly has not been resolved – not in Powys or Wales anyway. Research in England from 2010 reported on people’s preferences in The Psychiatrist, journal of the Royal College of Psychiatrists, at the time, and perhaps surprisingly “patient” was actually voted all out favourite term.

According to the Open University, “certain terminology should be avoided, such as the use of labels referring to one aspect of a person, such as calling them 'a schizophrenic', as well as the casual use of words such as mad or crazy. The way in which these terms become accepted as normal conversation is very damaging.” And yet several prominent and very successful organisations have now adopted previously stigmatizing language in their names, eg: Mad in America, and Madness Radio. 

Acceptance, humour and even rebellion are a large part of what has become known as the psychiatric survivor movement – originally the more radical and political side of the mental health arena but now seeping into the everyday at an ever greater pace. A forum member called Apotheosis created his/her own comic definitions, (more general than just about the person but relevant nevertheless), on mentalhealthforum.net – read them and make up your own mind!

So – to the poll. It’s very simple – just choose your favourite term – if you can find one in the list – and let us know. If none of these terms fits the bill as far as you are concerned – that’s fine – either post a comment or email pamhinfo@pavo.org.uk with your suggested alternative. We really would like to know what you think and how we should be referring to ourselves.

What should we call someone who has contact with mental health services?

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Unconventional Wisdom: Dementia and Mental Health - Uncomfortable Bedfellows?

I attended an event last week - "Creating a Dementia Supportive Community in Brecon".  The initiative is being driven forward by passionate people; individuals with experience of dementia and those close to them, alongside staff and volunteers from Alzheimer’s Society.

The aim of the group is clear – to increase our awareness of dementia and change the way we think, talk and act.  You can access the notes I made from the day here. If you want to find out more or make contact with the group let me know..    

I am very fortunate that my role within Powys Association of Voluntary Organisations (PAVO) allows me to attend such inspiring events.  I learnt more about dementia from a husband and a daughter, willing to share their stories with us at the event; than I ever had from any reading on the subject.

As a manager of a mental health team in PAVO and as someone who has had only very limited personal experience of dementia, my knowledge and expertise of dementia was and still is very limited.  Over the last three years the topic is something that has loomed over me, I have to admit, like a big, dark, scary cloud (I'm pretty used to dark clouds living in Powys, I seem to have spent yesterday under one).  I have been under various pressures to agree that dementia sits under mental health, but I have always thought that this needed more thought and debate.  During this time, with the little knowledge I did have, my mind has been screaming that dementia does not sit easily within the field of mental health.  

So this worry has been with me for many years, and despite a number of attempts to get people who know a lot more than me to engage in this debate, I have failed.  So inspired by Thursday’s event and armed with a tiny bit more knowledge, I am going to take the leap and try and start a debate.

Dementia and Mental Health - Uncomfortable Bedfellows?

Dementia is a term used to describe more than one progressive illness that structurally and functionally affects the brain,  For example Alzheimer’s disease, the most common type of dementia, is brain damage caused by the actions of proteins. Vascular dementia is the second most common form of dementia and is brain damage caused by a disruption in the oxygen supply to brain.  Dementia symptoms manifest themselves as loss of memory, mood changes, and problems with language, reasoning and decision making. 

I have been around long enough to suspect that the evidence and ideas surrounding dementia and reported across the mainstream are not as certain as they are often portrayed but what I am told makes me understand dementia as a term that describes a number of illnesses caused by progressive brain damage. 

Things are not that well understood in mental health.  The conventional idea underpinning the mainstream understanding of mental health is one of mental illness and the various supporting theories that look for something wrong either structurally of functionally with the brain (e,g, searching to find evidence for a chemical imbalance).  However many would argue against this conventional view and support a theory that conditions that are diagnosed as “mental illness” are not illnesses at all, but a response to trauma and adversity.  You can watch Eleanor Londgen explain this idea based on her own experience of mental distress here or listen to a recent debate on the Today Programme here.  My recent blog, Unconventional Wisdom?  Are the mainstream ideas underpinning mental illness diagnosis as sound as we presume?, begins to explore this debate.

We do know that there are some illnesses that cause symptoms similar to those experienced by people with a mental illness diagnosis.  For example, Acute Intermittent Porphyria, the disease famously linked to King Gearge III.  We may, in the future, find evidence for other diseases like this that cause mental distress.  Thomas Szasz would argue that if and when we do, that doesn’t support the idea of “mental illness” but just that we understand better another illness (sorry that's another debate ). 

But we do have, within the mainstream field of mental health, a plethora of conditions and disorders that are diagnosed by psychiatrists, as “mental illnesses” using the Diagnostic and Statistical Manual of Mental Disorders (DSM-5).  The diagnoses are based on observation and reading of people’s emotions, behaviours and actions.  For example, Schizophrenia is characterized by delusions, hallucinations, disorganized speech and behaviour and other symptoms that cause social or occupational dysfunction.  Internet Gaming Disorder  is diagnosed when internet game play is seen as compulsive, to the exclusion of other interests, and where persistent and recurrent online activity results in clinically significant impairment or distress. 

So my debate starts (finally I hear you cry) with two questions:

• Does it make sense to place dementia, illnesses caused by progressive brain damage, with mental health, a group of conditions and disorders that may be caused by illness or may be a natural response to our life experiences? 
• Does it make sense to place dementia, illnesses caused by progressive brain damage, alongside mental illness diagnosis, diagnoses that some people believe we can "throw off", so to speak, believing that what is experienced is not an illness but a natural response to life? 

Of course I can see that experience of the disease dementia can cause serious stresses and strains on our mental health.  So people may turn to the field of mental health for information and support with this.  For example, the man talking at the event last week explained “sometimes I go days without being able to put two of my own thoughts together, I am constantly focused, 24 hours a day, 7 days a week, on my wife and making sure she is safe and as content as I can help her be, but it is at times like this that I experience symptoms of depression”. 

People with dementia are often (and as I understand it sometimes controversially) prescribed “anti-psychotic” medication.  In dementia I assume they are prescribed with the underpinning idea that they may help control behaviour and emotion, where as in mental health they are prescribed with the underpinning ideas that they help to address the "mental illness" (e.g. a chemical imbalance).

So over to you.  It will be a very limited debate if you leave me here, in all my uninformed glory.  I really hope you are willing to try and help me.  Tell me what you think, does this make any sense to you, have you been struggling with any of the same questions? What links and differences do you see?  How would you answer my questions and what questions do you have?    What else do I need to know, what information do you think I need to help me with this debate? 

R D Laing pops up again

“Madness need not be all breakdown. It may also be break-through. It is potential liberation and renewal as well as enslavement and existential death.”  R D Laing, 1927 - 1989

Yesterday morning I heard the Scottish psychiatrist’s son, Adrian Laing, speaking on BBC Radio 4’s Saturday Live programme (about 30 minutes in if you listen again). He recalled life with his father, a bittersweet combination of experiences also documented recently in The Daily Telegraph, and then outlined his participation in one of Laing’s more unconventional therapies – a “rebirthing”.

The story reminded me of a comment in Laura’s recent post on Thomas Szasz, where a reader made the link between Szasz and Laing. The Anti-Psychiatry page on Wikipedia pulls them both into the same camp, but as Laura pointed out – Szasz was not anti-psychiatry, it was the coercive nature of psychiatry as practised that he opposed. Nevertheless, the two psychiatrists are often lumped together in the political debate over psychiatry, and in pushing the view  “that psychiatric treatments are ultimately more damaging than helpful to patients”.

The debate, which was particularly vocal in the 60s and 70s, is regarded by some to have been “of its time” and no longer relevant. After all, mainstream psychiatry (relying heavily on drugs in its attempts to treat what are regarded as medical problems) seems to rule the roost, certainly in the developed world. However, it appears as if the debate is gaining renewed momentum of late...

I unexpectedly discovered a copy of Laing’s “The Politics of Experience and The Bird of Paradise” on a bookshelf here at home. (It’s not mine – G is also more well-read than me!) Yesterday after listening to Adrian I read the chapter on “The Schizophrenic Experience.” Here are a couple of, what I believe, are relevant quotes:

“It seems to us that without exception the experience and behaviour that gets labelled schizophrenic is a special strategy that a person invents in order to live in an unlivable situation.” (Following research studies made by Laing and two colleagues. His emphasis).

“’Schizophrenia’ is a diagnosis, a label applied by some people to others. This does not prove that the labelled person is subject to an essentially pathological process, of unknown nature and origin, going on in his or her body.”

Dr Joanna Moncrieff, a practising psychiatrist and critic of pharmaceutical drugs, said that “I was reading Thomas Szasz and R.D. Laing when I was at medical school – they were the only ray of interest I could find in the subject area.” With like-minded colleagues she set up the Critical Psychiatry Network which aims to debate issues such as “scepticism towards the evidence base, the biological basis to psychiatry, the efficacy of biological treatments, and an objection to the emphasis on coercion and medicalisation and the issues of social control.”

So... the debate does seem to be very much out there and current. What do you think?

PS: You can watch an intriguing 1989 Channel  4 documentary on R D Laing here. It’s 1.5 hours long (but absolutely worth it), so make sure you are sitting comfortably...

Hope blooms out of depression

Last week my sister-in-law told us that she had successfully completed Level 2 of a creative floristry qualification, and she spoke so passionately about the impact that learning her new skill had had on her wellbeing that I asked her to write a piece for the blog. Thank you Linda! 

"I first started suffering from depression when I was 17. I feel the reason for this was partly genetic and also the fact that I was developing a tumour on my pituitary gland which was not diagnosed until I was 24. I am from the generation where educating girls was not a priority. All that was expected of me was to get married and have babies! My last 2 years at school were not happy - my older brother went to the same school and also my very gifted cousin who is a concert pianist. I was constantly compared to them both. 

I grew up feeling I was not particularly good at anything despite knitting and doing crochet for Harrods and Browns. I knew I had to be perfect but due to my total lack of self esteem I took no pride in the fact and felt so what, anyone can knit or crochet! These feelings stayed with me most of my life and I suffered some very severe bouts of depression that meant I needed to be hospitalised.

I was told my handwriting was nice. I could write poetry. I have bought up two children who are nice stable adults but still my lack of self worth persisted. I constantly compared myself to other people - they were all more intelligent than I was, they were nicer than I was etc etc etc!

In October 2011 my husband paid for me to do a flower arranging course for my birthday. This was something I had wanted to do for at least 30 years but there again my negative attitude stopped me. My first college lesson fell on my birthday and to say I was terrified of going is putting it very mildly. I begged my husband not to make me go, and he actually had to take me and it was just like my first day at school. I loved it once I started.

At the end of the six weeks I was really sad that the course had ended although I still felt I was not particularly good at it. My tutor asked me to stay behind after the last lesson and told me they were now taking Disability Living Allowance as a benefit and why didn't I enrol on a qualification course. My answer I remember was "what, me?"

I have a very complex medical history and am in a lot of pain but my tutor convinced me that she would help me as much as I needed. I enrolled in September 2012 at level 1 in NAFAS (National Association of Flower Arrangement Societies) qualification in creative floristry and my Thursday at college, although I found it difficult pain wise, soon became the best day of my week. I passed my Level 1 at Christmas 2012 and to my utter surprise people were actually wanting to buy my Christmas wreaths! My final level 1 assessment was a hand tie for a bride with white roses and tiny pearl beads bound with antique lace and secured with pearls. I achieved a grade 3 - the highest grade! Way hay! I thought to myself I can actually do this.

The course involves a massive amount of course work and I hated studying at 18 let alone at 60 but I have come to enjoy the business side of floristry. I embarked on level 2 in January 2013 and finish at the end of June. It has become very challenging now, both the practical and theory tests my brain somewhat. I had my practical assessment for level 2 last Thursday and chose to create a heart shaped wreath and passed at the highest grade again. The comments that were made on my practical work were that it was highly saleable and showed a high standard of creative talent. This is me I thought, I am now qualified enough to work in a florist’s and beginning to get more orders from family and friends. I love selecting my flowers, and I know my colour co-ordination is good (yes, I did say good!) and I love seeing what I can create from them.

Not only do I love my floristry it has made me look at all the other gifts I have been given. I believe that not many people are creative enough to work for Harrods. I am a nice, reasonably intelligent person who dresses well and am quite articulate. It is never too late to follow your dream whatever the obstacles you may have on the way. There is always a way around things!"

Who will sponsor mental health research?

The good thing about blogging on mental health is that everyone looks out for topics for you! Last week a colleague told me about a new mental health research charity – it’s called MQ and wants to be “the Cancer Research UK of mental health research.” The Wellcome Trust has pledged £20 million to pump prime the charity’s activities, and the first MQ Fellows programme has been announced. 

Many people seem to be aware of the huge amounts of research work being done by cancer and heart charities into their specific areas of interest (let’s face it, we have either walked ourselves or sponsored family & friends to raise funds), but what about mental distress? There seem to be so many unanswered questions (not least those recently debated here about the validity of a mental health diagnosis), so surely there would be a corresponding numbers of projects?

Well, according to the Mental Health Foundation – “Mental Health Research investment is disproportionately low in relation to the relevant disease burden.” 

The charity Mental Health Research UK  has an innovative idea – but it too depends on a sponsor. One of the co-founders of the charity, “the first UK charity dedicated to raising funds for research into mental illnesses, their causes and cures,” has set up a fundraising blog called The Backpacking Barrister. Lawyer Dr Laura Davidson is currently working in Rwanda, “assisting the government with its mental health policy and legislation.” She writes powerfully from her experiences as a lawyer about her motivation for setting up the charity and the blog, describing a British system “of trial and error…. and legislation which permits the forcible medication of those detained in psychiatric hospitals means patients often feel like guinea pigs.”

The MHRUK website has links to the research projects that the charity has funded, including “Development and evaluation of an online intervention for the treatment of depression in university students” by Bethan Davies at Nottingham University.

What areas would you like to see new research focus on? Maybe if we had some good ideas we could pass them on to that new charity MQ and they could start spending the £20 million....?