What does a mental patient look like?

This week two large corporations have been forced to remove Halloween costumes based on 'mental' or 'psycho' patients. Following a huge outcry on twitter and other social media, Asda and Tesco both removed these offensive costumes.

My initial reaction was one of complete disbelief. I couldn't fathom how such an idiotic and offensive decision could be taken today. But actually perhaps it isn't that surprising. On the face of it we are a accepting, politically correct society. We don't allow racism, we have laws against discrimination and we have certainly made significant progress on sexism. However, mental health still teeters on the line between offensive and acceptable humour.

Whilst outright discrimination may be taboo, there is an underlying sense that purveys humour and language that speaks of mental health issues in terms that are stereotypic.  'Crazy', 'psycho', 'going postal', amongst others, as well as a common assumption that extreme violence must mean an underlying mental health problem. The media often makes mention of the existence or not of mental health issues in an assailants history. Between the lines, although not said, we are supposed to assume that there must be a mental health problem to explain the atrocity. Recent cases in the US, for example the navy yard shooting, do exactly this.

I am not asserting that mental health conditions do not play a part in many violent crimes, but statistics show that people with serious mental health conditions are much more likely to be the victims of violence than the perpetrators. And yet films, books and TV continuously portray the bad guy with mental breakdown or condition. Some people with mental health conditions commit violent crime, but so do many men, many single people, many blonde haired people. To assume on these grounds would be seen as ludicrous.

There is a fear of mental health, but also an attitude of 'its only a joke'. It used to be acceptable to make jokes about the Irish, women, or the physically disabled. This attitude allowed discrimination and prejudice to pervade society and effect the treatment of these groups. These costumes passed through buyers and managers, they were deemed acceptable because of this humour rule. But this attitude causes serious damage to the view and treatment of people with mental health issues. Not on the surface, deeper; in throwaway comments, assumptions made about friends and employees. It makes people with mental health problems less likely to speak out in case they are seen as 'mad'.

The positive is the outrage, although I was deeply offended, I was also cheered with the outrage of others. It led to an opportunity to talk again about the stigma of mental health and photo campaign by Time to Change called "this is what a mental patient look like". And open conversations about mental health are always a good thing

One year on

This weekend is my daughter's first birthday.  With all the celebration there is another side to this important date for me.  The perinatal mental health team only looks after women who are pregnant and up to the first year of the child's life.  So I am bring discharged to the back to the community mental health team.

This handover is somewhat of a double edged sword for me.  On the one hand this is a good thing, it means that I am better, well on the way to being stable and well again.  However the perinatal team have been the the very best mental health service I have ever encountered, in fact possibly the best NHS service I have ever used.  They have kept all appointments, visited me regularly, looked after me with care and sensitivity during my inpatient stay.  Between them they rebuilt my confidence, got me back to work and helped me rebuild some normality in my family life.  They have laughed with me and cried with me, and got me psychological therapies that I have been waiting for for over three years.  I cannot express in words how wonderful they are and how grateful I am to them and all they have done for me and my family.

On the flip side community mental health services have been somewhat hit and miss.  There was the time that I was first referred to mental health services and spent months being pushed back and forward between different services- one claiming that I was too unwell to be seen by then and the other saying I wasn't ill enough.  I was referred twice for CBT and therapy and was lost on the list when the service reshuffled from South to South East to East.   At 32 weeks pregnant I changed Psychiatrist (after another reshuffle) and it was only then that I was referred to perinatal (despite the guidelines stating I should have been referred immediately).  And finally there was the community psychiatric nurse (CPN) who was brushed off my comments about hallucinating (it would cause a lot of paperwork) and reported me (wrongly) to social care against the advice of my perinatal CPN and psychiatrist.

In many ways I will be glad that this 'year' is over.  It is been the hardest I have ever known and has tested the limits of my mental and emotional strength, as well as my relationships with family and friends.  What I do know is that the year wold have been made much worse without the wonderful work of the perinatal team at The Mount.  They do amazing things every day with very little in the way of resources.  In the whole of Yorkshire there is one mother and baby unit which has five beds.  Five.  The next nearest is Newcastle of Manchester.  They didn't just hand out pills and feed me.  They nourished me, they supported me and they gave me the confidence to drag myself out of depression.  Mental health services are often described as the 'Cinderella service' and if that is true they are the fairy godmother, because they made so much our of very little. If only all mental health services could be so good.

Medication's what you need...

"Just keep taking the pills" is what my Dad says to me regularly.  Few people are surprised that I take medication for my Bipolar, it seems the obvious option.  Why wouldn't you?  If your brain chemicals are unbalanced, simply straighten them out with some drugs- balanced brain equals normal life.  It isn't quite that simple however, firstly because there are no specific drugs for Bipolar Disorder or in fact many of the psychotic mental illnesses including Personality Disorders and Schizophrenia.  In fact many, if not all the drugs used to treat and manage these mental health conditions were originally developed for other uses. Anti-convulsants, developed in the main to treat epilepsy, are still the most commonly used drugs used to treat Bipolar Disorder.  Medication for Bipolar Disorder is often a case of trial and error, and many sufferers will try several drugs and often end up with a combination of drugs to control their symptoms.  The most commonly used and oldest drug is Lithium, which is in fact an element rather than a compound.  It was first discovered to have behavioural effects on subjects in the 1950s, and yet we are still not entirely sure how or why it works for Bipolar Disorder.  And this is the same for many of the drugs used to treat Bipolar and other mental health disorders.  We know they work for some or all symptoms, for different people, but we are still unsure why.  What all the drugs have in common is that they all come with pretty significant side effects.

Side effects of drugs are common place, nearly all prescribed drugs have some other, often unwanted or unpleasant effect on the taker.  However the majority of us will only take medications for short periods of time, and for the most part side effects are manageable or avoided. Most people with Bipolar disorder will take a combination of medications their entire lives, from the point of diagnosis.  For me that was when I was 29.  So I potentially have another fifty years of medication to control and manage the symptoms of my condition.  It is the side effects and the impact they have on a sufferer's life that lead many people to stop taking the medication.  That might sound crazy (ha, ha!) to most people, to stop taking a drug that prevents significant mental illness.  But many of these drugs are physically damaging and cause side effects that day in day out are difficult to tolerate.  I can only talk of my personal experience, but three years in I am struggling with balancing the side effects with the benefits of the drugs.

On the surface many of the side effects may seem inconsequential, but added together, over a period of time they become frustrating.  I take two drugs at the moment, the first lithium which I started taking after my diagnosis, and venlafaxine, which I began in hospital after my daughter was born.  Lithium is my mood stabiliser, there is no set amount prescribed, as different people metabolise it at different rates.  In fact the line between therapeutic and toxic is narrow.  Lithium toxicity can cause kidney and liver damage, as well as thyroid disease.  For this reason I have regular blood tests to check my levels and my organ function.  It is unlikely I will take it for my whole life because of the damage it does.  It also make me very thirsty, because it is a salt; it makes my hands tremor slightly, especially in the mornings and itchy skin.  Venlafaxine is an antidepressant, it causes me to be hungry all the time.  By that I mean I eat a large, healthy meal and an hour later I am ravenous, a real craving hunger.  This means that if often causes weight gain.  It makes me sweat more (nice!), have very vivid and strange dreams, and if I am even an hour late taking it I get dizzy, brain shocks and feel sick.

These are manageable, except at the moment I am trying to lose weight.  My drugs mean the only way to do this is to be really, really hungry most of the time.  It is hard to concentrate when so hungry!  I am eating enormous amounts of fruit and low fat yoghurt, but it doesn't touch it!  These drugs meant I couldn't breastfeed my daughter, couldn't even really consider it.  I have to be very careful with alcohol, I get drunk much quicker and if I get too dehydrated I can go into lithium toxicity.

Soon I will hopefully be reducing the venlafaxine, and perhaps even consider a change all together.  But unfortunately for me most of the drugs come with the side effect of weight gain.  Which might seem a vain worry, but when you are overweight already, facing a lifetime of these drugs it becomes more than an irritation and yet another kick in the teeth from this diagnosis

What's in a word?

Do you consider yourself to have a disability? A simple question for most people, it appears on most equality monitoring forms.  From dentists to libraries, sports groups and employers, everyone wants to know your race, gender, sexuality and if you consider yourself disabled.  I imagine most people find this question straightforward, its obvious right?  Well, I always hover over that question, my pen moving from yes to no, my mind contemplating what it is exactly I feel, do I feel disabled? And more importantly, what will the impact be if I say yes or no?

Bipolar Disorder is, or can be, defined as a disability under the Equalities Act of 2010 (formerly the Disability Discrimination Act) if it impairs the sufferer in carrying out daily tasks.  For example getting dressed, interacting with people, making decisions.  But Bipolar Disorder is a broad diagnosis and so it must be evaluated for each person, it isn't enough simply to say Bipolar Disorder is a disability- it can be, if it effects an individual in a way that prevents them carrying out normal activities.  On that level then I am disabled.  There are periods of my life when I cannot carry out normal tasks, like dressing, or deciding what to eat.  Or even eating at all.

While logically I can look at the criteria for disability and read all the information provided by mental health charities about mental health disability, I find it hard to reconcile that with myself.  I don't feel disabled, I don't see myself as disabled.  But perhaps that is more to do with my perception of disability, or more likely connected to my need to be independent, to not need help from anyone.  Because that is the issue. Ticking that box, especially in the context of employment leads to the second question- do you require any assistance/help for your disability.  I am still coming to terms with the idea of asking for help, admitting that perhaps I can't do everything everyone else does without a little extra support. Disability for me means admitting that I need help sometimes, not something I find easy.

There is also an element of worrying about the consequences of ticking that box, of saying I am disabled.  What will an employer think when they see that, and worse that it is a mental health problem?  A probable assumption will be that I will have lots of time off, that I won't be able to handle stress, that I might "flip out". Technically employers aren't allowed to ask you medical questions until after interview, but they are allowed to ask the disabled question because it relates to interview. So what do I do- say yes and hope they don't just chuck my application in the bin?  Or no and worry that when it comes to the medical they don't question why I didn't say yes earlier?  I just can't believe that many employers wouldn't discriminate against a mental health disability.

Ultimately the problem with this question is that it is so closed.  A small tick box that requires a yes or no answer.  It doesn't allow for an explanation, all the positives that come from it, what I can do, as opposed to the things I struggle with.  Disability is a much bigger concept than a simple yes or no, it is a broad spectrum of identity, one that I am slowly beginning to accept applies to me.

Won't someone think of the children

Last week I was on Woman's Hour, well my experience was.  It was part of a piece on mental health and parenting prompted by a call from the Care Quality Commission and Ofsted that doctors and health care professionals treating parents with mental health conditions should automatically and statutorily refer them to social services.  The report states that children whose parents have mental health problems are often poorly supported and therefore susceptible to harm.  Mental health conditions are considered to be the same as substance and alcohol abuse and are recommended to be dealt with by social services in the same way.

This recommendation is ridiculous, dangerous and insulting.  There is already an obligation by health care professionals to report anything that they think my be a child protection issue.  This requirement will not help support children, instead it will isolate women right at the point they need help and to talk.  The fact is very few women, or parents, with mental health problems are a risk to their children. Unfortunately, the few terrible instances there are of parents (usually mothers) harming their children due to mental health problems are widely covered in the media.  The reality is that 1 in 10 women will suffer with postnatal mental health problems, but the numbers that will harm their baby are tiny.  However, many women with postnatal depression and psychosis are terrified of speaking out and telling someone how they feel, for fear that they will be deemed an unfit mother and the baby will be taken away.  This is far more dangerous for the mother and baby than the mental illness itself.  Putting a statutory requirement on doctors to report women for mental illness will surely just make women more afraid to speak out about how they are feeling.

After my daughter was born and I began to become unwell, the perinatal care team were excellent in their care for me.  They understood the complexities of postnatal mental health, monitored me, and asked all the right questions.  They considered me in no way a risk to my children.  However an inexperienced Community Mental Health Nurse, without visiting me or talking to me, referred me to social services.  The anxiety and stress this caused us was enormous, and social services agreed that I was not a risk to my family.  Social services are the demon child snatchers that people often portray, but until you have been there, considering the idea that your every parenting decision, emotional state, and love of your children will be monitored, it is difficult to understand the fear.  I have always had a good understanding of social care, I have worked with them supporting families.  But when I got that phone call, in the midst of my unwell mind, I was paralysed with panic and fear.  I had always worried that people thought I shouldn't have children, because of my Bipolar, and now it was going to be tested.  A quick conversation and the worry was over. There was nothing social services needed to do or could do.

And that is another issue.  After the shock and panic had subsided I asked for their help and support.  I was on the verge of being admitted into the Mother and Baby unit, my family could do with any support that could be offered.  Except there was none.  Social care couldn't do anything for us, we qualified for nothing.  My deteriorating mental health was not a factor in deciding support for our family, income and employment was.  Because my husband works full time is a reasonably well paid job (above national average, but still quite a bit below higher tax rate) we were entitled to no help with childcare for my son, no support for mu husband as my carer.  If he had not worked then we would have been entitled to much more.  One argument  for the automatic referral to social services is that children and families receive the support and care they need.  But unless there is a planned injection of money into social care services, this is not going to happen.  They are an overstretched service as it is, unable to support all but the families most in crisis, the ones where children are in danger of harm or neglect.  If you care for your children and are trying your best, but simply need extra help in coping they cannot help as they do not have the funds. Therefore the referral is a pointless exercise which will only lead to women hiding their feelings and worries through fear of losing their children.

And as to the categorisation with substance abuse, I find this insulting and a further opportunity to stigmatise mental health conditions.  I am not disregarding alcohol and drug abuse as something that requires help from health professionals or blaming people addicted as "bringing on themselves", but mental health conditions are different in the ways in which they effect families and the sufferers and should not be lumped together in this way.  If anything the children of mental health sufferers should perhaps be seen as young carers, in the way that other children of disabled parents are. As often is the case this report shows that mental health concerns are given less support than physical health concerns.  Families coping with mental health conditions do need more support, but a automatic referral to social services is likely to be counterproductive and in fact deter women from coming forward and seeking help for their conditions. Had I thought I would be referred I would have said nothing of my feelings, my hallucinations and my need for help.  And that would have been a very bad thing.