CAMHS

Dignity and Respect – Being Treated Like a Human Being (World Mental Health Day)

October the 10th was World Mental Health Day and this year’s theme was dignity. I originally thought this didn’t apply to my situation because I am, mostly, dignified whilst being ill and treated with dignity, or so I thought. I started this post by looking up the definition which I found to be as follows:
Dignity – The state or quality of being worthy of honour or respect.
As soon as I read that, I realised that I was wrong – while I may behave in a dignified manner, I’ve certainly not always been treated in a dignified way and have often not felt worthy of honour or respect because of the way I’ve been behaved towards.

Dignity is something that is often overlooked when treating people with mental health problems and we are often not given the respect we deserve. Sadly, this behaviour is often directed towards us by the very people who we have sought help from, who are trained to deal with our conditions and who we are reliant upon to offer or refer us for treatment. Is it any wonder then that it takes most people such a long time to even go to their GP when they suspect they may be mentally ill? Stigma is still rife within our society and while it is improving and openly stigmatic behaviour is starting to reduce, there is still a really long way to go and unfortunately, nowhere is this more necessary than within the medical community.

My experience of seeking treatment has been very varied and it’s often a very lengthy process. Even when I’ve gone to my GP about physical problems, I’m often disbelieved or it’s assumed that my symptoms are psychosomatic or even made up – all because I have a mental illness. I’m regularly talked down to, patronised and treated with condescension and this has very much put me off doctors and seeking help unless I really have to because I simply don’t have the energy to fight for someone, who should be understanding and sympathetic, to even believe me. Couple with this, the responses I’ve had from doctors when attempting to get a diagnosis or treatment for my mental illnesses and we’ve got one hell of a problem.

A month before I turned 16, circumstances in my life led to me feeling incredibly sad and low and unable to cope anymore, pretty much over night. Mental illness was not something that had featured in my life up until that point – none of my relatives or friends were ill to my knowledge and my only experience was that of over-hyped and dramatized portrayals in the media of violent offenders and people muttering to themselves and rocking whilst strapped into straight-jackets in padded cells. So when I started feeling low and it didn’t go away, I didn’t know what to do. I thought people would think I was silly and that I should just be able to cheer myself up because nothing terrible had happened, no one had died, I hadn’t been attacked, things were just going wrong at home. Eventually, after 2 months of never feeling better, I finally plucked up the courage to go to the doctors. I thought I was going to get sectioned or medicated but I didn’t know what else to do and the thoughts I was having were starting to scare me. I explained to my GP what was wrong and that this wasn’t normal for me. After 10 minutes she told me that it was “January Blues” and “every teenager in the country is feeling like this at the moment”. I said to her at the time that there would be a lot of suicides if that were the case but I was sent home and she did nothing. Two months later I went back, I’d started self-harming and was feeling suicidal every day, she took one look at me and referred me to the Child and Adolescent Mental Health Service because I was very ill and needed help. The first doctor I met there was great, he treated me like a person and was very respectful and understanding about how bad I was feeling and that something needed to be done about it. I wasn’t so lucky with any of the other staff I met there. I was allocated a nurse who I saw once a week who spoke to me like a child and contradicted me every time I said I was feeling worse. I was put on medication more than once and never monitored properly and then told off and admonished when I took myself off it because it was making me suicidal and I felt unsafe. I felt like a naughty child, not a 16-year-old who clearly knew their own mind and felt in danger.

Fast forward to 18 months ago and dignity was thrown out the window by my new GP who decided that telling me to “try harder” whilst dealing with crippling side effects from medications that were later described by a psychiatrist as “virtually poisoning you”, was the best way forward. I practically had to beg her to even refer me to a psychiatrist despite having a history of medication-resistant depression because she felt that I didn’t need one and she was doing a “perfectly good job of treating me herself”. Eventually she conceded and I was able to see a psychiatrist. This has been a good and bad experience. I’ve been lied to, fobbed off, ignored, disbelieved and dismissed. At points I’ve been spoken to like the knowledgeable, well-educated adult that I am who is well aware of the limitations of the NHS and who has studied, worked in and experienced as a patient, the mental health services in this country. But that has been rare. Instead of treating me with dignity and respect, most decisions about my treatment are made without me, often without my knowledge and my very character is often questioned when it’s assumed that my conditions simply can’t be as bad as I’m describing. I highly doubt cancer patients are treated like this when vomiting because of chemo or dealing with hair loss – are they told by doctors to just “try harder” or “stop focusing on the negative thoughts”? I think not! So why am I? Why am I dismissed and treated with so little respect?

It’s clear that many doctors have never been mentally ill, and they’re very lucky. But for those of us that are, it’s hard enough trying to deal with the conditions we have and the things that go hand-in-hand with that like low self-esteem and self-worth without having to deal with doctors judging us, accusing us of faking it, exaggerating, or causing it ourselves. It’s so hard to pluck up the courage to even go to the GP and admit that there’s a problem that you can no longer cope with or hide, without fearing how they might react to you. In an ideal world, we would all be treated as human beings, with dignity and respect, regardless of what symptoms or conditions we have. But currently, this isn’t the case. Something has got to change. Medical professionals, especially those that don’t work in frontline mental health services, are vastly ill-equipped and under-trained to deal with mental illness and instead of seeing people like me as people who are ill, they just seem to see us as walking labels. They still seem to have hugely stigmatic beliefs about us being in control of our conditions and able to just “snap out of it” or “pull ourselves together” and we’re treated accordingly, with disdain, coldness and even aggression sometimes.

First and foremost I’m a human being. After that, I’m many many things – I’m Lucy, I’m female, I’m 24 years old, I’m kind and caring, I’m creative, I’m a great friend. I’m also mentally ill but I’m not those conditions. I’m not anxiety, I’m not depression – I have those, but I’m not them. I am a human being and that entitles me to be treated with dignity and respect, regardless of what conditions I might have. The sooner I’m viewed as a person rather than a list of symptoms, the sooner I’ll be viewed as someone who is suffering and should be treated with dignity rather than a problem that needs to fixed or made to “see sense”. I might be mentally ill but I’m not mad, I don’t lie, I don’t make things up, I’m completely rational. If I say I’m ill, if I say I’m suffering then I’m not trying to gain another label or diagnosis for fun – I don’t get points for it, they certainly don’t convert to prizes. The only reason I seek diagnosis is in the vain hope that it might lead to treatment. Being spoken to in such a dismissive way has stopped me seeking help for most of my conditions and has had a major impact on my self-esteem because it makes me feel less of a person to have a doctor questioning me and treating me with so little respect.

Finally, while I’ve focused on the medical profession within this post, they are certainly not the only people that have not treated me with the dignity and respect I deserve. As you’ll have read in previous blog posts, I’ve been treated disrespectfully by a whole host of people throughout my time as an ill person and this has got to change. You can be that change. Next time you’re talking to someone who’s mentally ill, really listen to what they’re saying, don’t try to fix it, dismiss it, or make them see the positive – just listen. Then think about how you would want someone to respond if you’d just said all of that and were feeling that way. Chances are, you’d just want to be acknowledged, to be accepted and to feel heard. Most of all, you’d want to be treated with Dignity and Respect – you’d want to be Treated Like a Human Being. Be that change today!

N.B – A huge thanks goes to Steve “Squidoodle” Turner for his amazing Breast Cancer Awareness Ribbon Colouring Page which I coloured in green for Mental Health Awareness. If you’d like to get a copy to colour yourself, he’s generously offered it as a free download on his Facebook Page which can be found here. Enjoy and help raise awareness!

What Do You Do When The NHS Gives Up On You?

I’ve had ME for 14.5 years, depression for 8 years and an anxiety disorder for nearly 8 months. The NHS are currently in the process of giving up on treating me for the third time. I’d love to say this is a one off. That I’m the only person this has happened to. But, alas, I cannot because that would be a great big fat lie! The more I talk to people with the same or similar conditions to me, the more stories I hear of professionals just giving up on them and no longer offering treatment. Here’s my story of how they’ve given up on me.

The first time I was given up on started when I was 9 when I came down with a terrible cold that was verging on flu in its severity. I never fully recovered from it. I was ill and off school for a couple of months with no energy, headaches, tummy aches and lack of concentration. I went to the doctors but no one knew what was wrong. I had blood tests for coeliac disease and glandular fever, my thyroid was tested, my iron levels were checked, but all of my tests came back clear. I went back to school and functioned normally again and a few months later I was left with no energy, unable to attend school or do much at all. I was a keen ballet dancer but after an hour’s class I was left barely able to move for the next few days and no one had a clue why. I was sent to a paediatrician who sent me for a psychiatric evaluation to see if I was making it up or had a somatic disorder but after an hour of questioning I was deemed to be telling the truth and having physical symptoms that no one could explain. This all went on for a year until I was finally sent to a specialist in London. He diagnosed me with ME/CFS and that was that. We were informed that there was no cure, no reliable treatment, and nothing really that they could advise other than pace myself or I’d continue to relapse and could relapse to the point of being bedridden or even hospitalised. After that I was sent home and told to get in touch with a couple of ME/CFS charities and basically to hope for the best.

Periodically over the years since then I’ve been back to the doctors about various symptoms caused by the ME and every now and again I got sent to a paediatrician or an occupational therapist or a psychologist (to be assessed again because they thought my low attendance at school was because I was school phobic) but I’ve never had any actual treatment and was just told to do my best to manage the condition. The NHS recommends Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET), though these are highly controversial within the ME/CFS community, but I was never offered these and the closest I ever got was my paediatrician spending 10 minutes drawing a diagram of a staircase and explaining that I needed to become completely able to do the set level of exercise on one step before I made a very small increase to the next and so on or I’d relapse. After the age of 13 I was just left to get on with it, I was practically wheelchair-bound for three years but only got seen by doctors when I needed medical letters as evidence for exam arrangements at school, college and uni. They never even attempted to treat me or any of my symptoms after that.

The second time was years later. I got depression two and a half weeks before my 16th birthday. After a battle with my GP I was referred to CAMHS and put straight on antidepressants with no offer of therapy. I spent the next year deteriorating whilst seeing a specialist nurse weekly or fortnightly and told that I was getting better each week despite getting worse. The medication didn’t help so they put me on a new one and just left me on it for 4 weeks with no check-up or warning that it might make me worse or even suicidal. Those 4 weeks were terrible and made me significantly worse and intensely suicidal. I stopped taking the drugs and got in a lot of trouble with family and my nurse and doctor because I hadn’t done as I was told but I honestly don’t know that I’d still be here if I had continued taking them. They completely altered my mind!

As you may have read in my previous blog post “Mental Illness – The Next Generation”, I then got treatment privately both as an inpatient for 9 weeks and then an outpatient for a few months. Funding ran out and I still needed treatment so I went back to the NHS and got sent to the Adult Services as I was now 18. I was assessed and told I could have Group CBT for 6 weeks. I gave that a go but as I was so much younger than all of the other group members it wasn’t suitable and the group leader said that it wouldn’t help me. I went back for assessment and was told I could have 6 sessions of individual CBT. Bearing in mind I’d spent 9 weeks having intensive group CBT 5 days a week for 9 weeks which hadn’t fixed the problem, this didn’t seem like a helpful option. I was then assessed by another psychiatrist for medication and he said that now I’d tried 5 different antidepressants and found none to be helpful and two that made me much worse, there was very little they could do as I had medication-resistant depression. I was then discharged and told to do my best to keep my negative thoughts at bay and eat well and exercise regularly (well-known cures for depression…. Wait, no they’re not!).

So that was the second time the NHS gave up on me which brings us up to now. Seemingly they’ve exhausted all of the options that they’re prepared to try and I’m now pretty much being left to it. I’ve been reliably informed by my psychiatrist that most patients with anxiety disorders “get themselves better eventually” however, I’ve been given no time frame and the only advice he left me with was to keep pushing and challenging myself. I’d like to point out here that I’ve been doing this for the last 7 months with very little effect.

I knew as soon as I started feeling anxious that I needed treatment and quickly. Something felt terribly wrong and I sensed that I wouldn’t be able to pull myself out of it so after having a terrible panic attack before work on Friday 21st March and struggling to function over that weekend I got an appointment with my GP on the Monday knowing full well that I needed medication. I worked as a nursing assistant at a local psychiatric inpatient unit and am also a psychology graduate so I’m well versed in the medications on offer and the treatments that do and don’t have an effect. My GP offered me Citalopram or Sertraline, both are SSRI anti-depressants, both are drugs I’ve been on before, both made me very ill when I was previously prescribed them. Citalopram made me physically unwell and side effects included stomach ache, vomiting and sedation. Sertraline massively increased my suicidal ideation so much so that I was no longer able to guarantee my own safety and I came off it. I stated these facts to my GP and asked to be prescribed a different drug that I’d not been on before given that I’d only been on 5 out of a list of over 60! I was told that those were my only two options because they’re first-line treatments and so I went with Citalopram. 6 weeks down the line and I was pretty much housebound and suffering terrible side effects that weren’t going away so I was switched to another drug which was even worse. I’ll do another blog post in the future that goes more in depth into the world of antidepressant medication.

Anyway, after begging my GP to refer me to a psychiatrist and her almost refusing because she didn’t think I needed one, I was finally sent to see one and I thought that I was going to get better. He was shocked that my GP had kept me on the medication I was on and said that the drug was “basically poisoning” me and started reducing it straight away and then put me on Pregabalin, an anti-anxiety drug. Since then not a lot has changed. I’m less physically unwell but am still having side effects that dramatically affect my daily functioning. I’ve asked and asked for therapy and was told that I’d finally be sent for an assessment but my psychiatrist has informed me that the therapy I need is very rarely offered because of funding issues and that they’ll almost certainly say no. There has been no mention of any change in medication because there’s nothing else they think will help and all I’m being offered is a 6-week course of Group CBT. I have to take diazepam (valium) in order to get to my psychiatry appointments because I’m so terrified of leaving my flat and last time I missed my appointment because I was having such a severe panic attack that I couldn’t walk or move let alone leave the flat. Going out and sitting on my own in a strange room with complete strangers and talking about anxiety is pretty much as anxiety-provoking as it gets for me at the moment and given that CBT hasn’t helped me in the past, it’s really not an appropriate option. I’ve explained this at every appointment and during every phone call with my psychiatrist because he suggests it every time he’s in contact with me and yet that’s the only option they’re giving me. I should be getting an appointment through for next month which I was told was to be assessed for individual therapy but I’ve now found out that the Group Treatment Programme Service are going to be there too so it’ll be their last–ditch attempt to persuade me to do Group CBT. Following this, they’ll almost certainly discharge me because they’ll spin it that I’m refusing treatment rather than the actual reason which is that they’re not offering me any treatment that I’m well enough to attend. I’m not deemed a good bet for giving therapy to because I’ve not been “cured” by it in the past and I was outright told that the allocation process is based on who is most likely to improve the quickest and that’s clearly not going to be me. I’ll keep you all posted on the outcome of the assessment in December that I’m desperately hoping medication will enable me to attend, but it’s not looking hopeful. Given just how many times my psychiatrist reiterated that most patients with anxiety disorders get themselves better, it’s clear that this is what he’s expecting will happen as he doesn’t think I’m going to be offered any further treatment.

All I’m left wondering is What Do You Do When The NHS Gives Up On You?!

Mental Illness – The Next Generation

http://www.bbc.co.uk/news/health-29954970

According to the above article 300,000 children and adolescents in the UK are affected by anxiety disorders. We need to be treating them quickly and more importantly, effectively, so that they don’t become adults with mental illness. It is well documented that the quicker a person receives treatment, the more likely they are to recover. They also recover faster and to a better extent than those receiving the same treatment at a later stage in the condition. This means that time is of the essence and we need to shorten waiting times and increase access to age-appropriate services which are currently severely lacking.

The month before I turned 16 I developed depression. I had a lot going on in my life and I was struggling to keep up with it all but had been managing it until the depression hit. It was like I’d forgotten how to cope overnight and everything felt totally overwhelming. I felt sad all the time and cried a lot and had no idea why. My parents weren’t getting on, my Grandad’s Alzheimer’s was deteriorating and I was in my final GCSE year and it was all too much. After 2 months of feeling like this every day I went to my GP and explained the situation. I’d done lots of research and figured out that I almost certainly had depression which I suggested to her. I was practically laughed out of the room and told I had “January Blues” and that “every other teenager in the country is feeling like you are right now”. I told her that this wasn’t true and that I’d never felt like this before and that I needed some help and she simply said that it would wear off and sent me on my way.

Two months later I went back to the same GP because I was feeling much worse. The suicidal thoughts had started and I had begun to self-harm as a means of coping. The GP was the first person I told about any of it. She became very worried and seemed surprised that I was now so ill. She offered to refer me straight to the Children and Adolescent Mental Health Service (CAMHS) at my local hospital so that I could be assessed, and I agreed. I think I waited about a month for that appointment and within 10 minutes of seeing the doctor there I was diagnosed with depression and had a prescription for Prozac in my hand. And so my journey into the Mental Health Service had begun. A side note here – I have had a lot of negative experiences with GP’s who are simply not trained enough to notice, diagnose or even talk properly to patients with mental health problems. They are the first port of call and it is soul-destroying when they tell you to try harder, don’t believe you, or even turn you away from getting the help you’re desperate for. This has got to change and GP’s really need more training in this area!

CAMHS was not a good experience for me, I’ll go more into it at a later date but I wasn’t treated well and was often not believed and patronised by a nurse who was apparently a specialist. I saw a different doctor every time and there was never any talk of therapy, just medication and writing a diary. I was 16 at the time but I was treated like a child and often talked to as if I was stupid and didn’t know my own mind. After a year of this I went to see another GP who wasn’t in the least surprised that CAMHS had succeeded in nothing other than watching me deteriorate and he informed me that he’d been campaigning longer than I’d been alive for them to improve their service. I was lucky enough that at the time my family had private medical insurance and he recommended a psychiatrist at my local Priory hospital. After 3 months of seeing the psychiatrist I’d become so ill that I needed inpatient treatment and in May 2008 I was admitted voluntarily for 9 weeks. Whilst there I was by far the youngest patient at only 17 and everyone else was nearly 10 years older than me and more. Most were the same age as my parents. Being treated like an adult was so much better than being treated like a child, however it was a challenge in the intensive CBT sessions we had because my problems were very different from everyone else’s due to my age.  All credit to the staff there though, they were brilliant at adapting the sessions to me and the patients became like a family (more on this also at a later date).

Circumstances led to my treatment being placed back with the NHS the following year and I was offered group CBT for stress management. Again, I was by far the youngest at 18 years old with the next youngest being in their late 30’s. This caused a huge amount of problems in the session because it wasn’t applicable to my life at all. When we had to come up with a list of stressors I was saying things like college and they were all saying about work. One woman looked directly at me and then offered “children” as a stressor so I looked straight back and said “parents”!  The group wasn’t suitable for me at all and after speaking to the therapist at the end we both agreed that I wouldn’t really get anything out of it and so I left. After that my psychiatrist at the time said that there was very little they could offer me that I hadn’t already tried because I don’t respond to medication and they couldn’t offer appropriate therapy for my age. This, as shown in the article above, is a very common problem. Children aged 8 have very different problems from teenagers, who in turn, have very different problems from working-age adults. We already separate mental healthcare into working-age adults and older adults and I think that there is desperate need to have dedicated adolescent/teenage services. Those who are aged 14-19 should have their own dedicated treatment services because their issues are so different from other age groups in terms of their development and life circumstances. There are so many transitions to go through at this age and older adults who have their own children will simply not have the same problems and therefore there is little to be gained by lumping everyone into one big group session where ultimately everyone feels alienated by a lack of common experience. Group therapy can be great if you get the group dynamic right but placing an 18 year old in with someone in their 50’s just isn’t helpful.

We need to be intervening early with children and adolescents who are showing signs of mental illness so that they can get treatment quickly but it’s essential that they are then given age-appropriate treatment by people who are trained in working with patients of that age group. Without this we’re simply leading the next generation of mentally ill people towards a long journey of poor or even no treatment and increasing the likelihood that they’ll be ill for life.  You may or may not believe that children (and adolescents) are our future but they certainly deserve their own future to be free from mental illness and the first step towards this is creating age-appropriate services dedicated to this!