As if it’s October already! For a lot of people, October means Halloween, but for those of us in the mental health industry – particularly mental health Bloggers, October means; World Mental Health Day (WMHD) – probably one of the most important dates in the calendar for me.
This year, the World Federation for Mental Health has announced the theme to be ‘Mental Health for All.’ Inevitably and understandably, a huge inspiration for the theme has been the Coronavirus and subsequent ‘lockdowns.’ I think that one aspect of the inspiration comes from the fact that there’s been an increase in the prescription of anti-depressant medication during this difficult time. That, and the increase on referrals to mental health crisis services, really pressure the already underfunded area.
It took me quite a while (so long that I desperately asked Martin from www.gumonmyshoe.com for his ideas!) to think of what I wanted to say today on this theme around improving access to mental health services for everyone. In the end, I realised that I have a lot of thoughts around various aspects of the theme and that maybe I can’t give them one set category… So, here’s some thoughts that’ve been inspired by the Federation’s theme:
1. Two people can have the same diagnosis and still present completely differently
I feel like I’ve got a lot of experience with this thought, and it’s mainly because of my diagnosis of Borderline Personality Disorder (BPD). When I was diagnosed in 2009, the diagnostic criteria were that you have at least five of nine possible symptoms. So, when I went into the psychiatric hospital that specialised in Personality Disorders, I thought maybe I was fortunate because all the other inpatients had a mixture of five symptoms, and with me having all nine; I thought that might mean I could better relate to everyone. But I soon found out that even though some had the ‘same’ symptom, we mostly all presented and experienced that symptom in different ways.
One symptom of BPD that I massively struggled with was ‘feelings of dissociation’ (I actually ended up being diagnosed with Transient Psychosis because this ‘symptom’ was so strong) and I experienced it in the form of hallucinations. I think there was maybe one other inpatient who had auditory hallucinations but there was absolutely no one who had visual hallucinations like I did. And it meant that even though I was surrounded by people with the same diagnosis as me, I still felt so alone and different.
I think that the fact even I had been mistaken on this one, really helps me to appreciate others who also might not realise this. And whilst my experience of this is around BPD, I can’t imagine that there’s no other mental illnesses where this is the case. Even with my secondary diagnosis of Transient Psychosis, of course it means that most people with the diagnosis hallucinate, but they might hallucinate different things or feel a different way about their hallucination. Some people are scared of them; some people are actually quite comforted by auditory hallucinations – which is definitely not the case for me!
I think it’s important, though, that we recognize everyone with a mental illness as still being individuals and equal.
2. Mental illness doesn’t discriminate
You know the whole thing about how one in four people have experience of mental illness? I think it’s a great illustration of the point that all the people it impacts don’t have absolutely everything in common. They aren’t all the same colour. They don’t have the same job. They haven’t all experienced trauma. They aren’t the same age. They aren’t the same body type. They don’t all like the same foods!
And this is because mental illness doesn’t discriminate; of course, these aspects of a person can all impact their mental health, it’s just that not everyone with something like the colour of their skin in common, is also mentally ill.
A few weeks ago I bumped into a neighbour on the way to get some stitches removed from a self-harm wound and since my neighbours have my blog link and we’re all friends on Facebook, I told him where I was going when he asked. He then said ‘what do you do that for? You’ve got a lovely home, and your pets, you’re a beautiful young girl…’ And I told him ‘you don’t know what’s going on in someone’s head or what happens behind closed doors’ and he apologised. And I didn’t just say what I did for the way he treat me; it was also about ensuring he didn’t say something like that to someone else.
He hasn’t been the only one to say I’m pretty and so why am I self-harming or why am I suicidal. As though your appearance is a protective factor so that a trauma doesn’t impact you?! Or the fact you have nice hair means that you’ll never have a chemical imbalance in your brain?! It’s so important that people realise this because I think it’ll lessen the stigma and discrimination if someone realises that it could be them. They could be the one sitting in A&E. They could be the one being restrained to stop them from hurting their self. It could be them on life support after a suicide attempt. Or it could be a family member! A friend! A loved one! And I honestly feel like this understanding and gratitude is there for medical illnesses that don’t discriminate like Cancer, so why not mental illness?
3. Medication isn’t always the answer
A very popular response when a person struggling with their mental health attends a GP appointment, is to prescribe medication and offer them a review in a few weeks’ time because ‘the meds should have kicked in by then!’ It’s very rare that when you first present to a professional, you’re offered counselling or therapy. I guess maybe some of the thinking behind this is ‘why throw all the services at them when a tablet will make a difference?’ And I get it; I mean, mental health services are massively underfunded and yet they are really essential to the lives of a lot of people! So, I feel that because of this, medication has become the first port of call in a lot of instances.
It actually wasn’t the case for me though. I remember it wasn’t until after my second suicide attempt that medication came into the picture. The Crisis Team gathered all of the necessary professionals into my Mum’s house (where I was living at the time) to section me under the 1983 Mental Health Act. And one Psychiatrist whose care I’d been under on my first hospitalisation came into my bedroom and he said, ‘I think it’s time we try some medication for these voices.’ I remember feeling so relieved and grateful because I honestly thought – and definitely hoped – that medication would get rid of the auditory hallucinations I had been experiencing for a few months.
I think at the beginning of my mental health deteriorating, the regular changes in my meds was largely down to the uncertainty surrounding my diagnosis. At one point I was told (by an NHS Community Psychiatric Nurse!) that the reluctance to diagnose me with BPD stemmed from the belief that it was a ‘death sentence’ because no one ever recovered from it, and that ‘services don’t like to help people with it.’ And obviously there’s different recommended treatment for each illness so a medication that might help one Disorder, might not make a difference if you have a different diagnosis.
When I was finally given the BPD diagnosis, there was one Psychiatrist in particular who regularly reminded me of the fact that medication isn’t recommended or seen to be helpful for people with BPD. Yet, when I was in the Personality Disorder specialist hospital, every single inpatient was on some kind of psychiatric medication! But no, the Psychiatrist had to stop all of my meds to see what I was like without them all! And I’ve probably never felt so unsafe as when that happened. And I remember having an appointment with her a few weeks after my meds had stopped and she said ‘I guess they do help you.’ I felt like screaming at her that if she’d listened to me and realised that I had the best insight into what helped me, then I wouldn’t have to go through everything I’d done to myself when I was unmedicated.
And yes, some people hold a lot of shame and embarrassment around telling others that they’re on such medication, but fortunately; I don’t. I actually feel very lucky that psychiatric meds help my mental health so much (my anti-psychotic completely gets rid of the hallucinations!).
4. I think it’s mostly true that you have to self-harm or attempt suicide to be hospitalised
So, one of my neighbour’s granddaughter started being bullied and she began saying that she wanted to hurt herself. When her parents went to the School staff they turned around and said they couldn’t do anything until she actually self-harmed. And now she has, they’ve been completely inadequate in supporting and helping her!
I wonder if this fact around hospitalization and the instance with the granddaughter are similar to the thought process behind medication; that the underfunded services are so stretched they’re trying to limit how many service users – or inpatients – they have. But I think that way of thinking is completely backwards! I mean, shouldn’t services be helping people at the earliest opportunity so as to avoid everything escalating and the person needed long-term help?
Another reason behind the reluctance to hospitalise someone, is usually the consideration as to whether it might do more harm to take that person’s freedom, control, and responsibility. The weighing up of whether admitting someone to hospital will exacerbate the deterioration of their mental health or will ensure their safety whilst arranging/organizing a longer-term care plan.
This point also reminds me of when I was in the specialist hospital in 2014 and one of the other inpatients asked what my turning point had been – what had motivated me to co-operate with staff, and put more effort and commitment into recovery. I told her that it had been my suicide attempt in October 2013. I had been prescribed paracetamol by a Doctor on the ward, and began pretending I had taken them until I had saved up enough that the hallucinations were happy with and agreed I should take them all. A while after taking the tablets, I thought that the staff wouldn’t be able to do anything about it and told my Key Nurse. She promptly sent me to A&E with some staff from the ward. In the medical hospital, I refused the antidote to the overdose and after giving me a small sedation of ketamine, I managed to use one foot to take the antidote drip out of a vein in the other foot, and was sedated to be put on life support and taken to the Intensive Care Unit. Apparently the first thing I said when I woke up was ‘I’ll never forgive you for saving my life’ and the psychiatric staff made the decision that now I was medically fit, I would be transferred to the Psychiatric Intensive Care Unit (PICU). I was on observation levels known as ‘eyesight’ which basically meant you had to be within eyesight of the staff at all times and I remember being so desperate to have a shower that I didn’t even care a complete stranger was looking at me naked. I spent the following few days sleeping and vomiting until I was finally allowed back to the ward I was usually on.
And I told the other inpatient this story and explained that it had felt like such a low point in my life – the thought that I’d been so suicidal I’d used my feet to stop the lifesaving treatment, really hit home. And I remember thinking on the PICU ‘things can never get worse’ and in that moment, I realised that I never wanted that to happen again. So, I began doing everything the staff believed would help me. Within an hour after me telling the inpatient this, she had tried to hang herself in her bedroom, had stopped breathing, and when she was revived apparently the first thing she said was ‘can I go to the PICU now?’
When I was told, I obviously instantly felt terrible and completely to blame, even when the other inpatients and the staff reassured me that what she’d done wasn’t my responsibility. And looking back, I do wonder if maybe it meant that hospital wasn’t the best place for her… another sign of this was that when she was first admitted to hospital she didn’t have a single scar or wound on her arm, but by the time I was discharged, she needed plastic surgery for the damage she’d done through self-harming. And it wasn’t just a change in her mental state – a number of inpatients used to encourage one another to self-harm – to the point where they once passed a blade amongst one another knowing full well what the next person was going to do with it!
Another aspect of being an inpatient which encourages mental health professionals not to admit someone, is related to the above story and it’s about the fact that as an inpatient, you can see some pretty horrific things from others. You almost inevitably build relationships with your peers and with it being a psychiatric hospital, it’s also almost inevitable that those peers will go on to self-harm or attempt suicide. I became really close to one girl in particular in the specialist hospital and it was heart-wrenching to see her cry and hear she’d hurt herself…
5. The adequacy of a service can be a postcode lottery
Kind of a basic thought… In 2011, my Mum and I had a huge argument and I ended up moving to Dorset to live with my Dad. His wife (my Step-Mum) wasn’t too happy to have me live there though and my Dad asked me to leave. For the previous two years, I’d coped with everything negative and upsetting by self-harming or attempting suicide and this instance was no different. I was sectioned and admitted to a psychiatric hospital down there and then apparently, one of their staff spoke to my Mum and he mentioned Dialectical Behaviour Therapy (DBT). He was surprised that my Mum and I hadn’t heard of what the recommended treatment for someone with my diagnosis of Borderline Personality Disorder (BPD) was.
I came home to my Mum and learnt there were still no services specialising in my diagnosis in my locality. So, on one psychiatric admission in a local hospital, the Psychiatrist recommended I be assessed for an ‘out-of-area placement’ – a fancy way of saying that I needed to be in a psychiatric hospital miles away! He explained that his motivation for this was that after three years of self-harm, suicide attempts, and hospitalisations, it was now blatantly obvious that even the very best services my locality had to offer weren’t adequate in improving my mental health. He went on to predict that I wouldn’t make it to my next Birthday; and with that, my Community Mental Health Team began searching for relevant hospital options…
I live in Northumberland in the North East; and at that time the nearest, most appropriate hospital, was in York! Unfortunately, though, when they assessed me, they concluded that they weren’t an adequate hospital to cope with my ‘flight risk’ and determined that I needed to be admitted to a more secure hospital.
The other ‘option’ for a long-term, specialist hospital was over 100 miles away from home in Bradford but it was much more secure (the doors were so locked that I actually broke my foot when I tried to kick them open!). But when I had my assessment with their staff and learnt more about what being an inpatient entailed – the early mornings, structured days of therapeutic groups, the DBT sessions (both group and individual), medication, and general loss of freedom and control – I refused to go.
Unfortunately, after a suicide attempt landed me on life support in the Intensive Care Unit, it was no longer my ‘decision’ to make. I was transferred to the hospital with the very strict timetables and sectioned under the 1983 Mental Health Act. It took me a while to stabilize enough to begin DBT, and then it took over a year of the sessions to actually learn the coping skills it teaches. And we used to do these diary sheets where we’d document what had happened during each day and list which skills, we’d used to help us to stay safe until the point when they were coming naturally.
The postcode lottery thing came from this one comment a member of the hospital’s staff made to me when I told them that my records showed I’d been hospitalised over 60 times in the previous three years. She said, ‘if you’d lived nearer to this hospital, you’d have been admitted after your first suicide attempt.’ This – although it obviously wasn’t intended this way – completely infuriated me! I mean, what if one of my suicide attempts had ‘worked’ and I didn’t live long enough for that one Psychiatrist back home to suggest a specialist hospital?! And why did my postcode mean that I’d had to come so close to dying that I was on life support, to get the help and support this hospital offered? I shouldn’t have never had to move so far away from my loved ones.
The one thing that placates my furiousness has been that going to that hospital saved my life.