change – Our Happy Notes

Mad Liberation: The Missing Piece of The Puzzle

Posted on May 19, 2023 by Millie :)

There are a lot of social movements now that are gaining awareness and support in new ways thanks to the global communication the internet has made possible. For example, feminism, Black Lives Matter, climate activism etc. And it’s very encouraging to see that more people are becoming aware of how these all link together too. There’s still a very very long way to go, that’s for sure, and in some ways the enormity can seem overwhelming. But there’s certainly movement happening in these movements, and a lot of passion. But what about mental health?

When we think of the mental health movement we think of mental health awareness. And for the vast majority of people what they come in contact with under ‘mental health awareness’ is hotline numbers, slogans telling people to reach out, self care tips, and really very repetitive, surface level approaches. The general public does not seem to be aware of the deep issues and abuses in psychiatry, how we view mental health, and how it really impacts all of our lives. In all the fighting for a better future, mad liberation is overlooked, underestimated, misunderstood, or ignored. And that’s damaging for all of us. We cannot be fighting for racial justice, trans rights, and human rights without mad liberation. And yet so few people seem to be aware of it – in fact many people seem scared to approach the topic, which just shows how deeply the stigma and ignorance runs. Maybe, just maybe, mad liberation is the missing piece in the social justice fight.

Take for example the language we use to describe other social movements – you are a climate activist, a civil rights activist, a human rights activist, but you are a mental health advocate. That’s not to say advocate is a bad word, it is absolutely not, and it’s a badge I’m proud to wear. But to call myself a mental health ‘activist’ sounds wrong. Why? Is it because advocacy feels more acceptable? Perhaps it connotes simply raising awareness within the status quo, continuing to adhere to systems already in place rather than radically opposing them and fighting for change. Maybe not, but I certainly think there’s something in the language.

Furthermore, why is it always mental health advocate, and rarely mental illness advocate, or madness advocate? For me that sums up the major narrative surrounding the mental health movement, because it focuses on the palatable part that challenges less assumptions and less people, that appeals to everyone. Everyone has mental health, so everyone should care about mental health! Yeah – that’s not wrong. But a lot of people are deemed mentally ill. A lot of people deal with the consequences of madness in this society their entire lives. And the narrative focusing on the easily digestible, easily implemented parts of mental health awareness leaves them behind yet again. It silences and harms them.

Psychiatry uses mental illness to uphold societal values. Always has. That’s why drapetomania was a proposed mental illness to explain why slaves wanted to escape slavery. That’s why being gay was classified as a mental illness until 1990, and being trans was classified a mental illness until 2019. And that is why one of the major diagnostic criteria for mental illness nowadays is disruption to a person’s ability to work – productivity and fitting into expectations of normality are societal values.

But people are very rarely encouraged to consider this. They are encouraged to be aware of the signs of common mental illness in the context of deriving from the expectations placed upon us, and recovery in the context of making people be productive citizens again. The common mental health awareness narrative traps us. It does not allow us to redefine healing, to discover the socioeconomic factors in wellbeing, to find community, or to change the pace at which we live. It does not allow us to think about the deeper questions of why, and how can this really be better.

But what would happen if we questioned? We would hear the voices of psychiatric survivors shouting about the abuse they have endured in the mental health system. We would discover how mental illness and criminalisation are deeply intertwined, and perhaps discover how to create true justice by supporting and liberating people in new ways. We would start to ask, what would happen if we didn’t sedate people into the same reality, but rather found ways to help people incorporate their own reality into their world? We would find new ways of sharing resources, kindness, connection, and changing the pace at which we live. We would find new language to define our human experience. We would free all of us to actually consider what happiness entails. Finally, we would find the link to all the other socioeconomic problems we are facing today, and in doing so find new solutions and progress towards all of them.

We need to be kind and we need to be supportive, but we don’t need to be afraid to really ask questions about mental health, its presentation, and the treatment of madness as it is. Mental health activism is needed. Mad liberation is needed. But a deep held belief that mad people need protecting – or being protected from – has too often tried to stifle the missing piece in social justice movements. Mad people deserve to be heard, believed, and treated with respect and dignity in social action spaces just like anyone else.

So I ask the question – is mad liberation the missing piece?

Maybe. I don’t know for sure. But I think it might be. I certainly think solidarity between oppressed, hurting, and caring people is necessary for progress. We won’t fix everything; we will get things wrong. But as long as we keep questioning, and keep learning, we can make a difference. It’s worth a try at the very least.

Advocacy, autism, Mental Health, neurodiversity, Personal Growth, sobriety, therapy

Hurt by Psychiatry

Posted on March 31, 2023March 31, 2023 by Millie :)

Content warning: ED, psychiatric abuse, suicidal ideation, any mental health topic really

I want to write a really strong and defiant letter. I want to write some crazy, proud, creative theatre piece. I want to write something truly hopeful. And while I do have hope, and I do have gratitude – because it is essential to my survival – I also have a lot of pain. And anger. I can talk openly about so many traumas and just general shitty things that have happened in my life. But the one I’ve never been able to write about, never even been able to get through a conversation about without screaming and crying, is the pain endured under the psychiatric complex. Because they were meant to help me. Time and time and time again I have gone looking for help and time and time and time again I have been turned away with only more hurt. I know help is a brave word. I’m not afraid to say it. But I am afraid that when I say it no one will listen. This is my story of a journey through the mental health system.

Just a disclaimer, because as a writer on mental health I feel it is my responsibility – if you are in a bad place and looking for professional help, please do not use this as your excuse not to. I do know some people have been greatly helped by the mental health system, and you could be too. This is not intended to invalidate anyone’s good experiences, but rather to say that all of us deserve to have those good experiences. This is simply my story as someone who feels they have slipped through the cracks. If you feel this may affect you negatively I implore you to take the decision not to read any further.

I first asked for help from the mental health system when I was 12 years old. I was experiencing mood swings and distress that were really bothering me – maybe just normal teenage things, maybe not, but the point is it doesn’t matter. They were bothering me. Anyone who wants help, even just to navigate daily life, should be given it. I was assigned a counsellor from the early intervention team. I didn’t like them, so I asked to change. I was discharged from the service – I took that as a message that if I had an opinion on my care, my care would be withdrawn from me.

My first contact with CAHMS (child and adolescent mental health services) was due to an eating disorder at 14. My life was being ruled by it – I had complete meltdowns when I couldn’t exercise, was hyper fixated on food all the time, was weak and angry and alone; I was really hurting. They weighed me. They told me I wasn’t a low enough weight. I took that to mean I wasn’t sick enough. Without any regard for how I felt, or how food was ruling my life; without anyone trying to find out anything about my experience they denied me the help I so desperately needed. Suggested possibly a meal plan – with no support to implement it or formulate it. If a teacher hadn’t sat with me at lunch every single day for a year and coached me through it because she’d been there too, I don’t know how I would’ve gotten through it.

I severely relapsed with my eating behaviours twice more, and I still struggle with some thought patterns and triggers to this day (though I am in a much better place, largely due to recovery in other areas giving me the tools to transfer). But I never felt like I really recovered from it, or had the support I needed. Even 9 months ago that teacher would still notice when my old behaviours around food crept in – even before I did – and help me to recognise and head them off. I am immensely grateful for that… but it wasn’t her job. It was never her job to be the main guidance and support in eating disorder recovery.

CAHMS did offer me six sessions of group therapy. This was to deal with my overwhelming anxiety – much of it around socialising – and deep depression. They didn’t see it as deep depression. It was. It was really, really dark. I stopped going to any lessons and lost all sense of self and hope. But yeah, six sessions would be enough apparently (obviously not). I freaked out at the thought of group therapy, it was entirely unsuitable for me. Once again I received the message in response that if I had an opinion on my care, I wouldn’t get any care. They wanted to discharge me right then, but my wonderful mum stuck up for me so they offered me three – I repeat THREE – CBT sessions. They were not useful. I was put on a years long waiting list for an autism assessment. I was offered no more support. I continued to struggle.

My mum’s determination to get me the help I deserved was incredible, and probably the only reason I got any support at all. (My mum is probably reading this, so thanks mum). She found a charity that was amazing in supporting us through my teen years, and funded me to see a private psychiatrist – this would not have been possible without them. However I wouldn’t say that was particularly helpful either. That psychiatrist did diagnose me with autism (side note – the assessment for autism really needs to be changed), anxiety and depression. I am eternally grateful for my autism diagnosis – it truly did change my life knowing I was autistic. But it changed my life because I went away and learnt about it, as did my family. The psychiatrist did not formulate a treatment plan for any of this, or provide any further support. Some medication that didn’t work was all she offered.

In this time I also saw a few therapists – I didn’t like them, one of them didn’t like me and kinda dumped me. All of them were privately paid for. The subpar care I received was paid for privately – can you imagine how much worse it would have been if we hadn’t been able to afford it?

I know this is all a lot of information, but stick with me here. This journey is important to understand because it is something so so many people face. I slipped through the cracks of this system – even with the privilege of being a white, cisgendered woman. I had it reasonably easy.

In February 2020 I had what I now recognise to be my first (and most intense) mixed episode. I cannot even put this experience into words but essentially it was all the darkness of depression with all the heightened energy and irritability of mania at the same time. I felt reality slipping away from me and I have never been in such intense distress. Two teachers stayed with me at school hours after school ended to try and keep me safe. They eventually helped me calm down, but I later found out they were so concerned they were about to call an ambulance or the police, as the crisis line wasn’t helping. I went to the GP during this episode begging for help. She prescribed me valium to calm me down, but when I begged her for more support I remember her chastising me for being so emotional because she had other patients waiting. I took that as a message that I still wasn’t sick enough; still wasn’t important enough.

In March 2020 the private psychiatrist diagnosed me with cyclothymia. We had to pay extra for an emergency appointment. She decided I was now too complicated to be under her care and needed more support so referred me back into the NHS. They did not follow up on her recommendation for more support. By the time they saw me I was a bit calmer so apparently that meant I didn’t need help. In her eyes I was too bad, in their eyes I wasn’t bad enough. So I was left with nothing. This was the trend that would continue for the next three years.

In September 2020 I wound up in A&E. I was broken and desperate. When the CAHMS crisis person finally arrived she acted annoyed about me being there, annoyed she had to be there, uncaring. She essentially asked ‘if things are so bad then why haven’t you killed yourself yet?’ and sent me home with no support. They didn’t follow up on any support because I calmed down a bit after, so I was no longer considered in crisis when they finally did get in contact (even though they hadn’t helped me when I was in crisis) and because I was drinking at the time. Just so we are all clear – if a young person is drinking as heavily as I was, that is exactly the time they need support. I went to my first AA meeting after I left the hospital that day. And excuse my french but thank fuck I did. I have no idea if I would still be alive otherwise. And having connected with others who have been subjected to inpatient treatment, I am incredibly grateful I did not have to bear that extra trauma. This is how bad the surface level service is – it’s even worse inside.

After I got sober in July 2021 I was still struggling. I finally got to see a psychiatrist on the NHS in October 2021 because of my mum’s insistent fighting for me. When he asked me what I wanted from the meeting, he chastised my response. He was unclear. He shouted at me, and revoked what I thought I had been diagnosed with in a letter. I was meant to see him again in 10 weeks and he cancelled. I got discharged from CAHMS without them ever asking to talk with me about how I was doing.

The one professional who has been a saving grace is my therapist. She is autistic herself and very flexible. But again – if I wasn’t able to fund that privately I don’t know where I would be. After my charity funding stopped when I turned 18 I had to take the sessions down to every 2 weeks, even with her sliding scale, which is significantly less helpful. Luckily I’ve also found amazing peer support, especially through AA, and spent a lot of time reflecting and doing my own work, so I’ve managed to build myself a much brighter life. But it’s been hard. And sometimes I really do need some more help – no one should have to do this alone.

I Went back to the NHS this October and had my first ever good meeting with anyone, just someone in my GP clinic. Why? He was honest. He genuinely seemed to care, but there was nothing they could offer me. He explained that as far as the system saw it, I had already been helped.

In late 2022 my mental health really started to decline again. I went back to the NHS this October and had my first ever good meeting with anyone, just someone in my GP clinic. Why? He was honest. He genuinely seemed to care, but there was nothing they could offer me. He explained that as far as the system saw it, I had already been helped. So from October I was searching for a psychiatrist who would see me.

I was turned down by over 10 private psychiatrists for being too complex, having comorbidities, or my favourite way of putting it: ‘them not being able to offer the support I need at that time’. So I was again too bad for private and not bad enough for the NHS. One of the only people who would see me charged just under £1000 a session. Others said they would consider seeing me, but were booked up until 2024.

Finally in March 2023 – 5 months later – I got to meet with a private psychiatrist. And wow, he was amazing. We had three meetings so we could cover everything. He was kind, listened to me – really listened – and didn’t patronise. He treated me like an adult, and made it clear I would have a say in my care plan and the final report that would be sent to my doctor. I would have a say? I almost thought that wasn’t allowed. I’m still sceptical, it still doesn’t feel real.

He diagnosed me with Bipolar type 1. Just think about that for a minute – an 18 year old has been dealing with undiagnosed bipolar 1, unsupported, emerging from 12 years old. I have no idea where I would be without the angels placed in my life along the way; without the undying support of my family and friends; without the flexibility of my school. I knew something more was going on, I knew how much pain I was in, and no one in the mental health industry was listening. I was screaming into a void and not even hearing the echoes of my own screams. (A separate issue is that we shouldn’t need labels to validate that level of human distress, which is what it is at its core, but diagnosis can be so validating. Read more about that here).

I am not in any way saying this one experience erases all the rest. It does not. It absolutely does not. And it doesn’t not mean that psychiatry isn’t built on an oppressive, harmful foundation whose history has been hidden. It is. But it was a little hope given back to me. A relief at the very least. Before I went into that meeting I said ‘I’ll take them just not being actively mean to me’. How sad is that? What a desperately low bar.

I’m still scared. He has instructed my GP to refer me back to secondary care teams in the NHS, which I still – like always – hope might offer some help. But the main thing offered seems to be medication, which I have some serious and valid concerns about. But I am terrified of raising these concerns or asking about alternatives for fear that a) I will be labelled as disordered and my new diagnosis weaponised against me or b) I will be labelled as non-compliant/ not wanting help enough, and sent away again. I wish I didn’t want help from them, and maybe one day I’ll be able to find a path that avoids dealing with the mental health system altogether. But I’m not there yet. Nor should I have to avoid it. It should be an inclusive, varied, accessible service. It should have community and individualised care. It should have alternative treatments and input from patients. It should see the human condition as a spectrum. But it doesn’t. And being mentally ill makes me scared that if I voice any of this, I will not be taken seriously. How can anyone ever prove that they are sane?

I deserve better. Everyone deserves better; we deserve to know that no matter what we’re going through there will be appropriate support for us. But it’s not there. And this broken system is quite literally killing people. We can’t just say fund the system either, the system needs to change. I need it to change, we all need it to change.

I think I’m sharing this because the younger version of me wanted desperately to read it from someone else. So the core message is that you are not alone. You are not alone in the hurt psychiatry has caused you. You are allowed to be angry about it, and distrusting of it. You are allowed to choose your own care and your own path – even if others don’t understand it! (And that applies to all paths – mental illness should not be policed). Your pain is valid, completely valid, and I see you. I see you.

Sending love and support to you all today xx

Advocacy, Mental Health

Letters to my MP

Posted on December 19, 2020 by Millie :)

This is the first of five letters to my MP regarding the mental health system, sent originally in May – it is not even worth me posting the others because they are all very repetitive following evasive responses. However I thought I would post this one as it gives a comprehensive overview of how I regard the mental health system in the U.K. and I’d like to say is a reasonably interesting read. If you’d like to read any of the others or responses please do get in touch.

Dear Mr ****,

My name is Millicent ****, I am 15 years old, and I am a resident of the **** district. I am writing to you today concerning the topic of the mental health system in the UK, particularly regarding young people. This is of great personal and nationwide importance since the mental health of citizens is an intersectional issue impacted by and impacting most aspects of society. You may be aware of many of my concerns already, however there is so much still to be done and these issues need highlighting, especially in the light of the Coronavirus pandemic which will no doubt influence the mental wellbeing of the population. I firmly believe that investment into the improvement of support in the UK will aid the return to life following this pandemic. I will also send a copy of this to you handwritten. It is my hope that you will take the time to read this email in full, as it is a comprehensive display of the complex problems within the system, and that it may open a discourse with you about what can be done to improve the system, and therefore society. Essentially – how will you, as an MP, push for change?

In this email I will cover:

– Personal experience

– Statistics and widespread perceptions of the system

– The intersectionality of mental health

– Issues with the diagnostic process

– My questions about the system, what can be done, and ideas for what could be improved

– Summary for your convenience

In the last three years I have been diagnosed with high functioning autism, anxiety disorder, cyclothymia (a subtype of bipolar disorder) and disordered eating. To say I have struggled would be an understatement, and in terms of intervention from mental health services I have struggled alone. I only received these diagnoses after reaching breaking point, and through the private system funded by charity money after being consistently failed by CAHMS. Even then I faced long waiting lists and inadequate support. I will raise my concerns within the context of my own experience.

When I was first referred to CAHMS I saw a counselor who I did not connect with; when I asked for a change of treatment, I was denied such. A year later – after a sharp downward turn in my mental health which meant I could no longer partake in a full school timetable – I was referred to the service once again. I had an initial assessment which left me confused, and they brushed aside my difficulties with my moods. I was offered group therapy, which intimidated me, and a check in with the eating disorders unit. I was not consulted about my treatment. After a panic attack in the office and a month of complaints I was offered CBT – but only 3 sessions; this is completely inadequate by any standards, including the NHS NICE guidelines, to make any change. When I raised concerns unrelated to my anxiety in these sessions, they were brushed aside as unimportant or not relevant to their unit. I was told by the eating disorder unit that I was ‘not light enough’ to qualify for in depth treatment – despite having lost a stone in the space of three weeks and being unable to eat more than five-hundred calories a day at the time. At the end of my CBT I was let go of by the service as they felt they had nothing more to offer me. I was told an ASD assessment would take eighteen months. Four months later I was struggling with suicidal tendencies, self harm, bulimia, and other issues. The overarching theme here is that I was continually told I was not ‘bad enough’ and by the time I was ‘bad enough’ I had no support systems in place.

So my first questions are these: how can we change the system so that the needs of individuals are taken into consideration? How can we improve communication across units within the system so that the individual’s struggles are dealt with at all levels? How can we ensure that all the patient’s concerns are being taken into account, without ridicule? How can we create better measures to support people at all levels of the system, so that they always feel valid and the preventable outcomes do not occur, which often leaves people alone or the system overwhelmed? A simple answer would be funding – the system needs better funding to be able to cope with the influx of patients coming through, and approach each one with compassion. However this is not the singular solution, which I will come to later, and would require a shift in the focus of government by essentially making clear that it puts the wellbeing of its citizens first, and is not afraid to invest in long term solutions and improvements.

I am not alone in my experience – a quick survey on my Instagram provided me with several answers, all of which backed up my perceptions of the system; I have heard conversations about the same problems repeated over and over again. Here are just a handful of responses from my Instagram:

‘I’m sure mental health problems could be caught and helped earlier with better funding’

‘Mental health services for young people are woefully underfunded’

‘I’d say more funding for counselor programmes as there are massive waiting lists for them’

‘Private services are so dear, and many slip through the net because they can’t access help in time’

‘Not enough work is done to prevent mental health problems and when there is a crisis, the systems are not properly equipped to deal with them’

In terms of statistics, the Community Mental Health survey 2019 by the Quality Care Commission reports ‘many of those areas identified as in need of improvement in 2018 have declined further, continuing the negative trend of results consistently declining over the 2014 – 2019 period’. This follows the publication of the government’s ambitions in the Next Steps on the Five Year Forward View (2017) and the NHS Long Term Plan (2019). As reported by the charity Mind, this weekend also marked 18 months since the Mental Health Act review – and we are still waiting for the government to make vital changes. Some key statistics from the survey are:

– 31% of all respondents said they did not know who to contact out of office hours within the NHS if they had a crisis

– One in five respondents that did know who to contact, and had done so in the last twelve months, reported they did not receive the help they needed during a crisis

– Less than half (42%) of respondents said they had ‘definitely’ seen NHS mental health services enough for their needs. This is five percentage points lower than 2014

– Almost a quarter of people (23%) were not involved in agreeing their care with NHS mental health services.

– Only 52%, of those who agreed their care, felt they were involved as much as they wanted to be in that process

– 29% of people had not had a formal meeting with anyone from the NHS mental health services to discuss how their care is working in the last year

This barely scratches the surface of the 92 page report, which shows quality of care throughout to be below expectations and satisfaction, and many of these issues may also be exaggerated further within CAHMS which presents the challenge of dealing with those under 18. I think you can agree this is simply not good enough.

While I am on statistics, here is an introduction to why the mental health of the country is important:

– Approximately one in four people in the UK will experience a mental health problem each year (Mental Health Network, NHS confederation, 2016)

– In the UK and the Republic of Ireland there were 6895 suicides in 2018, a 10.9% increase (Samaritans). That is 6895 lives lost, futures lost, family and friends in mourning

– The rate of suicide among under 25s increased by 23.7% in 2018 (Samaritans)

– The rate of suicide in the last quarter of 2019 hit a 19-year high, at 11.4 deaths per 100,000 people (ONS)

– Mental ill health is responsible for 72 million working days lost each year and costs £34.9 billion each year (Thriving at work: The independent review of Mental Health and Employers, 2017, Stephen D, Farmerson P), although some other reputable studies reckon this to be as high at £74-99 billion (Business in the community, Mental Health at Work 2019: Time to Take Ownership)

– One in eight 5 to 19 year olds had a mental disorder in 2017 (Government Statistical Service)

The figures above are just that – numbers. However they represent the pain of millions of people each year, the tragic loss of life; the prevalence and therefore importance of mental health issues. We all have mental health; at any time we could be forced to rely on the system, therefore we must ensure it is properly equipped to support us, and allow us to return as functioning and contributing members of society. In the last three months three of my friends have attempted suicide. Thankfully they are all still alive today, but as they were all already involved in the system before this and had been failed by it invariably, I also live in fear for them, and others – like myself – grappling with mental health issues. This affects all of us.

The main support I received for my mental health came from my school, simply because I was lucky enough to have understanding and empathetic teachers who always looked out for me. They kept me safe during manic episodes, kept me going during depressive episodes, and constantly took it upon themselves to educate themselves and offer me suggestions. However the level of care which they gave to me was not required of them, nor should it have been, and they are not professionals in the field. As the majority of young people spend most of their time in schools, however, it has highlighted to me the important role that schools play in supporting students’ mental wellbeing. Furthermore, stress is well known to have a negative effect on mental health, and the stress placed on students in competitive atmospheres only increases as they move up the educational system: how can we alleviate some of the pressure on students and make it part of the curriculum to provide them with coping skills? This is one example of how in improving the NHS system, we must also involve coordination across other aspects of society that support the wellbeing of our citizens.

I know that my teachers were unsure who to contact when I had a mixed episode (undiagnosed at the time) which left them bewildered and in fear for my safety. In improving the system we must raise awareness, and education is key to this as it allows us to reach so many young people. How can we ensure that teachers – all teachers – are trained to recognise early warning signs, and create a structure that would mean they are aware how to approach with empathy, knowing what their next steps would be? Within schools, how can we promote the tolerance and awareness of mental wellbeing in a dynamic, informed manner that fosters compassion? Perhaps required teacher training and reforms in PSHE would be a good place to start, alongside establishing schemes of referral and counselling in educational settings. However, we must also recognise the impact that a teacher’s role may be having on their mental health, and therefore I suggest that it should be the norm that educators are offered easily accessible support to help them, which would not only allow them to offer better assistance, but would also make them better teachers. Mental health is an intersectional issue that requires a multifaceted approach; I hope you will appreciate this, and start formulating ideas on how we can put this into practice.

Again I reference some quotes from my Instagram survey:

– ‘More investment in mental health training for teachers’

– ‘Talks for young people. They feel too’

– ‘Primary schools need to be more aware of mental health in my opinion’

– ‘Education beyond anxiety and depression because nothing else is talked about’

In terms of intersectionality, there are also clear trends among different demographics which should be addressed in formulating a plan for improvement. For example, the current protests have brought to my attention the disparities faced by BME communities in receiving mental health treatment:

– Risk of psychosis in Black Caribbean groups is estimated to be nearly seven times higher than in the White population (Mental Health statistics for England, Briefing paper 6988, Baker C., 2018)

– Detention rates under the Mental Health act during 2017/2018 were four times higher for people in the ‘Black’ or ‘Black British’ groups than those in the ‘White’ group (NHS, Mental Health Act Statistics, Annual report 2017-2018)

– 29% of Black/ Black British women experienced a common mental disorder in the past week, higher than for White British women or Other White women (NHS, Adult Psychiatric Morbidity Survey)

Once again this only scratches the surface, but the trend is clear. Research suggests that racism can have a very negative effect on overall health and mental health, and as BME communities are often more likely to be economically disadvantaged – and mental health issues more prevalent among lower income communities – this is sure to have an effect on these figures. Therefore in facing the problems with the system, we must also look to where we can alleviate stress elsewhere, by educating young people through schools and the wider population through schemes about racism and how to be anti-racist; by aiding those economically disadvantaged and perhaps putting further funding into the services in areas with lower average income; by actively reversing racism and increasing understanding of issues faced by BME people within the service. However, it matters what is then done with this funding as well – there should be clear cut structures that direct where the funding should be applied. For example – community programmes, hiring more nurses and psychologists, further research into the effects of medication and disorders, training/ encouraging the training of the next generation of mental health workers, improving training structures to implement the values of NICE that should already be put in place. We need to not only pledge to look into it, fund it, but also how the process should be guided, surely?

I could delve further into the intersectionality of mental health among LGBT+ communities (more susceptible), disabled people and their access needs, the workplace – but I feel by now you have gotten the picture. To finish I will cover the topic of diagnostic issues.

The process of my autism diagnosis was fraught since I was being assessed under a criteria developed based upon the experience of white males of a certain economic background. This is the case for the diagnosis of many disorders, for which the criteria is based upon outdated research of particular demographics. How can we work to reverse this and therefore provide a smoother process for all by being represented in research? Not only that, but I found that without a diagnosis, my concerns were brushed aside as ‘just a teenager thing’. Yet the diagnostic system is not clear on what should or should not be diagnosed in teens, so my diagnoses were almost impossible to achieve, and still I was left feeling that regardless of labels I should have been validated anyway. I then found that after each diagnosis, there was a definite lack of explanation to me and guidance on my next steps.

The end goal of psychiatry shouldn’t be diagnosis; all aspects of a person should be taken into account; those receiving such should be provided with clear understanding and guidance. Diagnosis also raises the issue of stigma in society – we are still afraid of labels, and yet invalidated without them. As already shown, mental health problems are so prevalent in our society that the very idea of them being a ‘disorder’ is arguably wrong and very damaging, causing divides where there needs to be acceptance and compassion. What can we do about this? There is a clear gap in the understanding around mental health that needs to be closed, which again brings me to the topic of education, and a supportive system at all levels so that the patient feels their individual needs are being heard and the preventable outcomes do not occur. Could research and community schemes help to bridge this gap?

From my Instagram survey:

-’They don’t do enough for people who have only recently been diagnosed with mental health and therefore it allows their mental health to get worse’

-’It’s important because young people’s lives are being ruined by lack of access and explanations’

– ‘STOP TELLING PEOPLE IT’S JUST HORMONES/ A TEEN THING it’s not helping anyone!’

Mr Holloway I thank you deeply for taking the time to read this email. I hope that you will understand the importance of what I am writing about and receive these points with an open mind. I look forward to receiving your reply. You are a leader, and I trust that there is the possibility for tangible change in opening discourse with you. In conclusion:

How can we improve communication across the mental health system and other sectors?
How can we use funding to improve the system?
How can we address individual needs?
How can we address the intersections of this issue to create a better society?
How can we improve the mental health system in conjunction with improving the educational system?
How can research help to overcome issues, and how do we ensure action is taken from it?
How do we overcome issues with diagnosis and stigma?
What can you do to lead this change?

If you would like me to clarify any points or forward my sources please do not hesitate to ask,

Kind Regards,

Millicent

Advocacy, Mental Health

I Want Change.

Posted on August 4, 2020August 4, 2020 by Millie :)

This was originally written as a post for Mental Health Awareness week on Instagram. It serves as an introduction to my Mental Health advocacy here at Our Happy Notes:

I’m an advocate for mental health awareness, but sometimes I feel as though I don’t know what to say or do. But I know what I want and I will build from there through myself, my community, and reaching out.

Positivity and compassion are important, but so is speaking up for change and against the romanticism of mental illness.

I’m fed up with all these ‘the true side of mental illness’ posts – no, it’s not the ‘truth’, it’s your experience; it’s just as damaging to say it is the only one. Fed up with toxic positivity telling us mental health can be fixed by self care. It will never be ‘fixed’. It will always be a part of us. All of us. Self care is not a singular solution, and we are not failures when it doesn’t take it all away or we can’t commit because brushing our teeth is hard enough.

Speaking about our experiences is valuable, because there needs to be a tolerance and dialogue, but more than anything there needs to be a system change. I want change. I would never choose to take my illnesses away because they shaped me, and they give me creativity and kindness, but I shouldn’t have had to arrive at that conclusion on my own.

It shouldn’t be down to a teacher to hand out all the real advice I’m getting – and only then because she’d experienced what I was going through herself. It shouldn’t be a system where we come away from each meeting feeling worse than when we went in, a three month check in from a psychiatrist you had to pay for with charity money otherwise it was an eighteen month wait and quite simply you would be dead by then, but all they did was make sure that you weren’t dead already anyway. Mothers shouldn’t be burdened with such worry when this is something that happens and can be supported. There should be research to prevent the endless trial and error of medications that messes around with yet another patient’s brain. For the kids who need understanding there should be explanations.

There should be staff for CAMHS and inpatient. When the teachers are so worried, you’re wondering what it might be like to fly, they’re talking about phone calls to parents and police – you shouldn’t be more afraid of hospitals than you are of dying. It shouldn’t have gotten to that point where you weren’t light enough, bad enough, clear enough, strong enough – teenagers shouldn’t have to be strong and blamed for their reluctance when all they’ve known is that they’re not enough. There shouldn’t be so many inequalities – any inequalities – in the system; so much lack of understanding of the challenges that Black people, LGBTQ+ people, disabled people face.

I want staff. I want research. I want money for the service and societal change led by a government that actually gives a sh*t and we need that now more than ever. I don’t want to see another friend grappling with a mental illness all alone. I don’t want the statistics for suicide and self harm to climb. I don’t want another overdose that could’ve been prevented if only they’d learnt how to cope. I don’t want them to be blamed anymore. I don’t want anyone to feel alone when they are not. To feel unsupported simply because of their identity.

I want change, and it starts with us. With our dialogue – led by love and compassion and a willingness to learn. I want us to be validated without labels, and yet unafraid if a diagnosis is present. I want the criteria for diagnosis to reflect the diversity of the people who might be diagnosed. I want understanding and support of mental health built into every facet of our lives, including where we are fighting for justice elsewhere, because these are not stand alone issues. The ‘mad’ people are getting mad, and they don’t want that. I want change.

– Millie