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
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