Mental Health Awareness Week: The Exclusion of Mental Illness and What We Should Be Talking About
It is the start of Mental Health Awareness Week.
It is good that more people are talking about mental health now than in the past. It is good that there are conversations taking place about how to look after your mental health. It is good that people are talking about how important mental health is.
But the above conversations do not go far enough to include people with mental illnesses, particularly those with severe and enduring mental health conditions.
“For Mental Health Awareness Week, we want to get the mental health conversation moving on to mental illness. Improved knowledge and understanding of common mental health issues like anxiety and depression has undoubtedly helped a lot of people. But what about issues affecting those of us living with severe mental illnesses like schizophrenia, OCD or bipolar disorder? Despite around 1 in 10 adults in the UK experiencing severe symptoms of mental illness, we still feel left behind in the conversation.”
Experiences and thoughts shared by individuals echo the above:
“#Mentalhealth charities & awareness campaigns have done a good job. But there is an urgent need for a new generation of campaigning to emphasise the needs of folks with severe #mentalillness - their ongoing needs. Folks with SMI can lead good lives. With the right care and support.
How can organisations that see their remit as covering “exam stress” also campaign - in an effective, meaningful way - for improvements in the lives of folks currently left to suffer unbearably before dying decades early? Are there equivalent organisations for “physical health”?”
“This is one of the topics we should really be talking about during #MentalHealthAwarenessWeek. The damage that untreated/undertreated/or prolonged mental illness does to us physically as well as mentally.” - Dr Annie Hickox quoting Cara Lisette’s post:
My diagnosis predicts I’m likely to die 20 years earlier than average and I can’t get life insurance. I have permanent physical health damage from my eating disorder and have had to take long periods out of education and employment that has slowed my career progression.”
“I hate this. Mental health week is no longer about mental health, especially for those of us with serious mental illness. It’s about mood. This is so exclusionary & stigmatising of those of us who are seriously mentally ill & unable to safely engage in movement” - Linka on the theme of the week being ‘movement’”
Talking about the value of nature, the importance of looking after your well-being and exercise is great - in the right circumstances. But why does Mental Health Awareness Week seem to solely focus on this, when it could be harnessed to reduce the stigma of mental illnesses, helping people to understand symptoms, and how to support those with severe mental illness? Much of the general public still believe that most people with Schizophrenia are dangerous, rather than them being more likely to be victims of crime. Many of them do not realise there is a lot more to OCD than liking things tidy. Many question if they have Bipolar after a bad day.
So what SHOULD we be talking about?
The impact of social inequality and poverty on mental illness. Poverty can both contribute to and be an effect of mental illness. People within the poorest fifth of the population are twice as likely to develop mental health problems compared to those on an average income (Public Health England, 2019). Young people in the lowest income bracket are four and a half times more likely to develop severe mental illnesses (Gutman et al. 2015). Nearly 140,000 British children are now homeless, living in ‘temporary accommodation’, a ‘record high’ (Woodhead, 2023). Those living in most deprived areas and lowest socio-economic groups are up to 10 times more likely to die by suicide (Samaritans, 2017). Social inequality and poverty cannot be removed from discussions around mental illness, when they are so interlinked.
Suicide rates in England are the highest they have been since 1999 (Office for National Statistics, 2024), as Louis Appleby (ProfLAppleby) explains they have risen by 6%. Deprivation, financial difficulties and inequality increases suicide risk (Samaritans, 2024), and considering that poverty and inequality is increasing in the UK (Local Government Association, 2021), this desperately needs tackling.
Waiting lists. Over 2 million people are waiting for NHS mental health services, and since 2017 the number of young people struggling with their mental health has almost doubled (Mind, 2024a). Nearly half a million children are waiting for treatment. In eleven areas of the UK, there are waits of more than four years (Thomas, 2024).
The government is failing young people. The proportion of children aged 7-16 years old with a probable mental health condition rose from 12.1% in 2016 to 18% in 2022. In those aged 17-19, it rose from 10.1% in 2017 to 25.7% in 2022 (NHS Digital, 2022a). As stated above, nearly half a million children are waiting for mental health treatment. Financial difficulty has influenced this. 14.8% of 17-22 year-olds with a probable MH condition reported financially struggling to buy food or having to use a food bank compared to 2.1% of those without a MH condition, and 13.6% lived in a home which could not afford to keep the house warm compared to 6% of those without a MH condition (NHS Digital, 2022b). Furthermore, youth service funding has been cut by £1.1 billion in the last 10 years (YMCA, 2022) and demand on young carers has increased since COVID, but support hasn’t (Carers Trust, 2020).
The inequality, racism and discrimination that Black people with mental illness face. Black people continue to be more likely to be detained under a Section 136 (police section), to receive a Community Treatment Order and to be sectioned repeatedly (Mind, 2024b). Please read The Black Mental Health Manifesto here.
“Many mental health initiatives, reforms, and services have not yet been able to address the needs of black people who experience mental health problems in England...It must be accepted that racism and discrimination are often at the heart of why Black people face inequities and there are growing calls for racism to be regarded as a structural and social determinant of health, including mental ill health.”
The Mental Health Act needs reforming. Eight years ago, former Prime Minister Theresa May made the commitment to ‘modernise’ the Mental Health Act. In 2018 an independent review panel made recommendations. It took until 2022 for the government to publish a draft Mental Health Bill. But nothing has been done. Black people continue to be disproportionately detained under the Act. Those in more deprived areas are 3.5 times more likely to be detained, and young people, autistic people and people with learning disabilities are inappropriately detained miles away from home (Mind, 2024b).
“Eight years since the former Prime Minister Theresa May committed to modernising the Mental Health Act, and five years since the Independent Review, we are still waiting for the Government to fulfil its promise.
The current Mental Health Act – now 40 years old – reinforces mental health inequalities, with its disproportionate use among racialised communities and particularly Black people. The comprehensive review outlined changes to better safeguard people’s rights and dignity which are long overdue.”
Severe mental illness, such as Schizophrenia, Bipolar Disorder, psychotic disorders, severe OCD, etc. This doesn’t mean that anxiety and depression can’t be severe/serious. But understanding that generally there is a difference between common mental health problems which many more people experience, are often short-term and more easily treated, and severe mental illness (SMI) is important. SMI tend to be more stigmatised, and are associated with a lack of social support, repeated hospitalisation, not being able to work, homelessness and substance misuse (Evans et al., 2016). Individuals with SMI experience disparities in healthcare and statistics suggest they have a reduced life expectancy of 10-25 years (Sippel et al., 2023).
The stigma around personality disorders contributing to poor care, institutional harm and even death. And I don’t just mean stigma from the general public, but stigma within the mental health system. Sadly, far too many inquests have highlighted its devastating effects (Thomas, 2019).
“Three years ago INQUEST confirmed what we already know. The BPD construct is often, and increasingly, a factor in iatrogenic harm leading to death. There is no doubt this on the increase as BPD is used as an excuse for poor care in overburdened systems where seeks an outlet.”
“She was diagnosed late, repeatedly labelled with a personality disorder that she did not have, and the stigma around this led to her being harmed. Fern was open about her suicidality, yet she was not taken seriously. The misdiagnosis of personality disorders must end, as must the punitive and dangerous culture of care which comes alongside them. Fern felt very strongly about this.”
The link between autism and ADHD and mental illness. There are high rates of mental illness and suicidality amongst autistic people (Lever & Geurts., 2016; Cassidy et al., 2014). I won’t go into detail as to why here, because I just wrote a whole blog post on it, which you can read here. But the same is true for people with ADHD, who have a 5 times higher risk of attempting suicide (Fuller-Thompson et al., 2020). There needs to be consideration of the 30% developmental delay in ADHD brains, the effect of rejection sensitive dysphoria, the impact of children receiving 20,000 more negative messages by the age of 12 than their peers, long waiting lists affecting access to support, increased risk of drug/alcohol abuse and the effect of impulsivity on an individual’s life, as Leanne Maskell (founder of ADHD Works) explains. (Ng, 2024).
Autistic people are too often misdiagnosed and unrecognised. A recent study found that 1 in 5 people referred to an outpatient psychiatry clinic met the criteria for autism (Nyrenius et al., 2022). That suggests a lot of autistic people are accessing mental health services and not being recognised. A recent study found that 1 in 4 autistic patients felt they had been misdiagnosed prior to their autism diagnosis, and 17.9% of autistic women felt they had previously been misdiagnosed as having a personality disorder (Kentrou et al., 2024). Misdiagnosis can be harmful, as it results in inappropriate treatment being offered (Au-Yeung et al., 2018) and therapies not being adapted for autistic people (Bargiela et al., 2016).
Understanding the menopause as a trigger for significant mental health challenges. The change in hormone levels and decline in oestrogen in perimenopause can trigger new psychological symptoms, such as anxiety, suicidality, paranoia, dissociation, and even psychotic episodes, as well as increase the risk of relapse in those already living with mental illness (Behrman & Crockett, 2023). Yet, for a long time, the menopause has been widely ignored and under-treated, with there being a lack of knowledge and understanding amongst some healthcare professionals (Barber & Charles, 2023).
While Mental Health Awareness Week focuses on ‘movement’, nature, walking and well-being, people suffering from mental illness continue to be stigmatised and misunderstood in society. If this week isn’t the time to try to alleviate some of that stigma, push the government to tackle poverty and inequality, and work towards a better future for those with severe mental illness, then when IS the time?
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References:
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Barber, K. & Charles. A. (2023). Barriers to accessing effective treatment and support for menopausal symptoms: a qualitative study capturing the behaviours, beliefs and experiences of key stakeholders. Patient Preference and Adherence, 17, 2971-2980. https://doi.org/10.2147/PPA.S430203
Bargiela, S., Steward, R. & Mandy, W. (2016). The experiences of late-diagnosed women with autism spectrum conditions: an investigation of the female autism phenotype. Journal of Autism and Developmental Disorders, 46(10), 3281-3294. https://doi.org/10.1007/s10803-016-2872-8
Behrman, S. & Crockett, C. (2023). Severe mental illness and the perimenopause. BJPsych Bulletin, 1-7. https://doi.org.10.1192/bjb.2023.89
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