World Mental Health Day 2021

‘MENTAL HEALTH IN AN UNEQUAL WORLD’

As I’m sure many of you know, today is World Mental Health Day and the theme, chosen by the Mental Health Foundation, is ‘mental health in an unequal world.’ WHO seems to be building it around the pandemic, rather than as a problem of its own, but from what I’ve seen in the newsletters and on the social medias of many mental health charities and organisations, most seem to be following the lead of the Mental Health Foundation.

According to the Mental Health Foundation’s website: “2020 highlighted inequalities due to race and ethnicity, sexual orientation and gender identity, and the lack of respect for human rights in many countries, including for people living with mental health conditions. Such inequalities have an impact on people’s mental health. This theme, chosen for 2021, will highlight that access to mental health services remains unequal, with between 75% to 95% of people with mental disorders in low and middle-income countries unable to access mental health services at all, and access in high income countries is not much better.” It goes on to say: “Many people with a mental illness do not receive the treatment that they are entitled to and deserve and together with their families and carers continue to experience stigma and discrimination… The stigma and discrimination experienced by people who experience mental ill health not only affects that person’s physical and mental health, stigma also affects their educational opportunities, current and future earning and job prospects, and also affects their families and loved ones.”

Statistics provided by Mind (x)


I have my own experience with the mental health system – which I do want to touch on – and have heard from many others about their experiences but I wanted to read into the research around these inequalities further, both to get a better factual understanding and to put my own experience in context (beyond an anecdotal one). The research is sporadic at best but here are some of the statistics I found…

ACCESS TO MENTAL HEALTH CARE

  • “NICE [The National Institute for Health and Care Excellence] recommends that people should be able to access services when they need them. However the proportion of people who felt they had definitely seen NHS mental health services enough for their needs reduced from 47% in 2014 to 43% in 2018.” (x)
  • In 2020, it was reported that approximately 1 in 3 people who experience mental health problems are able to access the support they need. (x)

From these statistics, it’s clear that far too many people aren’t getting the support that they need.

INEQUALITIES IN ACCESS TO TREATMENT (x)

  • For those with common mental health problems, 36.2% reported receiving treatment.
  • Women are more likely than men to receive treatment for all mental health conditions, with 15% of women receiving treatment compared to 9% of men.
  • Young people aged 16-24 were found to be less likely to receive mental health treatment than any other age group.
  • White British people are more likely to receive mental health treatment (13.3%) compared to BAME groups (7%). The lowest percentage of people receiving treatment were those from black ethnic minority groups (6.2%).

These statistics clearly show the disparities in the availability of treatment, more supporting evidence for the statement that the Mental Health Foundation is making with the theme for this World Mental Health Day.

YOUNG PEOPLE

  • “There is very little national information about mental health services for children and young people, and what information there is suggests quality is declining. [Research] indicates substantial cuts to services, increasing demand, increasing thresholds for treatment, very long waits (more than a year) for specialist services, and a resultant decline in accessibility.” (x)
  • Approximately 1 in 3 children and young people with a diagnosable mental health condition get access to NHS care and treatment. (x)
  • More than 338,000 children were referred to CAMHS in 2017, but less than a third received treatment within the year. (x)
  • Around 75% of young people experiencing a mental health problem are forced to wait so long their condition gets worse or are unable to access any treatment at all. (x)
  • In a YoungMinds survey, three-quarters (76%) of parents said that their child’s mental health had deteriorated while waiting for support from Child and Adolescent Mental Health Services (CAMHS). (x)

This research all indicates that young people in particular are being let down by the health care system.

SECONDARY [LONG TERM] CARE

  • Demand for secondary care (which generally treats people with severe mental health problems) is increasing, and there is evidence to suggest services are becoming less accessible… There is little information available on the outcomes that services achieve.” (x)
  • “There is no high quality national information on waiting times for secondary mental health services. In a 2014 survey, 20% of people with severe mental illness who were offered talking therapy reported waiting more than a year to access it.” (x)

The statistics show not just that the need for mental health care is increasing but the need for long term mental health care is increasing but that it’s also very difficult to access.

HIDDEN WAITING LISTS (x)

“A study of 513 British adults diagnosed with a mental illness also reveals the damaging consequences that hidden waiting lists – the wait between referral and second appointments – have on the lives of patients living with severe or common mental illness.”

  • “Of those on a hidden waiting list, nearly two thirds (64%) wait more than four weeks between their initial assessment and second appointment. One in four (23%) wait more than three months and one in nine (11%) wait longer than six months.”
  • Respondents living with severe mental illness – including eating disorders, bipolar disorder and PTSD – were left waiting up to two years for treatment. Others were left waiting up to four years for treatment for depression, anxiety and suicidal thoughts.”
  • Two-fifths (38%) reported that they, or someone on their behalf, had contacted emergency or crisis services while waiting for their second appointment, while 39% said that waiting led to a decline in their mental health.”

It’s clear that, beyond the difficulty of even getting into the mental health care system, once in it, the process of actually getting the support you need is much too slow – so slow in fact that it’s exacerbating the mental health problems that those waiting are seeking help for.


Now I want to look at my experience of getting support for my mental health…

  • For more than two years, I was repeatedly dismissed and had my feelings and experiences invalidated by multiple doctors and services. No one took me seriously. Eventually, my Mum took me to a private psychiatrist and I was diagnosed with Generalized Anxiety Disorder, Social Anxiety Disorder, Depression, and OCD. Having had no idea what I was struggling with, I’d done a lot of research and asked about the quiet presentation of Borderline Personality Disorder, which my psychiatrist initially rejected but then reconsidered and diagnosed me with it after reading my research and personal notes (it has since been recommended to me multiple times – sometimes by doctors who don’t even know me – that I have this diagnosis removed from my file because “people might make assumptions”). Getting an NHS referral for an Autism Diagnostic Assessment was similarly difficult as he felt that I didn’t fit the classic presentation (I do apparently fit the classic FEMALE presentation though).
  • There was no follow up after this diagnosis and we were told there was no support available so my Mum investigated private therapists. I tried CBT for a while but didn’t find it helpful so I tried DBT instead, which has been a much better fit.
  • All of this private treatment is obviously not cheap and I am so beyond grateful that my family is fortunate enough to support me financially. I honestly don’t know where I’d be without it, whether I’d even be here. But the cost of it does cause me significant worry, only adding to the anxiety I already experience.
  • With so many of my problems connected to my Autism, had this whole process been… easier, simpler, quicker, less traumatic, or something… so many of my health problems wouldn’t have deteriorated to the level that they have. Had I been diagnosed earlier – had even one medical professional believed me – things might’ve been so different. I try not to dwell on that because there’s no point wasting my energy on what might have been but it is the truth.
  • Having said that, considering some of the stories that I’ve read or have had shared with me, my story isn’t that bad. I’m positively lucky compared to some and that’s a confusing, complicated thing to say, knowing how traumatic this has all been… and continues to be.

Since then, I’ve developed near constant chronic pain throughout my body – something that’s obviously had a big impact on my mental health – but over a year later, I’m still waiting for the NHS physiotherapy and hydrotherapy referrals to go through. I have started Occupational Therapy and with the Pain Clinic (both through the NHS) but with the end of my Masters, I had to take a break because they were too painful and/or upsetting to manage alongside all the work. I’m starting back this week. It still bothers me that no one’s ever even tried to find out why the pain started though.

Almost six years after my ASD diagnosis, the Neurobehavioural Clinic called to offer me an appointment, to do what I had no idea. But at the end of the two part session, I’d been diagnosed with Hypermobile Ehlers-Danlos Syndrome and ADHD – aged twenty six – both conditions having gone unnoticed because no one had ever taken my associated problems (problems that have been there my whole life) seriously. They’re both conditions that often occur alongside ASD. The hEDS diagnosis would, in theory, push my physiotherapy and hydrotherapy referrals but, as I said, I haven’t heard anything and almost a year later, my ADHD is still untreated. My psychiatrist was happy to ‘move’ that condition to his care but the consultant I saw didn’t want that, which is especially frustrating because she’s so difficult to get in contact with.

And finally, I may be getting answers to another ongoing medical problem: severe dizziness, light-headedness, nausea, physical weakness, and breathlessness when I stand up for too long. We’ve been trying to get support around this for so long that I can’t even remember when it started. This too may well be related to my Autism and I can’t help thinking that it’s another thing that should’ve been discovered sooner.

All of these things have had a profound impact on my mental health and going through the agonising process of diagnosis again and again has left me wary, fearful, and angry at medical professionals. It’s deeply ingrained in me to be polite and respectful but it doesn’t take much to send me flying off the handle; I walk into each appointment feeling like a tightly coiled spring. I leave pretty much every appointment in tears at best, raging at worst. Because I’m so. freaking. tired. of feeling like this. Of feeling like no one believes me, of being made to feel like I don’t know what I’m talking about, of being made to feel like I don’t know what I’m feeling. I feel so worn down by the constant let downs. At this point, I think I’m only going back because I don’t know what else to do.


I have no doubt that social media will be filled with nice words and encouraging quotes today. But we need more than that. World Mental Health Day is about more than that. Or it should be. It should be about pushing for change and improvement. The Mental Health Foundation is absolutely right that the inequalities in the mental health care system need to be addressed but looking at these statistics, it’s also clear that the standard of care needs to be better. For everyone’s sake. After all, there’s very little difference between not getting any support and being on a list waiting years for support.

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The DSA Process For My Masters Degree

Since the academic year is starting up again, I thought I’d write about my experience with getting support for my Masters Degree as a disabled student. The DSA (Disabled Student Allowance) process can be very difficult so, having been through it twice now, I thought I’d share my experience. I don’t know if I’ve had a good, bad, or typical experience but I thought that simply putting the experience out there might be helpful to anyone at the beginning of this process, to give them an idea of what may happen down the line. As I’ve already said, it’s difficult and tiring but that’s not to say that I would discourage someone from applying. I was just very naive going into it the first time and was blindsided by how complicated and stressful it was; I’m lucky to have had help going through this both times. Having support from sources such as DSA can be hugely beneficial but I wouldn’t want anyone going into the application process unaware so I thought I’d share my experience as I haven’t seen many accounts of the whole process…

I wrote about my first assessment in great detail here, so I suggest reading that but I’ll also sum it up here to make sure I’m sharing the full experience in one place. So… That first assessment was a complete disaster. The assessor was perfectly nice but when we got to discussing what support DSA was willing to offer me, it went downhill fast. They would offer me a laptop, but not one with an operating system required to run the programs I needed for my course because apparently that was a course specific need rather than a disability specific need despite the fact that I – a disabled student – needed them to do my course. They wouldn’t offer me any travel support towards commuting because I’d ‘chosen’ to live at home when I actually had to live at home because of my disabilities. And they have no direct contact with the universities themselves so they couldn’t offer any support through them. So, essentially, they weren’t going to offer me anything because my needs didn’t fit their guidelines, because my disability didn’t fit with their idea of disability. It was hugely frustrating and distressing and I left in tears. I felt completely let down and abandoned.

By the end of the assessment, I was so utterly distressed that the assessor told us that we could appeal, which we did. The second assessment was with a different person, a really lovely woman called Rebecca, and was much longer and in much more depth. We went through everything again in minute detail: from the necessary computer specifications to the exact details of an average university day’s travel. She went through all the possibilities and all the potential outcomes, as well as the potential roadblocks and the reasonings behind them. It was a lot of information but I did leave feeling more hopeful; I really felt like she was on the case, like she was really committed to helping me get as much support as possible. Her report went through several different people before reaching a senior SFE (Student Finance England). It was initially rejected but then, when we provided them with documentation proving I receive PIP (Personal Independence Payment), they changed their minds and granted me a new laptop, software and apps to help with my lectures, independent study, and mental health, and mentoring through the National Autistic Society (although it seems that, due to the pandemic, this service no longer exists). I didn’t get any support for the travel but I’m grateful for what I did get, plus the travel costs haven’t exactly been an issue over the last few months… From that second assessment, it was four months before I received the support I was awarded.

In my experience, the whole DSA process is very slow. It was slow when I went through it during my Bachelor’s Degree and it’s been even slower this time, presumably due to the pandemic. I started this process in January – much later than intended but my mental health was so bad that I couldn’t handle the in person assessment – and didn’t get the equipment until June. Then the laptop that arrived wasn’t the right one and so we had to spend another two weeks – and a somewhat ridiculous amount of emails proving that it was in fact the wrong one – organising the swap, insuring that I got the one that my DSA assessment had determined I needed. A couple of weeks later, the new laptop arrived but setting it up took much longer than it should have. This was due to how the people who’d previously worked on my laptop had set it up, making the transfer of all my files much more complicated and messy. It’s still not as sorted as I would like it to be but it is functional.

Factoring in all of this, had I been doing my Masters in one year rather than two, I would’ve had this equipment for less than a semester before I finished the course. Yes, this was affected by the pandemic, problems with the university Autism support person, and the late start in pursuing DSA but that was due to the reasons I was in need of support so it’s not the most efficient system in that regard: what happens if you’re too disabled by your disability to seek help?

The laptop and software that DSA have provided me with has been invaluable, especially since my laptop was dying a slow death around the time I received the new one. We didn’t get everything we were hoping for but it’s definitely better to have it than to not. So, having now been through this twice, I thought I’d offer some tips that would’ve been helpful to me before going through the process…

  • If you disagree with part or all of the final assessment, ask to talk to someone else – It’s not something you’re necessarily made aware of when you have the assessment but I was so distressed by the end of the assessment that the assessor told us we could appeal. My second assessment yielded quite different results than the first one so it’s definitely worth asking if you feel that you haven’t been heard or fully supported.
  • Ask what kind of documents act as proof of a need for support – The earlier you find out what paperwork might help your case, the quicker the process will go. We, unfortunately, didn’t know that the PIP documentation was helpful and the whole thing may not have taken so long if we had.
  • Take someone with you as it can be overwhelming and tiring – These assessments can go on for hours and there’s a lot of information to both give and receive. Plus, it can be a pretty emotional experience so having someone with you can make the whole thing easier; you have someone to lean on and two pairs of ears to take everything in.
  • Ask for everything that you would find helpful – You might not get it all but you definitely won’t get it if you don’t ask and hopefully you’ll get some of it. It’s also always worth asking what you’re potentially entitled to because there may be things you aren’t aware of that could be helpful.
  • If you’re told something isn’t possible, ask why – The assessors can’t know every relevant question to ask and you can’t know every relevant piece of information to give so if they tell you something isn’t possible or available, it’s worth asking why because you may have some information or some paperwork that changes the situation and what support you can get.

I hope this post is helpful for anyone considering or going through the process. I hope I haven’t made it sound too scary. I really do recommend it but I wouldn’t want anyone to be unaware of how difficult and stressful it can be. You deserve to get the support you need and I only want to make that easier, if only by arming you with information and advice. So, if you’re going through it, I wish you the best of luck and I’m rooting for you.