I have spent almost half my life ‘within’ the NHS mental health system. For over 15 years I have needed and depended upon its services and support. If I reach a state of crisis, I have to attend their facilities. And I have been many times. I have had severe depression, self-harmed and attempted to take my own life on several occasions.
Over the years I have seen both the good and not-so-good sides of the institution. I have been the subject of physical restraint procedures, now disallowed, such as being forced face-down onto a bed. But I have also been the recipient of individual acts of kindness, and the official protocols have improved as well. In fact, notwithstanding some blips, I believe I was getting ‘better’. I saw the power and positivity of ‘good mental health’ practices, and before March 2020 was doing a course with the aim of becoming a counsellor.
However, during the past three years of Covidian madness I have been exposed to a side of the mental health establishment that I can only describe as systemically and institutionally abusive, with some staff who seem to have either lost – or never had – the most basic qualities of empathy and consideration for vulnerable people in their care. How else would you describe a situation where, having recently tried to kill myself, I was sitting in front of a doctor, tears running down my cheeks, begging to be allowed to remain maskless, only to be told that she “had a duty to protect and keep safe people vulnerable to the virus”?
In mid-2020, when mask mandates began to appear, I contacted my local NHS Trust, Mersey Care, to clarify my situation regarding exemption. Their reply reassured me that, as I was legally exempt, I would have no difficulty accessing their services or buildings. They further buoyed me by saying that this was official policy and would be communicated to all staff within the trust.
Hearing this was an immense relief. My conditions include Emotionally Unstable Personality Disorder as well as anxiety and I have a history of trauma with symptoms of PTSD. Wearing a mask – and being around others wearing them – is extremely challenging.
Without seeing facial expressions, communication becomes very difficult, and my anxiety causes me to experience panic attacks which masks and shields ramp up in their intensity. Basically, masks trigger flashbacks, which lead to panic attacks which in turn result in me hyperventilating. I become dizzy, feeling like I’m suffocating.
It’s distressing and I cannot focus on anything around me. I’ve tried to wear a mask, but the longest I’ve managed to go without experiencing these symptoms is a couple of minutes.
I can’t use face shields because my breath fogs and becomes humid which triggers the same problems. It’s an endless and escalating feedback loop of alarm and confusion.
A little later, during a time of great personal crisis, I had to attend my local psychology services department. The Psychology Services Hub acts as a sort of therapeutic community, one that I’d been familiar with, both as a patient and a service user lead volunteer, for many years. Indeed, as the two senior managers of the hub had been therapists of mine, I was well-known.
Feeling very suicidal and having let them know in advance that I wouldn’t be wearing a face mask, the day I was due to attend an assessment meeting my urgent appointment was delayed for several hours. The reason for this, I was told, was so that the “team could debate allowing me in”. On this occasion they did permit me to enter the building. However, the next time I needed help with my intense suicidal feelings it was made clear that without a face covering I would not be admitted.
Pointing out that I had emails from Mersey Care’s Infection Prevention and Control (IPC) team confirming my exemption made no difference. Nor did quoting the 2010 Equalities Act. I was not to be allowed in without a mask.
In the middle of June 2020 I submitted a complaint to Mersey Care’s Patient Advice & Liaison Service (PALS). I was contacted by the IPC team, receiving emails and phone calls, as a result of which I was assured that the trust was reminding all staff that mask exemptions applied to all buildings and services.
Some Mersey Care facilities, for example Life Rooms in Bootle, honoured these commitments and allowed me in without a mask. My hub did not, and despite calling IPC and PALS repeatedly it took 17 months for a response to my complaint to be given.
During those 17 months my mental health deteriorated badly. It is difficult to put into words just how devastating this was. Ironically, at a time that I was starting to do well with my mental health, it was the catalyst that resulted in a complete breakdown. I think it was the shock of discovering that, of all the people in the world who I thought would be compassionate and understanding about this issue, staff at the hub, part of an NHS mental health trust, were the worst. Even Sainsburys, with their signs and loud-speaker messages reminding shoppers to be mindful that people not wearing masks could have hidden disabilities, made me feel safer and more welcome. What had it come to when supermarkets are more understanding and reasonable than a mental health service?
I completely lost faith in the service. I lost faith in people. I felt strongly that if mental health care professionals would not accept my mask exemption on the grounds of mental health, then no one would. I became terrified of judgement from other people. If the mental health services could be this harsh and discriminatory then what would I face from strangers?
In addition, I became isolated, sometimes going eight weeks at a time with zero human contact. My panic attacks became more frequent and more intense and I eventually reached a point where I was too afraid to leave the house by myself and do basic things like go shopping or pick up medication for fear of judgement and lack of understanding from others. I developed agoraphobia and I became addicted to anti-anxiety drugs as sometimes they were the only way I could manage to do something as simple as food shopping by myself.
I was too afraid to access any kind of healthcare. Simply, I came to feel that I wasn’t legally allowed to access services and I was terrified as to how Mersey Care would act towards me. Surprising as it might be to someone who hasn’t seen the mental health system from the inside, patients who come to be viewed by staff as ‘troublemakers’ may find themselves on the receiving end of retributive action. Those who are considered to have broken ‘community rules’ may be suspended or excluded from accessing services.
Because I was too scared to attend the surgery, when my GP wrote to me about things like smear tests or check-ups, I ignored the letters. In December 2020 an untreated UTI led to a severe kidney infection that, because I delayed seeking help for too long out of fear, eventually left me in hospital for a week.
At the same time my mental health declined further. I began self-harming again and made attempts to end my life. Often taken to the hospital forcibly by the police because of the fear I developed, I was sectioned and hospitalised on multiple occasions.
Eventually, in November 2021, after numerous chasing emails and calls, I found out that Mersey Care had not upheld my grievance. It remained a requirement for me to wear a face mask or shield to visit my hub. The reason for rejection? Mersey Care’s Ethical Cells Committee, acting on advice from the trust’s legal team, determined that Mersey Care had a “duty of care towards other service users”. That’s the sum of it. No evidence underpinning this decision was provided. My wellbeing counted for nothing: not even a proper explanation.
At the same time as I received this rejection I was told by the doctor who runs the hub service that he interpreted my complaint as an “act of hostility” against himself. I was warned that if there was any further “hostility”, I risked being discharged from Mersey Care services all together.
Angered by what I perceived to be an injustice, I did contact a national legal advice line, but they told me that because my case had a less than 50% chance of winning in court, they would not provide me with legal aid. I have no funds to hire a solicitor independently.
Taken as a whole, I am left wondering just how a mental health trust can be so uninterested in its clients’ mental health. Perhaps its promotion of support for people struggling through the pandemic, its trumpeting in the 2019/20 annual report of “zero suicide” ambitions and statements about “striving to provide perfect care and a just culture”, and its boasts that it is “committed to equality and ono-discriminatory behaviour” is all just window dressing?
Since the start of the Covid period I have come to feel as if, like a leper, I’ve been cast out. Not only did my conditions make it impossible for me to function while wearing a mask, my own research told me that masks offered no positive benefits. At home I watched morning TV and heard so-called ‘celebrities’ declare that “people who don’t wear face masks should be in the stocks, in prison, or hanging in the streets”, and when expressing my scepticism about the effectiveness of the COVID-19 counter-measures to Mersey Care, a doctor asked me, with an exaggerated eye roll, “Are you a QAnon person?”
I am the one who, because of my conditions, is supposed to be irrational; yet I have asked myself many times why people working in a ‘caring profession’ and who profess to be scientific in their approach should act with so little feeling and so little logic. The only answer I can think of is that this matter is now personal, not professional, between us, and they really don’t care what I think or how I feel. Perhaps the alternative, that they really are this lacking in basic humanity and so fully absorbed into the Covidian sect created by the Government’s propaganda and manipulation, is too shocking to contemplate.
The author is a supporter of Smile Free, which campaigns for the end of mask mandates and masking.