Letizia works with the ADASS Central team as Comms & Events Lead. Below, a blog about her experience in getting mental health support during the pandemic and as a person not previously known to services, with the hope that by sharing her personal experience, she will encourage you to rethink your approach to mental health, and perhaps to share your unique story as well.
November 4th, 2020. That was the first day my ADASS team realised something was wrong – I wasn’t smiling, barely talking, looking very distraught. If you know me, that’s not normal. It took me three months to regain some of my character; only now I’m starting to address how such a seemingly trivial event triggered this.
The man who claimed to love me, disappeared. The depression that followed was unbearable. I could not eat, sleep, think – focusing was such a task it drained all my energy. I wasn’t living.
I am one of those you call ‘person not previously known to services’ – a statistic that shot up during lockdown. I am not: I was first diagnosed with clinical depression at 13, only in another country. A complicated family history, an alcoholic grandparent, an abusive mother, repetitive bullying – a rape, an eating disorder and losing the sense of home, and belonging; but instead of dealing with trauma, I became exceptionally good at pushing it away. What happened in November just broke the seal: PTSD and depression ensued.
It was a huge relief when I finally put this experience into written words. Many who know me will be shocked at reading this blog and perhaps - that is exactly what I want. We need to be more comfortable talking about mental ill-health; stop considering it as a distant and intangible something that might happen to someone out there, but not me. We know that at least 1 in 4 people will experience a mental health problem of some kind each year in England; yet how many people can confidently stand up to say 'I have been through this. It's real, it's dangerous, I know how depression can wreak havoc in someone's life'?
This is precisely why I decided to share my story. We need to see that a strong, confident young woman was brought to her knees by mental ill-health - we need to normalise how challenging and painful this experience can be; and how frighteningly common it is. And while we attempt to remove the social stigma, we also can give a hard, critical look at the services we have in place to support that one-quarter of England's population that needs it every year.
This was the first time I reached out for help in the UK. It was… a journey. Sometimes I think if I didn’t have the support of my friends, the system would have just broken me down further, with good chances I would not be here to tell my story. There clearly is a lot of willingness to help and protect people with mental ill-health, but these efforts are minimised by an extremely impersonal and overly complex system that doesn’t support those needing help, nor those willing to provide it. The pandemic made it more difficult. But the enormous barriers I had to overcome to get help (which, spoiler alert – didn’t come) speak of a systematic and endemic problem rather than a situational challenge spiked by Covid-19.
But shall we go step by step?
November 6th. I can’t stop crying, I haven’t eaten or slept in three days. I need help. I try calling my GP, but the line has been shut off due to Covid-19. I go through a gruelling and impersonal online questionnaire, which suggests I should urgently call 111. Which I do – and after re-doing the same questionnaire twice with two different operators, I get transferred to a registered nurse who tells me – guess what? I should call my GP.
Luckily, I already had an appointment set. I’m not sure how else I would have reached out to my GP, given that the phone was off, and the online questionnaire only tells me to call 111. At the appointment, my GP diagnoses me with Major Depressive Disorder and PTSD – sets up twice a week check-up calls and refers me to a local talking therapy group.
Two weeks later, the talking therapy group finally reaches out for an assessment – I go through the same questionnaire before the operator decides my case is too complex and needs to be transferred to a more senior colleague. Three days later, it’s the same questionnaire and an update that my case is multidisciplinary and cannot be dealt with by the talking therapy group. They will email my GP to be referred to a specialist clinic (I’ll let you imagine how it feels like to be told that your brain needs professional, multidisciplinary help – whatever that means).
Twelve days later, the clinic rings. I get forwarded on three times, as apparently there’s never someone senior enough to deal with my case. The assessment is once more the beloved, repetitive, and impersonal questionnaire, and the resulting diagnosis is the same that my GP set out a month earlier. They will be in touch with options.
On December 12th, I receive the dreaded call. They’re very sorry, but there’s a 9-months wait to receive support, and they cannot help me. On December 12th, I seriously considered taking my own life.
I decided that my only option is to agree to an antidepressant treatment. I didn’t want to; I wanted to address my depression, trauma, and PTSD through therapy, but antidepressants were the only option. Two weeks later, I manage to find a suitable therapist and by January 12th, I am starting therapy at my own expenses.
Did you count? I filled in the same questionnaire 8 times, spoke to 10 people and 4 providers. The process of being denied help took over a month and a half. The support workers I spoke to were exceptionally empathetic, truly supportive. However, their hands were tied, and they couldn’t help me beyond offering a shoulder to cry on.
What really stood out is the harshness of the process, the numerous impersonal questionnaires, and the irrationality of the data collected. Not once did anyone ask me whether I could afford support – I’m in a lucky position to be able to spare a couple of hundred pounds a month for my own mental health wellbeing. Not once I was asked about my family history, or whether I had a support line. All it mattered was rating from 1 to 10 how sad my week had been. And above all – I had to explain my trauma to each person because no information was passed on.
If any of those questions were asked, you could have discovered that I do have an important family history. That my depression is age-old but situational. That I’m lucky to have a few friends I can ring in the middle of the night, and that I can afford to pay for a private therapist. I just didn’t know where to find one – how is it possible that the NHS can text me in no time five specialist options, with contact number, cost and location if I need a podiatrist, but can’t do the same for a psychiatrist?
Over the years mental health services have barely been taken seriously or developed to the best of what they could be. Even the simplest corrections, whether on service provision or data collection, isn’t actioned. The result is appalling, especially after a pandemic that has brought many public services to their feet and has heavily impacted the health and well-being of people of all ages, abilities, and colour. This is not acceptable; how many lives have we risked losing, or lost, because someone needing support couldn’t afford to, or didn’t have access to it?
What I would like to see change will not surprise you. I would like mental health care to be more human, focused around the individual and what they really need to stand up on their own feet. I would like it to be personal, and tailored to what a person can or cannot afford mentally, physically or financially. I would like it to be considered as any other physical disease, with keen and correct records kept to ensure that a person is treated to the best of our abilities.
A good first step would be to make services and options for treatment readily available; a list of options provided the moment someone asks for help. A simple text that illustrates private options in the area at various price points, for example - I can assure you that 50% of self-referrals would be happier to receive such personalised text over being told there's a 9-months wait for support. If a person cannot afford it, then whatever available option needs to be accessible and clear; it’s hugely problematic if we rely on the individual to have the capacity to search for hours to find a suitable answer to their distress.
Then, the process needs to be more humane. Fewer questionnaires, and more support in practice. The answers I give one week, need to be passed down from support worker to support worker, and from my GP to the next local mental health support organisation. Why do I have to repeat my difficult, painful story to 10 different people, when it could be summarised for everyone at first contact?
Third, we need to challenge the stigma around antidepressants and, if prescribed, it needs to be offered in conjunction with a compatible therapy plan. Relying solely on drugs - drugs that people don't want to take, or don't want people to know they are taking - is a short cut solution that will only risk a second, third or fourth referral down the line.
And last - we need to share our experiences. We need to talk about that shameful thought that popped in our head and wouldn't leave - we need to be open that the most trivial reason could cause us to lose faith in life. And we need to feel empowered that our struggle is real and personal, but that we are absolutely not alone. One in four people, each year, has experienced what we are experiencing - it's nothing to be ashamed of.
I am forever grateful for the support received, from the operators who took my calls, my friends, colleagues. Not everyone has that – if by reading this you decided to pick up the phone and reach out to a friend who needs it, I’m extremely glad to have done so.
Stand up for your friends, family, and communities; so that one day no life will be lost to depression.