‘I was let down so many times by the NHS that I nearly died’

“Just get help, Abi. Get help.” That phrase will forever make me sad. I have heard it repeatedly from friends and, once, a boyfriend I loved desperately, as he left me in hospital, never to be seen again.

It’s not their fault. I have complex PTSD and finding help for mental ill-health on the NHS – there’s a difference between ‘mental health’ and ‘mental illness’ – has been exhausting, emotionally shattering and frankly impossible.

Mental illness is not like having a broken leg; the exact problem is not immediately apparent even to those closest to you. I’ve struggled to keep my mental health stable since I was a teen for a number of reasons, including a tricky childhood and then being raped nearly a decade ago. I knew the perpetrator and was drunk, so was too scared to report it or tell anyone due to the shame – keeping that memory suppressed was the biggest mistake of my life.

Mental illness is subjective and difficult to deal with. It can turn you from a “normal” human being into a monster. It doesn’t respect rational thinking and doesn’t get better with yoga and fresh air. A crisis can happen any time of the day, at weekends or bank holidays.

For 20 years, my occasional bouts of clinical depression were rectified with medication and therapy until when, in early 2018 aged 43, I suffered a complete breakdown. For two years, I struggled desperately to get help and follow the NHS “pathway” of GP, telephone counselling, community and acute mental health services and hospitals. But I was let down so many times I nearly died. An over-run mental health service, with psychiatrists who simply treated what they saw with medication rather than look at “why”, made things worse.

Much as I tried to work with the NHS, they wasted my time, and their money and resources, through incompetence and bureaucracy.

I was given drugs for my symptoms (insomnia, depression, agitation, aggression, anxiety, suicidal thoughts) that left me with horrendous side effects. Once, after an NHS psychiatrist prescribed antipsychotics to “calm my mood” on a Friday afternoon, I spent an entire weekend alone, unable to sleep, hallucinating and terrified, unable to reach the same doctor for help. When I saw him again, he (wrongly) diagnosed borderline personality disorder based on two 20 minute appointments and the hallucinations his drugs had caused. His fleeting assessment and diagnosis overruled an onerous, 12 week assessment with another NHS psychologist who had already diagnosed me with severe depression and PTSD.

I was batted from pillar to post on a daily basis with a startling lack of continuity. Even the mental health nurse assigned to “coordinate” my care routinely arrived hours late, cancelled or missed appointments. She was undoubtedly doing her best but it was enough to derail anyone.

I’m self-employed and my brain was such a scramble that I struggled to work; the simple “get help” missive was a full-time job. Only my family have known the struggle I was having with the system; to outsiders it seemed I was simply wallowing in despair.

Beyond desperate, after losing everything in 2019 – my partner, my social life where I lived in Hampshire and any shred of self-esteem – I stopped the frenzied interaction with NHS mental health services, got a new GP and resolved to find private help.

An ex-military friend had long been adamant that my symptoms – including crippling anxiety and mood swings, lost confidence, social isolation and persistent nightmares that rendered sleep impossible for two years – were down to PTSD.

I got myself well enough to research a psychiatrist, Prof Gordon Turnbull, who specialises in PTSD and trauma. With a fascinated, enquiring and curious mind he asked about “me”, almost ignoring the symptoms which he recognised as being caused by trauma and medication.

He diagnosed complex PTSD, stopped my nightmares within two days (through timely use of a beta-blocker), “prescribed” a form of therapy similar to EMDR called Emotional Freedom Technique (EFT) and a year later I’m working full time and operating near-normally. I still have the odd bad day but generally they pass quickly and I know a bright future lies ahead. I take only vortioxetine, a new, well-tolerated antidepressant with no side effects other than making me feel sick for 30 minutes after taking it (The NHS can only prescribe vortioxetine if two other antidepressants have first “failed”).

It’s hard to write about dysfunctionality within an NHS that is battling its way through a pandemic. To criticise doctors and nurses who have saved my life while working themselves to the point of exhaustion on often bad pay is sacrilege. But thank goodness I had the resources and wherewithal to go private.

Increased funding and provision for NHS mental health services is coming, but it’s not enough and I’m horrified that face-to-face assessments with GPs are being ditched. A phone call or online chat is not “help” when you’re depressed, anxious and possibly suicidal.

My friend Tom Robinson, a former European junior champion three-day-event horse rider who is now in remission from bipolar disorder, agrees. “I was first diagnosed with ‘simple depression’ 20 years ago and a lot has changed since then. Not enough questions were asked at the outset. Over that time I’ve seen more than 20 different psychiatrists because of differing NHS services over weekends and holidays – just getting a response to a phone call takes hours, days or weeks. When you are in crisis you need help instantly,” says Tom, who writes a blog dyingtostayalive.com in the hope of raising awareness of mental illness.

Back in 2011, I was one of the first journalists to write about depression, and the response was startling. People didn’t know what to say. One employer accused me of not making him aware of my condition, saying he wouldn’t have hired me had he known. A friend who stumbled across the article online suggested I had it removed in case potential boyfriends saw it.

But why should I feel shame? I have been very unwell and it would all have been in vain if I can’t help to improve others’ understanding. The effects of physical illness are understood, and we know dementia and Alzheimer’s changes brain functionality and behaviour, but the symptoms of conditions like PTSD, schizophrenia and bipolar disorder are still overlooked, mis-judged and stigmatised.

Mental ill-health is not going away, it’s getting worse: latest ONS figures show that more than a fifth (21 per cent) of adults over 16 have experienced some form of depression in the first quarter of this year, up from 10 per cent between July 2019 and March 2020. Younger adults are worst affected, with 43 per cent of young women aged 16 to 29 and 26 per cent of men the same age reporting symptoms. Despite this, fewer people told their GPs and diagnosis of depression fell by 23.7 per cent.

Improvements have been made since I first started to struggle 20 years ago. The NHS has launched a new online hub for people to get the most up-to-date details on how to access mental healthcare and, in their Long Term Plan, NHS England has pledged that “at least 50 per cent” of people who experience psychosis for the first time should start treatment within two weeks of a referral, and that 75 per cent of those referred to psychological therapies begin treatment within six weeks.

But those numbers are not good enough. What about the 50 per cent of psychotic patients who aren’t seen? Or the 25 per cent of patients who don’t receive a referral? What about the patients who have developed symptoms of mental ill-health during Covid going undiagnosed or undetected thanks to referrals by an online chatbot?

An NHS spokesman told me that NHS England’s Long Term Plan commits to an additional £2.3bn for mental health services a year “to ensure that two million more people can access services” and this week’s Queen Speech referenced measures being brought forward to support the mental health of the nation. But the fact is the NHS is too slow-moving both in individual patient care and in bolstering support — there are still only 92,278 dedicated mental health staff out of 621,962 NHS professionally qualified clinicians.

I don’t pretend to know the answers but improving the mental health of the nation needs to start with the elephant in the room; unwieldy NHS bureaucracy. Not pointing fingers at overworked and underpaid medical staff.

Three years on, I’m unrecognisable from the person I was in 2018. I was able to afford treatment and lockdown gave me the time and space to get better. I’ve been one of the lucky ones.