I have been let down by crisis, primary and secondary services. The system is fundamentally flawed and its flaws left me and my friends in a situation none of us should have been in. This system is not sustainable. I am not a statistic, I should not be represented by a test score, I am an individual who has a mental illness as a disability and has been left with minimal support for twenty-one of the twenty-four months I have been ill. Subsequently I have lost friends, missed out on many opportunities and struggled to get through day to day life. Something needs to change. Being mentally ill is hard enough without coming up against a system that is so resistant to helping you.
In November 2017 I was placed on an NHS for cognitive behavioral therapy (CBT) through IAPT (Improving Access to Psychological Therapies). I had to wait eleven months to start receiving the therapy. I had waited so long I had placed all my hopes on CBT: I figured it must be effective if it had such a long waiting list. Except it didn’t work. The therapist assesses your progress each week based on a quiz of symptoms for anxiety and depression, the higher the score the more ill you are. I went from scoring fourteen out of twenty-eight on the depression test to scoring twenty-eight out of twenty-eight over the course of twelve therapy sessions. My therapy was suddenly cut short, I was expecting to have sixteen sessions. My last session was after the Christmas holidays, I had made serious plans to end my own life in this period of time and I told this to the therapist I was seeing. I was told the provider of therapy would not get funding as a result of my scores going up rather than going down.
So there I was, hysterically crying, during my last session, all my hopes of getting better were gone. I was presented with two options: I could go to a depression support group or I could be referred to more specialised mental health services. I have a social phobia, a support group was not an option. In order to get help from further services I needed to give a clear answer as to what I wanted to get from additional therapy, and even then I was told it was unlikely my referral would be accepted. My life as I knew it was falling apart, I was losing the will to live and as a result there was no way I could pick out a single aspect of my life that I wanted to work on in therapy. So, I was left with nothing and I went into free fall; my feelings of hopelessness and loneliness became too much.
The next day I went to my GP and at that point my only option was to go back on anti-depressants. A common side effect of anti-depressants is that they can make you a lot worse before you get better. For the first week I was bed bound, struggling to eat, struggling to sleep and struggling to talk. For the next two months my suicidal thoughts became so intense that suicide was frequently at the forefront of my mind, suicide felt like an inevitability: I couldn’t access treatment to make me better and the medication made me worse. I told one GP I didn’t trust myself. I asked one GP how I was supposed to make it through the week until I next saw her. I asked another GP to prescribe me with enough pills to kill me. He refused. He called the crisis team.
The crisis team called me later that day, they gave me a list of helplines ran by charities and I kept asking “Is that it?”. The one helpline that was supposed to take appropriate action when someone is at their lowest point just gave me a series of other helplines ran by charities. The next day the crisis team called me back. I was sat alone in my bedroom and again they rattled off a list of helpline numbers. Then I was told over the phone mid-crisis that my doctors suspect I have a condition that cuts almost twenty years off my life expectancy: it was in my doctor's notes that I might have a personality disorder yet up until that point I was never told this. They told me so that I could refer myself to the Personality Disorder Network, through them I could access therapy. That was all the crisis team did, it felt as though they resolved nothing and in fact made my life far more unstable than it already was. I referred myself to the Personality Disorder Network the next day. They lost my referral. I referred myself again. They sent me an illiterate letter a month later telling me to seek help at my university instead, despite me detailing in my referral that I had tried to get help from my university, and they were unable to offer me any mental health support without a formal diagnosis for a personality disorder.
It felt like the NHS didn’t care whether I was dead or alive, and if they did not care then why should I? Subsequently I became very reliant on my friends to keep me safe. During this time my relationships were very strained. When I did talk to some of my close friends most of what spoke about related to plans I was making to end my own life. A housemate had to keep a hold of my medication so that I didn’t overdose on it. Sharp objects I could use to self-harm were taken away from me. This made it incredibly difficult when some of relationships fell apart during this time: if my friends were the only thing keeping me safe what hope did I have if they were gone. Then again, my friends are not medical professionals, they should not have had the responsibility of keeping me safe and I am sure this experience in turn had a negative impact on their mental health.
It was at this time that I needed a diagnosis of a personality disorder to get mental health help at university. A GP I saw told me there was no service where I live offering this diagnosis. I called up a local hospital: they confirmed that they offered personality disorder diagnoses. The next week I went back to my GP and told them this. The GP told me that so few people have their referral accepted to secondary mental health care that there is very little point trying to access it. I did not care, this was my one chance to get help. I told her to refer me regardless. A month later my other GP broke the news to me that my referral was successful: him and I were both ecstatic. He explained how lucky I was to be accepted to secondary services, that it is so rare that anyone gets accepted. That terrified me: I spent four months of my life plagued by intrusive thoughts of killing myself every day and my GP was surprised I was accepted to secondary care. It made me fearful for all the people who have been in a similar situation to me but have been left with absolutely nothing.
As I write this, I have been without therapy for ten months. I have been on a waiting list for therapy through secondary mental health care for six months. If it is so hard to access this service in the first place, why are the waiting lists so long? Other than antidepressants, there is nothing in place whilst you wait. It is not fair that during time I have had rely on my peers in order to survive. I too have had to help support my friends whilst they have waited to receive mental health care: I have found this really challenging, how do you talk someone out of killing themselves when you yourself wants to die? Our education system has taught me many things that I have never used since I have left school. However, it appears as though the system expects us to know how to support others who are mentally ill because how else can you get through months and months of no support? I was never taught how to convince a friend life is worth living. I was never taught what to do if a friend has an overdose.
I am scared of entering crisis again: if I do I know I can not rely on the NHS to keep me safe.
Change is needed. Firstly of course more funding would allow the system to support more people and lower waiting times that all too often leave people with nothing. Secondly the system should not be based on point scoring, and funding should not depend on this points based system. It has taken me a long time to accept that mental health is not a linear concept, everything is relative and no two people experience mental illness the same, reducing my illness down to a point scoring exercise is frankly insulting and does not help me. More forms of specialist care and support are needed whilst people wait months, and in some cases years, to receive treatment. Currently people are left with nothing during this time. There needs to be more support available for people with long term mental illnesses, it was incredibly tough for me to access anything beyond primary care in the NHS despite me being very ill. The system needs to recognise the need to help long term sufferers of mental illness. Entering different services of mental health care should not be a battle, the system should be transparent and not based on jumping through hoops.
Finally an apology is needed. Currently many people are being let down by this system and it is impacting severely on their lives. There is a deep level of mistrust in the system, many of my peers and I know we can not rely on the mental health system to care for us or keep us safe. The Conservative party have had nine years to build a system that helps people but currently the state of mental health care in this country is abysmal. During the past nine years people's lives, including my own, have suffered as a result of the health care system neglecting us. with the general election approaching, many parties including the Conservatives, are proposing increased funding for mental health care. Whilst this funding is much needed what we need is a government that acknowledges the massive overhaul system needs and appreciates the need to rebuild the trust of people who have suffered at the hands of a broken system.
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