The text below was written by Jai; I feel privileged to have read it, and privileged that she has allowed me to share it on my blog. Please do read this; it’s an important, intelligent and thought-provoking piece.
NHS Warrior: not just a survivor
So what made me want to share my experience? The honest answer is that I’m not entirely sure; all I know is that I need to share. My heart breaks for our under-resourced NHS, for the lack of understanding of appropriate response to the emergency of trauma (in my experience at least), and for the injustice of the further unimaginable suffering caused by this. My intention isn’t to attack the NHS; equally, something drastically needs to change in how we respond to mental health needs of trauma survivors.
I question why my GP didn’t pick up that something was wrong when I first presented at the surgery with insomnia and anxiety as a child (many years later, I would recover memories of childhood abuse), or why no support was offered when my sibling took their life during my teens? The eventual breakdown during my second year at university was another missed opportunity. I had to see the university counsellor to explain the situation in order to be able to come back the following year; on reflection, I’m surprised that he didn’t recommend some sort of continued support on my return.
During my early 20s, I pushed for counselling (against the wishes of family). I knew that something was very wrong but didn’t have the knowledge or tools to begin addressing it. I was given some limited sessions of CBT (cognitive behavioural therapy) with a wonderful practitioner. These sessions enabled me to start challenging some deeply held beliefs and conditioning, and set me on a journey of personal development. I was able to begin to face some of the pain of losing a sibling in such a violent manner. Unfortunately, these sessions were not sufficient to deal with the impact that multiple traumas were having on my nervous system, and the physiology of my brain.
I’m saddened, recounting my experience of mustering up the courage to seek help as a late 20s adult who had recovered memories of childhood sexual abuse. At this point, I had become friends with the CBT practitioner. She advised me to tell myself that the story of abuse was not going to impact me, and that if I wanted, I could have 5 counselling sessions with her; however, this would mean that we could no longer meet as friends. She also advised me against seeking help via the local Mental Health Trust, and told me that it wasn’t a place for me.
As much as I wanted to follow the practitioner’s advice, my symptoms were so severe that it became clear to me that a cognitive approach would not be sufficient to manage them. I approached my GP; her response was: ‘Are you sure you’re not imagining it?’ I had shared my opinions on her inappropriate response and requested a professional referral for help. I found myself walking out 10 minutes into the clinical psychiatric assessment that followed, in a further traumatised state. I didn’t return to my GP, nor did I receive any follow-up on having walked out of the assessment. I tried to find other means to help me deal with the flash backs, anxiety, insomnia, nightmares and all that went with it.
A few years later, I experienced my second dose of PTSD. A sudden bereavement caused me to spiral into despair. I couldn’t distinguish between this death and my sibling’s death. I was having flashbacks, extreme sensitivity to light and sound, and was having persistent thoughts that my friends and family were going to start dropping dead around me. I was walking around in a terrified state, frozen in a state of emergency.
My adult self knew that this wasn’t logical and that death is a natural process, but my mind and body was hijacked. A fear of being sectioned prevented me from sharing these details with a new GP (at the same surgery). I did eventually seek help from the GP (in a visibly distressed state). She assumed that I was having a tough time dealing with the latest bereavement and prescribed medication. I weaned off the medication a few months later but received no form of counselling/therapy/further support. The quick fix medication and failure to investigate my history is probably a reflection of the GP’s time constraints more than anything else.
I hear people say that things were different ‘back then’, and it’s all changing now. There is much progress in changing the conversation and stigma around mental health; the ‘Heads Together’ campaign, spearheaded by the young royals is a testament to this. But what happens once a person recognises that they need help, overcomes their fears, and reaches out? It seems that the war isn’t won yet; that’s just the first battle.
I am devastated and shocked beyond belief when I recount my experience of the last 9 months since my trip to A&E. I feel I must share it in some detail but worry that I may not be able to communicate the full extent of the horror of the experience or the strength of my concern for people in a similar situation to mine.
9 months ago, I woke shaking and jerking violently, and was taken into hospital. I didn’t understand why the doctor was asking me if I was experiencing trauma. Nothing made sense. All I knew was that I had been having intense chiropractic treatment following a car accident I had in 2015. In 2016 I started experiencing vertigo, memory problems, and issues with balance and my ability to judge depth of stairs when I walked. I also experienced additional neurological symptoms such as a heavy left eye and the sensation of cool running water down the left side of my head. As far as I was concerned, the shaking and jerking was connected to the treatment. I had already been waiting 3 months for a neurology referral at this point.
When the A&E doctor asked me if I had ever experienced trauma, I shared that I had, and he asked a psychiatric doctor to meet with me. Once the psychiatrist had ascertained that he was confident I wasn’t suicidal, he endorsed my pending neurology referral, gave me a muscle relaxant and advised me to meet with my GP the following day. I was discharged with a ‘single point of access’ number scribbled on a leaflet and advised that if I needed to contact mental health services, I could call that number and someone would visit me at home within 48 hours. I left the hospital in a confused and frightened state, still shaking and jerking uncontrollably.
The following day, my GP (at a new surgery) was as confused as I was. I was prescribed more muscle relaxants and told that he would chase up the pending neurology referral and make an urgent request. I was once again asked whether I had ever experienced trauma, and I shared that I had experienced abuse as a child.
I contacted the single point of access number that the hospital psychiatrist had given me and was advised that I didn’t fall into their ‘area’ but that they would pass on my details and it could take quite a while. I decided to contact my GP and request a referral to increase my chances of being seen sooner rather than later.
Numerous GP visits and telephone calls ensued, chasing the neurology and psychiatric referral.
The weeks and months that followed were torturous. I wasn’t able to work, still shaking and jerking uncontrollably, experiencing a burning sensation in the back of my head, my cognitive functions were severely compromised, I had developed additional symptoms similar to tourettes, and my mental health was terrifying. I found myself pacing in the local park, crying and telling myself that ‘I choose to live’. I had no idea what was happening to me.
I had my first appointment with the neurologist a further 3 months after my A&E visit. An MRI and EGG test later, the neurologist confirmed what he suspected on my first visit to him: that it was more than likely that I was having a trauma response. For the second time, he recommended an urgent psychiatric referral. It had now been 6 months since my visit to A&E.
In parallel, I had been chasing the psychiatric referral with the GP surgery and was receiving mixed messages: yes a referral had been made and chased; no a referral hadn’t been previously made but it was made now (4 months later); the referral had been made but the hold-up was on ‘the other side’ etc. I decided to take matters into my own hand and obtained details of the Trust the referral had supposedly been made to and contacted them directly. Again, I received mixed messages: yes a referral was received months ago, I apologise profusely and will get someone to contact you; no we haven’t received a referral.
By now, I was running on empty; the stress of chasing referrals exasperated my symptoms. The GP’s comment that ‘a referral won’t be magic; you need to try too’, left me dumbfounded and confirmed to me that my GP had no understanding of the challenges I was facing.
In total disbelief, I contacted the commissioner for my borough’s Clinical Commissioning Group (CCG). The conclusion of this avenue of investigation was that the Trust confirmed that they had not received the referral but that any referral would be declined on the grounds that my GP’s and my own postcode were not in the same borough as the Trust. He advised me to contact my GP to find out who the CCG was for the surgery, and that they would support me. It had now been 8 months since my trip to A&E. My postcode was in fact in the same borough as the Trust, so I wasn’t very impressed.
But wait, it gets better. I made a visit to my GP and sat down with the secretary to try to get to the bottom of the mess. She called the Trust in my presence and they confirmed that they hadn’t received the referral as they don’t take referrals by fax; instead, she should submit a ‘single point of access’ form. This then begs the question: how was this not discovered when they previously chased the referral?
I sat with the secretary and completed the said form. I also discovered that the referral that had been ‘faxed’ to the Trust was factually incorrect and didn’t communicate the urgency of my situation. It read that I was having a ‘shaky feeling in my body’ and that I had a childhood trauma that I wanted to speak to someone about. My body was in fact shaking and jerking uncontrollably, I was experiencing severe anxiety and despair, and I had requested help to figure out what was happening to me – I hadn’t actually asked to speak to someone about childhood trauma. I couldn’t believe that I was sat there amending my own referral text, requesting urgent help.
I had recovered enough of my cognitive function to be able to do this; despite the anxiety I was experiencing while amending the text. What happens to people who aren’t able to do this? My experience of advocacy services was that I ‘didn’t fit the criteria’. It seems that the service didn’t understand the complexities of PTSD and how it might limit a person’s ability to advocate.
9 months after my visit to A&E I now have an appointment with the Trust. I have no idea whether they will be able to help me. It has been 9 months of hell. I have heard many tragic stories of people taking their lives while waiting for help. It seems that timely mental health support is mostly available for people who can afford private care. I worry that we as a nation are failing people that have already been let down, and the injustice of it is suffocating.
It would be remiss of me not to mention the anti depressants that I was offered whilst waiting for my referrals to come through. On reporting the intolerable side-effects I was experiencing from taking the prescribed medication, the GP asked me, ‘what do you want me to do?’ To which I responded, ‘I don’t know? Maybe I should try another one?’ His response was ‘which one? – quickly’ I hope anyone reading this can feel my pain. I don’t doubt that the GP is a good guy doing his best with the pressures he faces, but his understanding of, and approach to mental health needs falls way short of adequate. (In case you are wondering, I did make enquiries about changing GPs but postcode issues would mean starting the referral process all over again).
There is a desperate need to resource our front line carers to be better trauma informed, so that we can have appropriate interventions and early interventions that are appropriate. Maybe then, instead of constantly fire fighting, we might have a chance at taking some of the pressure off our already overburdened Mental Health Services. Who knows? Maybe our Physical Health services might benefit too? I hear the two are linked. What about the economy? I know that I desperately want to be able to work again.
As someone who has battled hard to overcome many challenges over the years, and holds the desire to contribute positively to society – I don’t want to give up. I don’t want to become another tragic statistic, and I don’t want to vanish away under the weight of the scary symptoms and isolation that accompanies them.
I will always be grateful to: The Samaritans; Rethink Mental Illness; and Survivors of Bereavement by Suicide, for their professionalism and compassion whenever I called them in despair. Another national mental health charity was not so helpful (in my experience), but maybe that’s a story for another day …..
A thank you to my friends – you have kept me alive.