Feeling out of control in crisis care
Posted Monday 26 November 2012
I was making the preparations for my fourth attempt at withdrawal from a really damaging psychiatric drug I’d been taking for over 14 years. This time I was determined to succeed. The previous three attempts had been horrendous and genuinely life-threatening, I didn’t want a repeat of them.
I decided an advance directive would really help me. It would make absolutely clear how I wanted to be treated if I entered crisis again. I met with the relevant person at our local mental health trust, engaged my psychiatrist (who was reluctant to get involved and was always ‘too busy’) and shared the directive with my close friends and family. After this I felt moderately reassured that things would be in hand.
Disaster started to creep up on me very insidiously. At first, the physical sickness started as I was coming lower down on the original dosage. I’d vomit without warning, become horribly dizzy and was always incredibly tired but struggled with sleeping. Then, some 18 months into the withdrawal plan, I really started to fall. The physical sickness was ramping up but I was falling apart psychologically too.
I was just about to leave for a trip abroad when fear struck me like a bolt of lightening; I forced myself to go. On our last day, I made my partner take me to the airport 10 hours in advance of our flight as I couldn’t cope with being in the city where we were staying any longer.
As soon as I got home, I called my psychiatrist. He saw me a week later. I confessed to him that I couldn’t cope and was fearful of living. The moment I said this, my freedom and choice went out of the window. He told me he was tired of my efforts to withdraw from psychiatric medication and he wanted me to spend a period of time in the new PICU (psychiatric intensive care unit) so I could come off the drug overnight and be observed for several months in the unit.
I refused and immediately felt completely reduced. No reference was made to the wishes I had outlined in my advance directive. I asked him if I could have respite, although not in an in-patient unit, and he bluntly refused and told me that the NHS didn’t have money to fund this level of support. We finished our meeting and he told me that since I was refusing to be admitted to hospital, he would send the crisis team round the next day.
The local crisis team turned up the next day. I asked my mum, dad and partner to be present. A woman and a man turned up. At first, I thought she was kind and understanding and she promised to sort out lots of things for me and action my support needs. I was so relieved. My family and I were so distressed. We all cried when we spoke to the two members of the crisis team. I felt like I was letting everyone down. My family reassured me that I wasn’t.
Yet in the end, none of the promises they made were fulfilled. The same nurse visited me two days later, told me bluntly that she was ‘in a rush and desperate to have lunch’ and matter-of-factly announced that I was going to be changing psychiatrist as I was now a patient of the crisis team. I was shocked. Although I had found my own psychiatrist of 6 years to be kind but pretty ineffective, I was used to him. I felt immediately destabilised and told her so, to which she responded that that was how things were in the system.
A variety of other team members then came to see me during the following fortnight. None of them genuinely knew about my situation. Most of them asked for a ‘summary’ of my story each time they arrived. They always seemed to be in a hurry. I often felt very patronised by one or two members of the team who told me that I just needed to accept medication and stop wasting everyone’s time. One even had the audacity to tell me that I ‘knew too much’ and should stop being so obsessed with trying to find solutions to what I was going through. I really did despair.
Out of all that, there was one wonderful psychiatrist attached to the crisis team who I discussed my problems with. I told him the crisis team had been absolutely useless and made me feel even worse. He agreed with me and said the system wasn’t the best. He totally related to my struggles with medication. Indeed, he had done research into psychiatric drug withdrawal and totally empathised. He managed to give me hope when my period of acute crisis left me feeling alone, diminished and without any prospect of recovery. He was wonderful, but he was one of few.
I did recover, in spite of the system, but others may not and that’s why I’m supporting Mind’s campaign for better crisis care services.
You told us you couldn't always get help when you desperately needed it. That’s not acceptable. That's way we're campaigning for excellent crisis care for everyone.
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