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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.
Paul
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.
9 Comments
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That was a hard experience Paul but throughout it your willingness to negotiate and compromise and face up to your problems shows through very clearly. Your ability to co-operate with professionals when they weren't co-operating with you is admirable and I know I can't do that.
I picked up on the changing of psychiatrists and different staff being involved. This means having to explain your story again and can be very disorientating but it happens a lot. At my local unit typically the first appointment with a psychiatrist will be with a specialist registrar for an 'in-depth' case history taking of c45 mins - how someone's life can be condensed to this time is just silly. Mainly it will consist of a few key events like number of siblings and their ages, date of marriage and kids etc. The registrar will prescribe some medication and the next appointment will probably be in 3 months and at same intervals thereafter. However the next appointment will often be with a different specialist registrar and will be a medication review. Many of the registrars are new to the country and not familiar with the idiom of everyday spoken English and they don't always pick up on the nuances of a different culture.
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It seems to me quite evil that people people in crisis have to turn to a system that has as much potential to do them more harm as any good. The choice seems to be, I need help but all that is on offer is pot luck. So you have to go along with these odds hoping that you might get a semblance of the care you need. Its a despicable way to run a health service. I wonder what ever happened to the idea of self help crisis care from those who know and have experienced their own problems. And anyway, the best care (and often therapy) comes from those individuals closest to you. The last thing the mental health industry wants is real and meaningful input into how it operates from those who are recipients of it's concequences. Paul, your experience along with many, many others testifies to this.
Paul I wish you well in your continued recovery. -
Imagine this level of disrespect and incompetency in physical healthcare...
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The crisis care I received was also terrible. They failed to notice that I was being abused by my partner, a different person visited each time but often they did not turn up, they suddenly gave me a new diagnosis and when I asked what it meant, they just said google it. When I googled it, I only found stigma and insulting descriptions from non-professionals, causing even more depression.
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I totally agree with the fact people can end up worse off in the long run after being treated with psychoactive drugs. There are no systems in place to help people discontinue their drug and I have found that there is absolutely NO help when people start suffering debilitating withdrawal symptoms (something the medical profession don't warn you about, or even acknowledge as problematic). I was encouraged to stop Prozac c/t and when after several months withdrawal symptoms started to kick in, (unimaginable and unbearable psychological and physical symptoms) I was treated in my opinion worse than a criminal. I felt I had no rights and that anything I said I was experiencing was questioned and overruled. All the while the professionals tried to convince me that I needed medication, oblivious to the fact that I was suffering horrendous withdrawal symptoms. I was left to suffer for months on end with torturous symptoms. I finally had confirmation after 2 years that it was indeed withdrawal symptoms, but that there wasn't anything they could do to help alleviate the problems I was still suffering other than giving out more psychotropics. I am still suffering a protracted withdrawal state, which the psych's like to call neurological symptoms. So, just over 2 and a half years off prozac and I still have diminished senses; taste, smell, touch, hearing. Still have no emotions whatsoever, still have memory and concentration problems. PSSD. Wished I'd never sought help in the first place, nothing could have prepared me for the hell I would eventually endure.
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This mirrors my own crisis this year. A huge, huge part of my getting through this came from my own determination and self care. Alas a 8 month relapse produced 3 appointments of 30 minutes with a psychiatrist and a 4 month wait for support care which never actually happened as they cancelled as could not offer me a place due to no finance being available. So 8 month near crisis = 1 hour 30 minutes help. I'm with mindreader imagine the uproar if this was the service for a physical condition. The NHS should be reported to trading standards for its emphasis on equal services for all!
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'I wonder what ever happened to the idea of self help crisis care from those who know and have experienced their own problems.'
Good question Concerned citizen - it was very popular at one time now it's almost laughed at as a kind of 70s encounter group joke. I do however have personal experience of, and much gratitude for, a self help group for incest and abuse survivors that was set up by a woman who'd been abused and found the statutory services wholly inadequate.
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Re: Self Help Crisis Care this is done in many countries such as US and Australia/New Zealand. It works, is cost effective and allows those who have been through it to help others get through it.
I think that NHS trusts actually fear this as percieve it as a threat to there medical model of treatment. -
I consider that I have been extremely lucky in a lot of care I have; from my family and professionals, especially since things 'calmed' down. However, near the beginning I saw five different psychatrists; each one treated me just as another person to make notes about but finally I now have a regular one with a very human face. Again, during moments of crisis I could have easily been 'locked away' but my wife refused to allow it insisting I was better off at home. Sadly, there I encountered almost the exact problems with the Crisis Team as described above. It is not neccesarily the people who are wrong but the system; most were kind, but many out of their depth; one I recall was condescending with limitless advice; it was hardly ever the same person each time but all had the interminable questions until I realised after the fourth crisis that they caused me more stress than being alone; I had to wait for their arrival; some stank of cigarettes, they'd rush in and rush out when really I knew that all they wanted to see was that I was still alive.
Here, I have hardly scrapped the surface of what happened but something needs to be done; we are humans and individuals in very really turmoil; not just numbers with the system
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