24 Hours in Hell: Update

Two Years Later…

It’s almost two years to the day since I suffered this terrible and traumatising experience at the hands of Camden and Islington NHS trust (CANDI), and I thought it was time to provide an update on what’s happened since then.

It took me quite some time to get over my unlawful detention, in fact I still haven’t recovered. I no longer trust authorities, and I certainly don’t trust the medical staff at CANDI, which is a shame as they’re the only ones who are available to treat me. Instead, I pay to see a private counsellor. The cost of one fifty-minute weekly appointment is more than one week’s Employment and Support Allowance, but I have to do what I can to stay alive.

After the unlawful detention, I requested my medical notes. They took over six months to arrive, by which time I was starting to feel better mentally, and just wanted to put the awful trauma behind me. Then I got ill again. Eventually, after a whole host of other terrible treatment by CANDI, I decided I’d had enough and complained about being locked up against my will as well as a number of other issues.

My complaint was upheld. They didn’t have much choice, really, since their own Mental Health Law officers had told them that they were acting unlawfully. I didn’t receive an apology, unless you count a generic one-liner that tags off the end of all their complaint responses. No indication that they understood the severity of what they’d done, or the impact such an experience might have on someone who is already suicidal and vulnerable.

I submitted a complaint to the GMC about the doctor who’d unlawfully detained me, Sophie Gascoigne-Cohen. They didn’t pursue the complaint as they didn’t deem her to be a risk to patients (mental scars being conveniently less visible than physical ones) although they did say that the matter would be reported to her supervisor. The matter of her refusing to give me information to allow me to give my informed consent to stay on the ward, and refusing to record that I was staying under duress, they classed as ‘administrative issues’ – a cynical misunderstanding of facts if ever there was one.

Did I feel a twinge of guilt, reporting a young psychiatrist and potentially damaging her career? No. I felt an overwhelming sense of responsibility to protect other vulnerable patients from a doctor who sat there and refused to let me assert my legal right to leave the ward, despite me asking. And asking. And asking. Who wilfully role roughshod over mental health law and the safeguards put in place to prevent unlawful deprivation of liberty. I felt worried that a young woman, not long out of medical school, could feel the need to assert her authority to the extent that she cynically deprived me of my human rights. If she showed no compunction in doing this to me when I was quite calm and coherent then lord knows what she might be capable of doing to someone who lacked capacity. There are many, many ways mental patients can be abused by authoritarian doctors, and although pursuing this complaint has been stressful and upsetting, the treatment I’ve received at the hands of Camden and Islington shows that we need to continue holding NHS staff to account to prevent the abuse of vulnerable people.

Finally, I spoke to a solicitor. What happened to me was undoubtedly a legal breach, but sadly there’s little or no money in such a claim, and so they weren’t willing to represent me unless I paid for myself. Since the amount of any compensation would be small, I would be putting myself through terrible stress and expense to pursue this any further.

The only thing I have left, really, is to record my account here in the hope that others who have suffered in a similar way might not feel so alone.

Stay strong and keep fighting.

 

 

 

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A Literary Life

I’ve been mentally troubled for a long time and began self harming when I was 13.

My parents referred me to the Children’s mental health service in Sheffield, but despite the psychiatrist telling me I should be admitted to their adolescent unit nothing ever happened. I’m not sure if the referral got lost or my parents quashed it.

I was started on antidepressants at 15 and have been on and off them since. But this blog isn’t about medication, or psychiatry. It’s a journey of my mental illness through the books I’ve been recommended over the years.

My periods of depression  became really noticeable when I began work in about 1995, and after revealing my concerns my GP recommended Overcoming Low Self Esteem, by Melanie Fennell. IMG_6760

It had some useful information but didn’t help with my depression.

A couple of years later I returned to my GP for help. By this time (around 1998) the mania for CBT was sweeping the nation, and I was prescribed six sessions and this workbook:

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In fact, one of my psychologists was so evangelical about CBT that after one hospitalisation she bluntly told me that if I was still ill ‘it was because I wasn’t doing it right’. Not that I had untreated bipolar or anything.

Whatever, the black dog continued to follow me. After a complete breakdown whilst at uni in 2005, I finally received my diagnosis of bipolar, and was given this to read – I would highly recommend, incidentally, both for sufferers and friends and family.

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My (private) psychiatrist was the first person to really treat me as an intelligent equal in our dealings, and as a result he suggested I buy this weighty tome:

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It was pretty pricey as I recall, the flyleaf says $65, but I got a lot out of it. Although it’s written for clinicians, each case study has a ‘takeaway’ summary at the end so you can get the gist. Invaluable for finding different treatment combinations – and if you’re paying a private doctor I would rather be doing the reading on my time than his.

On the subject of bipolar I should also mention this autobiography by Kay Redfield Jamison, who is a clinical psychologist who herself suffers from bipolar. It was one of the first books I read that made me identify with her symptoms and wonder if that was me, too.

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After a few years respite, in 2012 I deteriorated following the death of my mum and the strain of being the sole carer for my grandma. I tried (repeatedly) to commit suicide, and whilst in hospital was seen on a psychiatric ward by a locum doctor. I had never seen her before or since. However, she immediately rubbished my bipolar diagnosis and said I quite obviously had Borderline Personality Disorder. Whilst in a recovery house post-hospital, I read this book, which again I’d recommend:

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It was hard to shift my mindset from believing for such a long time that my mood state was caused by neurological imbalances, to believing that my illness was a series of maladaptive behaviours brought about by childhood trauma.

I didn’t dismiss the diagnosis – I recognised lots of patterns from the book that had played out in my own relationships. My issue with BPD was then, and has always been, a tendency to pathologise normal behaviours. If someone has a stressful day and comes home and has a glass of wine this is normal, but if a BPD sufferer does the same they are ’employing a maladaptive coping strategy’ to deal with their feelings, and should actually go and sit in a field meditating instead. Humph.

There being no NHS treatment for BPD in Sheffield, the hospital recommended this workbook and thusly discharged me, duty of care completely fulfilled:

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It’s not a bad book and I did learn a lot about using ‘healthier’ coping strategies.

When I came to London in 2014 the debate raged on as to if I had bipolar or BPD. I was ‘streamed’ into the BPD service as I was told I couldn’t be treated for both, it was one or the other. I was told that the Personality Disorder service would offer more in the way of therapy whereas the Bipolar team mainly focused on medication. From experience I know that the NHS relies heavily on older, cheaper bipolar meds such as lithium and antipsychotics, which can severely limit normal functioning and have severe side effects. My psychiatrist told me this week that 45% of the bipolar population have type 2 diabetes (compared with around 9% in the general populace).

So, once I was under the Personality Disorders Unit I endured a year’s wait for my therapy – originally planned to be Dialectical Behavioural Therapy as in the workbook above, but eventually, in about 2015, decided to be Schema Focused Therapy. Here’s my reading list for this one:

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Look at that title. Victim blamey somewhat? So, you’ve gone through trauma but CHEER UP you negative Nelly else it’s your own fault you’re still poorly.

My schema therapist was lovely, and I tried hard. I understood that the one of the principles of psychotherapy is that you have to get worse before you get better, but I got worse. And worse. And worse. After about eight months I was a mess, and we decided to call it a day.

I was referred back to the list for Dialectical Behavioural Therapy.

It’s hard to explain what went wrong here except for the fact that my therapist had the empathy of a block of wood. She was impossible to establish any rapport with, and as a result I found it incredibly hard to open up. When I tried to raise this with her I was told that it was her or no-one, and when I complained to her manager, I got nowhere. The following month, I learned they had both left the service to set up together in private practice.

There followed a year without treatment. With rapid cycling of moods, extreme anxiety, agoraphobia (I booked a trip to Edinburgh to the festival and locked myself in my rented flat, never seeing one show), the only thing that kept me going was my substance misuse worker. I’d originally been referred for help with drinking as I was drinking heavily to cope with my moods and this often precipitated a suicide attempt. After about four months of seeing my worker, she said i no longer had a problem, but we carried on seeing each other because she knew I was getting no therapeutic support.

All the good ones leave, and in June 2017 she sadly she went off to work for another trust. My condition deteriorated rapidly. I was self harming, never leaving the house, not even washing, and having flights of mania within all this. I was (and remain) like a butterfly trapped in a lighbulb.

I took the only remaining option and went to see a private psychiatrist. Within less than two minutes of seeing me (and assessing the questionnaires I’d completed in advance) he diagnosed me with mixed affective state bipolar. I was back where I’d begun.

Mixed affective state bipolar is not the same as bipolar one or two, so I was given further reading to try and understand my condition. Today’s book:

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To be frank, whereas I eagerly attacked most of the other books, desperate to understand the hell I was going through, with this one I just feel tired. I feel like I could see 10,000 different psychiatrists and get 10,000 different answers – each one swearing that their predecessor had it utterly wrong.

But for now, it’s what I have.