Today I’m feeling anxious, I have been feeling increasingly so for the last couple of weeks because tomorrow I have an assessment with a psychologist. I was originally meant to have the assessment in December but wasn’t well enough to attend and moved it to the end of January hoping that I’d have improved by then. Sadly, it got cancelled with 3 days’ notice by the psychologist because she was striking that day. It got postponed again until after I’d finished withdrawing from my medication and hopefully improved. It’s now tomorrow. In some ways I have improved – I cope better when I have to travel in cars, I can go to the shops a little more often and stay out a little bit longer before the panic sets in, occasionally I even go out and don’t feel panicky at all. However, I feel incredibly anxious about tomorrow.
I’ve been fighting for this assessment since September and was originally deemed “unsuitable” but was never told why. I fought and explained why I should be assessed for therapy and stated that as medication clearly doesn’t work, psychological therapy was my only hope other than spontaneous recovery which we can hardly rely on happening. Eventually my psychiatrist gave in, seemingly because he could no longer justify saying no and I was sent an appointment.
They keep refusing to do my assessments by phone even though I’ve already missed one face-to-face appointment because I got so anxious that I couldn’t move and they keep telling me to “just try” and “keep pushing yourself”. I push myself every day. I have almost no support from the health services now and was really unwell for months due to withdrawal from my medication which wasn’t monitored because I still don’t have a new psychiatrist. I’ve now not been seen by a doctor since the 3rd of September and am still yet to be allocated one – it’s been 7 months.
When you’re suspected of being diabetic doctors don’t just make you eat sugar in front of them and then pump you full of insulin when it’s clear that your body isn’t processing it and is rapidly killing itself. Why then must I keep “pushing myself” to go to appointments so that they can see “just how anxious I am”. Why am I essentially being tested? Most of what I say and do currently seems to be skewed by doctors and psychologists who just use it in whatever way they like to back up their own point. I’ve attended 3 appointments so I was well enough to get to those, why not the latest appointment? I explain that I’m so anxious about these appointments that I stop being able to sleep for a week beforehand and my IBS flares up. These appointments are making me more ill but I’m expected to attend them in order to get treatment. I have to go to assessment after assessment with healthcare professionals with different job roles and titles and so far all I’ve been offered is Group CBT sessions. I regularly go weeks at a time without being able to set foot outside my front door so how is it feasible to expect me to do this? Asking me to “just go outside” is like asking someone with a broken leg to walk on it with no plaster cast. They can want it as much as they like but as soon as they try to put weight on it the pain will be unimaginable and their leg will buckle potentially causing more damage. Wanting your bones to fuse together doesn’t mean that it happens and it’s exactly the same with my anxiety. I hope, wish and even pray every day that I will be able to go out and do all of the normal things that I took for granted but that doesn’t make me any more able to do them than walking on a broken leg.
Patients having a lump investigated are told what the possible outcomes and diagnoses may be and in time are told what treatments may be available to them. They are given a diagnosis as quickly as possible and then told about treatments, prognosis and available support. They are not kept in the dark about these things and are allowed to make decisions about what they feel would help them best and how they want to proceed. I’m afforded none of these luxuries as a mental health patient. Over a year in I’m still yet to be diagnosed, I’m still having to go to assessments and have still not received any psychological treatment. I’ve taken myself off the medication that was making me worse because I have no doctor to discuss it with or to advise my withdrawal so I did it alone. I have been in and out of the mental health system since I was 16, I have a psychology degree and until a year ago I worked in a psychiatric inpatient unit. I know my stuff when it comes to what therapies are available and whether or not they’re likely to help me. I’ve had so much CBT that I could almost certainly deliver low-level therapy with no need for further qualifications and while it’s a great therapy, it hasn’t worked for me and there’s no reason to think that would be any different for this anxiety disorder.
In 2011 I received Cognitive Analytic Therapy which really helped me at the time and is the therapy that I believe in most to be able to treat my current difficulties. I have been asking my psychiatrist since September to refer me for CAT and have been categorically told that it IS offered by my local NHS Trust and within my area so I fought for it for 5 months. I’ve asked more than one health professional on numerous occasions whether it’s offered here and whether the therapy assessments I’m going to are assessing me for CAT or just CBT and have always been told that they are. That was until January when I phoned the day hospital and the person I spoke to immediately said that the Trust DO NOT offer CAT. I was shocked at this and nearly burst into tears. I told her that both my psychiatrist and psychologist had assured me that it was and that I was being assessed for it so she said she’d check. The psychologist then called and finally admitted that CAT is offered by the Trust but that there are no NHS funded therapists in our area and due to my condition preventing me from travelling, I would not be being assessed for it.
I’m now in a very difficult position where I’ve been lied to by the very people that I’m meant to trust. I have to open up to these people about my deepest darkest fears and tell them about all aspects of my personal life. I’m meant to trust in them to tell me the truth and to work for my best interests and to advocate for me when discussing my treatment in meetings. But they’ve lied. They’ve lied over and over again, when I’ve asked them direct questions about whether or not I’m being assessed for this therapy. It feels like I’m being conned. How am I meant to persuade myself to go to an assessment that I’m terrified of attending when it looks increasingly likely that I’m just going to be offered Group CBT or sent back to my GP. I keep asking what provisions there are for people who are housebound and I’m still yet to get an answer. I have explicitly stated that I do not want to be discharged back to my GP, the same GP who put me on medication that I should never have been given in the first place due to previous bad reactions to it and who told me to “just stick with it” and more worryingly to “try harder” and “think more positively” while I deteriorated thanks to the horrendous side effects. If I can’t attend tomorrow though I may well be discharged back to their “care” meaning I won’t get any treatment.
I know that I’m one of the unlucky ones for whom medication is not the answer, or even part of the answer. I know that I’m a nightmare patient because my conditions are treatment-resistant and complex but I wish they’d been straight with me and not lied. If CAT isn’t offered in my area and I’m not well enough to travel out of area for it then that’s fine. I don’t like it but it’s not unreasonable and I understand that particularly in this economic climate there are limitations on healthcare provision. I’ve directly asked over and over again and been assured that I was being assessed for it. I’m left wondering what would have happened if I’d been well enough to attend the original assessment? Would I have been told I was “unsuitable” for CAT despite being suitable for it when I was assessed in 2011 by a different NHS Trust? Would they have just tried to palm me off with Group CBT and then said that I was “refusing treatment” when I declined due to not being well enough to attend? Would they have ‘fessed up and said that actually they’d got me there under false pretences and that CAT isn’t offered? I’ll never know.
I am not alone in being treated in a sneaky, underhanded way. Countless patients with mental health problems are treated like this every day. It simply wouldn’t be allowed if I had a physical condition. I wouldn’t get put on medication without a diagnosis. I wouldn’t have to prove myself, my tests results would speak for themselves. You may be thinking that you can’t test for mental illness and biologically that’s currently true. I can’t have a blood test and be diagnosed with an anxiety disorder but there are countless psychometric tests that measure anxiety levels, depression scores and every other psychological condition under the sun and my score on the anxiety tests is through the roof. There is no mistaking or denying that I’m severely affected and that my quality of life is hugely diminished by this condition and the test results show that. And yet, I’m still expected to prove it by attending the appointments and for some reason, unknown to me, not being able to attend an appointment because I’m so anxious that I’m not able to move, doesn’t prove that I’m even more ill than they thought and therefore in need of urgent treatment. No, my inability to attend appointments just seems to elicit threats of being discharged back to my GP and receiving comments about not trying hard enough or putting in enough effort. This would be a disgrace if I were physically ill but it’s widely accepted when mentally ill – You Should be Outraged!
N.B I’ll post soon about whether I manage to attend tomorrow and what the outcome is.
In The Midst Of Madness 