Dear Minister
I am 27 years old and have been trying desperately to access mental health services on the NHS since the age of 14, at which point I was diagnosed with major clinical depression. I see no point in detailing the finer points of my case, but please do be prepared for this to be a lengthy query nevertheless, as there is much that the government needs to hear on mental health issues - both in terms of benefit reform, and regarding the catalogue of errors and mental health care deficiencies endemic in the NHS.
NHS Faults
Suffice to say, in my background in the NHS, all my attempts to get the help that I desperately needed failed; either I was receiving treatment, and the clinician left for another job (without an alternative being offered to me), or I was assessed and then even at times disdainfully dismissed back to my GP, or whatever.
I have a string of GCSEs, three A Levels, a degree and a post-graduate diploma and have worked since the age of 16 (part-time during terms, full-time during holidays). There were times when study/work was difficult and, indeed, impossible due to my mental health difficulties, and indeed I could unfortunately not complete my Masters degree owing to this (resulting in a Diploma). I am not arrogant, and hope that is not how I come across in making this point, but I am trying to highlight the fact that (a) one does not educate and work in this fashion if one wishes to end up a benefit claimaint and (
for a long time I was strong enough to co-exist with my mental health difficulties - but in so doing, I set myself up for a very serious fall.
In mid-2008, I had a massive breakdown from which I have not yet recovered. After another string of pillar-to-posting bureaucracy from my local NHS Trust, I was *finally* allocated psychodynamic therapy with a psychologist who appeared competent and with whom I enjoyed a good working relationship. During this time I also finally saw a psychiatrist, and was duly diagnosedwith complex post-traumatic stress disorder and borderline personality disorder with psychotic and dissociative features (on top of the earlier clinical depression diagnosis). Progress was being made in therapy; however, the treatment was prematurely halted, in contravention of the health service and NICE's own guidelines on the matter (as well as the Northern Ireland strategies on same), on grounds that have yet to be fully explained to me. I had been making slow but steady progress, but unfortunately when dismissed from therapy, I was left in a worst position than before owing to the severe levels of re-traumatisation that occurred. I accept that this is a necessary part of the process in some cases, including my own; however, re-traumatising someone to this level and then knowingly and deliberately neglecting to address and resolve the inherent difficulties is not just negligent; it is barbaric.
Such appalling 'service' is utterly unacceptable and is extremely unlikely to take place in the realm of physical health. Furthermore, the psychologist/Trust went ahead with my discharge despite my consultant psychiatrist's advice and requests that the therapy continue. I attempted to fight the decision, even getting my MP and other political representatives to assist me; as a result of this complaint, which has taken a year to get to this point, I am (with my patient advocate and a close friend) about to meet the Assistant Director of the Trust, as well as their Head of Psychology. I have no idea if this will secure me the further therapy that I clearly need, but I felt it was important to fight for it regardless, even though the 'battle' (as it has felt like) did, regrettably, see my health deteriorate even further again.
My Illnesses and How They Affect Me
My symptoms include dissociation - such as fugues/'waking up' and derealisation; frequent hallucinations - usually, but not always, hearing (malicious/persecutory) voices, that attempt to compel me to harm myself (and, more worryingly, at times others); occasional delusions (including persecutory ones); speech (and occasionally thought) disorder that usually makes communication with those I don't know very well impossible; extreme anxiety and agoraphobia that makes leaving the house without a close friend or relative impossible (and extremely difficult even then); self-harm; severe, chronic depression that makes getting out of bed a challenge of epic proportions; suicidal ideation and occasional attempts to act upon that; inability to conduct 'normal', everyday tasks such as cooking and attending to my personal hygiene; a dearth of self-confidence and self-worth; inability to concentrate and focus; inability to use the phone; inability to act with strangers; the existence of an 'alter' personality, over whose presence I have no control; and many more. I also suffer from severe IBS which is, as you may know, exacerbated by such stresses as seen in mental illness. Furthermore, the medication that I necessarily take to control my psychotic symptoms has profound effects in terms of next day 'hangovers'; both it and my anti-depressant medication also have embarrassing and occasionally debilitating physical effects.
My points (finally!) are these.
1. Do you believe that, given the above information, I am capable of
any form of employment whilst my symptoms remain, especially given that the very vast majority of jobs involve interaction with others as well as, inevitably, a good concentration span?
2. Would you agree with me when I say that if the NHS had provided adequate treatment months or years before now, and/or if they had offered the length of therapy that they should have done during my recent encounter with them, that it is possible that I may have recovered enough to (return to) work? If you consider this a possibility, can you explain why - if I lose my benefit income thanks to your reforms -
I will pay the price for the health service's failure to provide the care for which it purports to exist?
3. Do you think that I would have previously worked for so long, studied hard for five long years as a university student and incurred thousands of pounds in student debts if I had ever had wished to do anything other than work for a living?
4. Do you think that, given the above material, I and thousands of others in similar positions deserve to lose my/our benefits? Are you aware that this will almost certainly cause indescribable despair, homelessness and even
death amongst this country's mentally ill?
5. If you
really feel that the testimony of GPs, consultants and a person's other immediate healthcare professionals are unworthy of your trust in terms of assessing a claimaint's authenticity and severity of illness/disability, will you undertake to guarantee that specialists assessors are employed in those cases that you decide to send to a medical? In this arena specifically, I am suggesting that only qualified psychiatrists (or, possibly, clinical psychologists under the guidance of a senior psychiatrist) be able to assess mental health claimaints (the same point applies to other health conditions, of course). I, and many, many others, have been through numerous hoop-jumping, apparently tick-boxing assessments - themselves so stressful they can land a person in hospital - where the assessing practitioner simply does not at all appreciate the very real difficulties living with mental illnesses incur. I was even at one assessment where the doctor had not even
heard of some of my diagnostic conditions. Can you explain how such a person is qualified to make a judgement on a diagnosis, when they are unaware of the very basics of what that even entails?
This Post Versus The Everyday
I appreciate that I may seem rational and collected in this extremely long comment to you - perhaps, you may argue, the anti-thesis of the way I described myself above. There are numerous reasons for this - one, I have composed this message over many, many hours - concentrating on it is otherwise impossible; two, I am at home with my mother, my registered carer, one of the very few people I trust implicitly; three, my voices have been quiet today (although I have experienced other, less threatening, hallucinations) - the biggest difficulty with both my psychotic and dissociative symptoms is that there is no pattern to their severity nor their taking hold of me; four, and perhaps this is the crucial bit, I have had
help. The points expressed herein are mine, but my mother and a close friend have assisted with the minutiae. There are other reasons too, but managing to eventually put this together does not in
any way negate the seriousness of my illnesses and the profound effects that they have on my daily existence.
I appreciate that this has been a very long and protracted 'question' and for that I apologise. However, I felt it imperative to outline in as much detail as I could the unfortunate situation I've been driven to thanks to the NHS, and the seriousness of the symptoms that
presently - but, with the right help, I hope not always - keep me from working.
Thank you very much indeed for your time and consideration, and I look forward to your response.
Best wishes
Kaz
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