(Or just why I might discharge myself from everything in 2 weeks because the mental health system is traumatising me.)
I’m currently supported by a complex team of multidisciplinary staff which include a Community Psychiatric Nurse in the Recovery Team, a specialist Social Worker in the Mental Health team, a Community Psychiatrist, a Talking Therapist working with me in Eye Movement Desensitisation and Reprocessing, and a specialist Occupational Therapist that helps with sensory processing issues. I have been well supported in the last 12 months by my therapist and CPN, however at the end of January, to say the wheels began to fall off is an understatement.
I underwent a course of intense therapy that resulted in part, with me being admitted to a crisis house for 2 weeks. My illness delayed a number of vital actions I needed to take such as finding and recruiting a new personal assistant to help me at home, and so my recovery has been stressful but I have got back to good health. Since then, the really frustrating and sad thing at the moment is that the most stressful part of my life is attempting to get any sense and commitment out of the mental health services I work with
About 5 weeks ago (bearing in mind I was suicidal on the 21st February) my CPN let me know by email that she was starting a new job and could no longer have me on her caseload. I also found out that the colleague I was being transferred to was on a temporary contract via a recruitment agency. I am autistic and so unexpected change is always a big no-no for me, as well as really needing consistency and familiarity. Obviously all aspects of this new development raised issues for me, not in the least because my new CPN could leave at any time with little notice.
After I fed-back via the PALS service this decision was reversed, however I still have no idea who the replacement might be, and just when the transfer should be taking place. This has been ongoing for about the last 5 weeks. Reason given is that the manager that needs to make the decision is currently on holiday.
Additionally, a week later, my therapist who I work with via the Talking Mental Health Derbyshire, informs me that the decision has been made to transfer me to clinical psychology as the level of distress I had demonstrated meant they could no longer work with me.
I just want to put this into context. I have been discharged, halfway through a course of therapeutic treatment, with a therapist and an environment that I am familiar with and trust in, with no discussion about what I need or want. As far as I understand, the transfer to clinical psychology could mean beginning at the start of another assessment period with a new therapist who may not even be able to offer me EMDR therapy. This is after I have spent 18 months doing just this with the IAPT services, following a referral from the specialist nurse consultant who diagnosed me with ASC. However as nothing has of yet been provided in writing as per my reasonable adjustment request I am not sure either way. The interesting thing is that my conditions haven’t changed, my presentation hasn’t changed, it seems like the only thing that has is the perception of me as a patient in relation to services provided, and that entitles me to be dumped into another area without the least warning or thought for how this will affect me personally or the work I have been doing for unresolved trauma so far.
When I found out about the transfer to clinical psychology it only came a week after the email about my CPN changing. Putting this into context , I don’t deal with unexpected change well, so to get the double whammy I’ve just outlined resulted in a full meltdown in my therapy appointment. Bonus for me. The other hilarious thing is that this kind of meltdown (which is well documented as a trait of ASC when people with the condition are put under enough of the right kind of pressure) is just what is being used to justify a diagnosis of Borderline Personality Disorder of which you will hear more shortly.
I asked for a meeting in the following 2 weeks to discuss this. Fast forward 3 weeks and guess what? Nothing. Another contact this time via phone a week ago. “Someone will be writing to you in the next week”. Guess what? Nothing.
The thing that really frustrates the hell out of my about this is that every little thing that you do becomes pathologised, like the meltdown I mentioned, leading me to the the last issue I am debating whether to take further or not. My diagnosis of Borderline Personality Disorder.
This was given to me by a Crisis Team psychiatrist in 2015 sometime. I would not know or have found out about this other than for a letter I requested be written in support of a benefits claim I needed to make.
At the time the diagnosis for BPD was made I already had a well established diagnosis for Autism. Despite the fact that there is well established understanding amongst the medical establishment that women on the spectrum can be misdiagnosed with BPD (see links below) I am still no further to resolving this that i was in December 2015.
- Emergence, personality disorder UK based charity discussing how misdiagnosis in women in common
- Dr Judith Gould, an expert in Autism talking about misdiagnosis in women
Despite me presenting this and other evidence about how I behave being explained within the framework of ASC (which I am happy with the validity of) 2 years later I am still waiting to even be seen by a psychiatrist who has got enough consistency of contact with me to begin to establish if the diagnosis is valid or not. I just want to be clear about the BPD diagnosis as well. It was made by a crisis team doctor and his team who, given the nature of their role, cannot really say that they had an opportunity to reach a balanced and historical point-of-view of me. No psychiatrist in Derby has even seen me more than 3-4 times. No-one has ever taken a full case history, no-one has asked me about my presentation in childhood, or my twenties. The only time the crisis team doctor in question ever spoke to me prior to making his diagnosis about this was after I had been dropped to the adult psychiatric unit in a taxi because I was too distressed to drive. I was then left for nearly an hour in a highly stimulating environment, which rendered me needing to hide in the reception area behind the seats, curled up in a foetal position with my eyes screwed shut and my hands over my ears. I did not probably even have mental capacity to have the discussion about BPD or any other diagnosis, but, like most staff I have encountered, because they know very little about high functioning women on the spectrum, they were unable to recognise this.
I have had several contacts with my latest community psychiatrist, who is a nice guy and also a locum. We have discussed my BPD diagnosis and how it could just as easily present as one thing as another. I guess what is boils down to for me is that no-one has ever actually explained to me satisfaction just how I meet the diagnosis of EUPD.
Admittedly I have some of the traits, such as infrequent self harming episodes and occasional suicidal behavior, however I have a clear idea of who I am, my goals and relationships in life, I am self disciplined, and generally not aggressive. I do not have issues with recreational drugs, alcohol or binge eating. I am in a stable relationship and no issues with my parenting have ever been identified, despite several referrals into social care because of how ill I have been in the last 4 years. I have also been offered no specific treatment for this personality disorder that supposedly I have despite the 2 year old diagnosis.
I’ve also done some reading on the DSM5 in relation to personality disorders and their diagnosis in general. There are a few gems in relation to me:
- The pattern is stable and of long duration, and its onset can be traced back at least to adolescence or early adulthood (Criterion D). [How can you tell this if you have never asked?]
- The pattern is not better explained as a manifestation or consequence of another mental disorder (Criterion E). [I have tested as having clinically significant level of unresolved trauma symptoms.]
- or another medical condition (Criterion F). [I had pre existing diagnosis of high functioning Autism.]
- The diagnosis of personality disorders requires an evaluation of the individual’s long term patterns of functioning, and the particular personality features must be evident by early adulthood. [This sounds like a case history to me, which I definitely haven’t had in Derby].
- The clinician should assess the stability of personality traits over time and across different situations. Although a single interview with the individual is sometimes sufficient for making the diagnosis, it is often necessary to conduct more than one interview and to space these over time. [ So being assessed by a crisis team doctor, who spoke to you once about your experiences in relation to the diagnosis in a state of high distress might not be entirely appropriate?]
- The development of a change in personality in middle adulthood or later life warrants a thorough evaluation to determine the possible presence of a personality change due to another medical condition. [Like the preexisting diagnosis of Autism that has been well established previously combined with the stresses of having a new baby?]
- When personality changes emerge and persist after an individual has been exposed to extreme stress, a diagnosis of posttraumatic stress disorder should be considered. [my exposure to extreme stress has already been established in other areas, but not discussed in relation to my diagnosis for BPD}.
Everything that you do becomes a trait of your mental health issues. I am conflicted, distressed and now feel I am becoming traumatised about my BPD diagnosis and how it has been dealt with to date. I know on one level that it doesn’t make any difference to me as a person or my personal relationships, however it still doesn’t sit with me right. One day I can say it doesn’t matter I’ll leave it, but there is still a niggling feeling that this just isn’t the right thing to do, that I should fight for what I think is the right diagnosis. However, the fact that I have changed my mind several times about this and discussed these changes with my CPN is held up as an example of being impulsive, and used for further justification for the original diagnosis, just like my infrequent meltdowns are held up as example of anger outbursts.
At the moment I feel like I am ready to reduce the amount of support offered to me, but trying to get a coherent plan in place to achieve this is proving impossible. It is not right that people who are vulnerable (and I don’t consider myself to be that vulnerable at the moment) should have to chase and chase and chase to get anywhere. I am at the point now where if I can’t get some kind of coherent decision made I feel like the only option left open to me is to discharge myself from all services, as the amount of grief this is causing currently far outweighs the benefits.
Should this really be it though? How on earth can anyone say that good mental health provision is being made when I am trying to challenge a diagnosis and put in place a plan to reduce support and i can do neither in realistic time scales. it has been nearly 18 months for the BPD diagnosis and over a month for sorting out plans, and I am no further ahead in either camp.
The only reason why such crappy and piss-poor service goes unnoted it because it is not spoken about, and because of the stigma around mental health. It’s time we changed this and I’m proud to add my voice to the growing number who are talking about what is wrong with mental health provision and just what needs to be done to change it.
(As a small and positive post-script I would like to offer my thanks to Dom Cushnan who has encouraged me to blog about my mental health experiences. This is the first of these, and it is a really great step forward for me to begin to speak about what is and has happened in public for the first time.)