Recently, I was asked to attend a meeting regarding putting together a report/review for the government on the Personality Disorder services in Northumberland. I had planned for this post to consist of the questions I was given/asked and my answers; but when I started writing a bit of the background for it, I found that I had a lot to say (what else is new?!)...
I became poorly in 2009 and because my first symptoms were auditory hallucinations, the professionals wanted to assess me for psychosis. It was ruled out.
The first time I heard my name being associated with Borderline Personality Disorder (BPD), was when I was given a copy of the discharge summary that would be kept in my records and sent to my GP. I'd taken an overdose and had complied with the necessary medical treatment and was allowed home. Since it was nowhere near being my first experience of self-harm or attempting suicide, I'd had numerous discharge summaries but had always screwed them up and thrown them away without reading them. Firstly because I didn't want to read about what I'd just gone through and secondly, because I assumed that everything in it would be no different to what had happened and what I knew of it. For some reason, I just happened to read my copy of the discharge summary that one time, and it listed BPD as my 'preliminary diagnosis.' When I asked my mental health community team about it, I was told that it took years to diagnose 'something like that' and that Doctors were reluctant to give me the diagnosis because of my age (I was 18, almost 19). My CPN (Community Psychiatric Nurse) also told me of the connotations that BPD gave professionals; that there was some staff and especially Psychiatrists, who refused to accept BPD as a diagnosis and that most believed that once a service user was diagnosed with BPD there was no hope for them. Some classed it as a death sentence; that the sufferer was a write-off.
Within a year I underwent a Mental Health Act assessment in a different region to the one I lived in, after having run away to there and overdosed. Unbeknowingst to me the Psychiatrist asked me a question for each of the possible nine symptoms of BPD. He then told me that a person must have at least five of the nine symptoms to meet the diagnostic criteria, and that I had all nine. When I was back home, I told my CPN what the Psychiatrist had said. I asked 'so are we going to take notice now?' And she said that they still felt I was too young.
Within weeks I was given a different CPN who believed that I couldn't be properly helped or supported if I didn't have a diagnosis; ironically, once I did have the diagnosis, it felt like Northumberland Mental Health Services got worse. Our local psychiatric hospitals were full of staff who either had no experience of working with patients who have Personality Disorders, or who held the same connotations that I'd been warned about. It's obvious that this would have a negative impact; my difficulty was that being hospitalised was a last resort in my care and so I would only be admitted when I was at my very worst; this meant that the last thing I needed was to feel judged and misunderstood, as it would cause me to feel more suicidal. There was a Crisis Resolution Home Treatment Team (CRHTT or Crisis Team) in our area but they were inconsistent. There'd be staff in the team who were amazing and supportive, and then there were ones (the majority, in my opinion) who believed I was attention seeking and that I wanted to be hospitalised! Firstly, the attention I got from my behaviours was never good and secondly, as I've said about the hospitals, they aren't the most amazing of places. Personality Disorder knowledge was so poor in Northumberland that it took over two years before anyone thought of DBT, and even then it was only because I'd had the same CPN for years and so she'd gotten to know me, understand me, and have hope for me.
During DBT, I had my most stable period in my mental health, but unfortunately having to talk in depth about my trauma in order to learn the DBT skills relevant for helping me cope with it, seemed to intensifiy the hallucinations. I ended up back in the self-harm cycle and on a hospital admission the Psychiatrst suggested a specialist PD Hospital. Neither myself, my Mum or even my Community Team had heard of such places!
After the first specialist hospital (the nearest or our area) refused to admit me after assessing that my risk was beyond their capability, I ended up in a hospital 127miles from home. In hospital, a member of staff told me that if I'd lived in their region, I would've been admitted to their hospital a hell of a lot sooner. Since I entered recovery from this admission, I was so thankful that I'd managed to survive through the three years of mistreatment in local services.
And now, seven years since it all began, I'm involved in assessing the services that were all dramatically improved whilst I'd been in hospital in Bradford! Initially, there was some resentment that all of these services hadn't been there when I truly needed them; but I focused on the fact that I could help in ensuring that would never happen to anyone else. There's so many new services to support those with a PD in Northumberland that I focused on the fact that they're now available rather than considering if they're not yet working well enough.
If you live within Northumberland and have experience with the Personslity Disorder services that you'd like to share then please drop me an email and I'll ensure it is passed onto those writing the report.