I have been surprised recently by the assumption that EDS and associated distress is a Mental Health condition. Excuse the length but I would like your input - is this how patients are treated and is there a way to shortcut this confusion from services? Anything I can do? This is a repeat pattern over a few years now - being diagnosed in my late 30s was a relief but the rest perplexes me.
I've been deteriorating. I had to keep calm and articulate yesterday as I explained my current health crisis to two great call handlers and one Dr at 111, then two helpful paramedics, who didn't know what to do so the Mental Health Street triage team of a police officer, paramedic and senior mental health nurse arrived. Then the police officer and paramedic had to ask the mental health nurse to leave as he was being aggressive towards me which was fairly unhelpful. They were shocked at how he spoke to me and how aggressive to someone in pain and distress. He was rude, then started accusing me of 'picking on him'. I was crying at points but not aggressive myself.
Thankfully I was heard and listened to by the last two - but after six hours triage I was very tired, still in pain, with nausea and was very relieved they listened and I was heard. I was handling my distress but it wasn't easy. One's wife has a chronic pain condition and the police officer was also calm, humorous, empathetic and they and we turned the interactions around. We agreed I need urgent and overdue tests, but A&E unlikely the right place. They assessed me as needing full blood count and urgent care, but we agreed this should and could be done in the community. They were also empathetic about my waits to see local pain services and poor local coordination which frustrates them too. They reassured me they'd put a referral through to my surgery to remind them they promised an urgent review but six months have passed since that agreed plan and nothing. They assured me I would be called this morning. They were frankly delightful.
All local services 'signpost' me back to UCLH or RNOH who say, no, this is your patient, we discharged her into your care, follow the treatment plan, manage this locally and with the GP as your hub. This afternoon I was called by a new GP who said this was too complicated, she's never met me and she'll call me next week. She said what's happened up til this point is nothing to do with her. She read some notes out to me from her colleague at the start of the year that were inaccurate - apparently I was referred to 'social prescribing' but wasn't. It was stated I declined. That shocked me. I used to take simple notes with me to explain my conditions and history along with all consultants letters but this is poor, and my poor health and lack of support is obviously having an effect on my mental health. Mental health services have been serially unhelpful as they don't seem to be aware of chronic conditions or EDS. My advocate retired last year and I have been waiting to have her replaced. I have anaemia, pain is substantially worse, my mobility is poor and worsening and I struggle to do activities of daily living. Apparently all these can wait.