Well blinkin' heck, time for another blog post. I don't wish to alarm you, but during the last few weeks, I've been lucky to survive an extreme reaction to some new medication. I spent two weeks being passed between my GP, the crisis team, the community mental health team (CMHT) and 111. Nobody seemed to know what to do with me and I fell through the cracks. I was left completely unsupported by the professionals, despite being a CMHT patient.
It seems the confusion came about because I no longer have a care coordinator. I was discharged last year because I'd been doing so well. I discovered that there is no quick mechanism for unwell patients to return to CMHT care once they've been discharged. This seems like a dangerous oversight. Surely, people like me with 'severe and enduring' mental health problems need support if they happen to relapse?
Now that I'm feeling better, I'm going to write to the CMHT and give them some feedback about the lack of care I received. It's been a sorry saga of no call backs, passing the buck, misinformation and general negligence. My GP was equally unhelpful. It would have been so easy for me to have become another statistic, for my name to be added to the list of catastrophic failures by mental health services. Every time someone slips through the net and sadly dies, the NHS trusts involved talk about 'lessons learned' and changes made. I saw no evidence of this.
In other news, my boys had their regular appointment with their kidney consultant recently. Unfortunately, things are starting to progress with Joe's kidney disease. He's been given more medication to manage this, with the prospect of starting further medication at his next appointment. Evan will also soon be started on an ACE inhibitor to protect his kidneys. I'm happy to report that both the boys are well in themselves. Joe's GCSEs are coming up in a few weeks, so it's good to know that his kidney problems aren't causing him to feel poorly.
I've mentioned previously on Twitter that I've got a meeting with school and the teacher of the deaf to discuss provision for Evan. It's about making sure that the combination of Evan's deafness and autism isn't getting in the way of his learning. Right now he's not doing himself justice at school and his teachers have asked us for advice as to how they can help him. Deaf CAMHS (the people who diagnosed Evan) can hopefully help us give the teachers the support they need. The teacher of the deaf has agreed to make the referral to deaf CAMHS, so hopefully we'll have things in place long before Evan sits his GCSEs.
That's all my news for now. Thanks for reading and I look forward to catching up with you soon. X
