I realise this may not be the classiest way to introduce myself, but I could really use some advice.
I'm in my forties, and have a long history of depression. I've long suspected that I may have other issues. Despite my history, I suffered in silence for many years, and only sought help in 2010, and saw my first psychiatrist in 2013. I asked if she thought I could have Asperger's Syndrome, and she was very dismissive. Four years ago, I was diagnosed with ADHD by a different psychiatrist. I asked if he thought I could have Asperger's Syndrome, and he didn't even acknowledge the question. I didn't push it. Because of the manner in which my questions were handled, I never pushed my other suspicion - that I might be suffering some degree of PTSD.
Over the last year or two, I've been suffering gynaecology-related health issues. Last year, I went for minor sugery. I had been told what to expect, and was handling things okay. I knew that I would be seeing a different consultant, but when it was clear that they were not going to follow the agreed plan, I lost it. I felt completely ambushed, and I am still suffering the psychological after effects, and I still have not had the treatment that I need. When I complained, they made up lies about me (complaints process is ongoing, and at least I can absolutely prove some of their lies).
This year, my psychiatrist has come around to the idea that I may be on the autism spectrum. He's given me questionnaires, and phrased my clinic letters in terms of "probable ASD". I'm struggling to access the healthcare that I need. My local hospital is not the one where I had the awful previous experience, but they are struggling to deal with me. I'm the first to admit that I'm a pain in the preverbial backside, but no-one there seems to be capable of taking any initiative to provide extra help to me. The consultant there wrote a letter to my psychiatrist, who wrote back stating something along the lines of "Ms ... thinks she might have ASD, but is aggrieved that no assessment has been carried out". Nothing about the questionnaires, and nothing of the "probably ASD" of the clinic letters, and nothing of the effective "care instructions" that he had put in a letter to my GP. (He'd made a comment along the lines of the need for me to be handled with patience and kindess, or words to that effect). I have repeatedly described symptoms of PTSD, and told several doctors there about the probable ASD. (I have been in for semi-emergency assessment a couple of times, but keep cancelling appointments because I cannot deal with things).
The hospital cannot or will not make an effort to understand the problems I have. They cannot or will not provide any help or support. They cannot or will not make any accomodations.
I really feel as though I've had enough and I don't know what to do. My Hb is down to 58 g/L (again). I need surgery, but they cannot support me, or listen or do anything to ensure that I'm not put in the same position again. The lies that I've been told, and that have been told about me have made it almost impossible for me to trust healthcare professionals. The place where I had the first bad experience knew how much I was struggling with the after effects of what they did. They knew that I was struggling with trust issues because of what they did. So they made up lies about me. I don't know what kind of people could do that? (Registered nurses, apparently...)
Does anyone know if there is any way to access an autism-friendly/PTSD-friendly gynaecology service? Does such a thing exist? Anywhere in England would be considered. (I would include Wales, but I don't know if I could be referred there).
Oh, and I'm female. Just in case you didn't get that from the title. Hi.
I thought I'd call a few different hospitals that were semi local. . I spoke to one of the receptionists, and briefly explained the situation. She clearly didn't know what to say, but said "they're really good here, they know what they're doing. They won't bash you." "What!?!!" was my reply. "They won't bash you... they won't do anything you're not comfortable with".
I'm unsure if this is Bristolian slang, but if "they won't bash you" is the most positive thing a receptionist can say about the consultants, I think I'll cross that one of the list...
I don't know where in the country you are but I found these 2 hospitals that looked like they might try and help a bit.
Hopefully I have done the links the right way.
Thank you so much for your reply. I really appreciate it. (And the links display fine, thank you). In particular, where I do not have a formal/full diagnosis, the language and job descriptions etc are really helpful. I'll definitely check out the more local of the two hospitals next week.
I did just type out quite a long reply, which got lost as I tried to post it. That will teach me to copy the text before I hit "reply".
I found a blog post which seems to outline many of the particular issues.
I'm kind surprised that there doesn't seem to be more information out there, though.
My local hospital is quite large, and does have a good reputation; however, they have no clue how to handle me, or what to do with me. They have made appointments for me, but I get stressy, lose it completely then cancel the appointment because I can't handle things. Then I get bumped to the back of the queue. My GP has said to me that he would go with me to the hospital if he could, but that he can't take the time away from the rest of his patients. I understand that, but there is no support at all available to me.
One of the more senior patient care-type people at my local hospital has said that she'll look into things early next week, and I might be able to meet with her. I need to make a list of things that would have made this year long nightmare easier on everyone. Some of the suggestions will be little things, but some larger. Like one of the causes of concern could almost certainly have been looked at via MRI not surgery. Yet they refuse to refer me for an MRI, even though I was offering to pay for it. I don't know if the scanners make that awful thumping noise that they seem to make on TV shows like House, but I think I could handle that more than I could handle waiting for surgery.
I've contacted the Royal College of Gynaecologists, to see if they have any advice or guidance, but I have not heard back from them yet.
This isn’t specific help regarding gynaecology services, however I often find that the NAS ‘autism passport’ helps me to get adjustments and care appropriate given my autism when I am in hospital, no matter which department I am visiting. The link to it is on this page along with some more information about it (though you can create your own more specific to you of course):
Thank you very much for the link. It really does look like a good resource. I can really see that it would help to prevent many potential issues just by making people aware of an individual's sensitivities.
I think where I'm not considered to have a full diagnosis, it wouldn't feel quite right to hand over one of the passports. I do have an Advanced Decision that I keep with me. I guess I could print one of the passports off, fill it in and keep it with that.