So over a week ago an Asthma review was made for today. I explained my condition is complicated by something called Vocal Chord Dysfunction. Nevertheless an appointment was for today. Last Night I got text confirming the appointment. And this morning it was cancelled, after they read the consultant’s letter. Effectively agreeing with what I said over a week.
So after already having sensory problems in the morning this added to the distress.
There are many more examples I have experienced, of the NHS not being geared up to help those with ASC.
I’ve always had a great experience with the nhs but I’ve lived in other countries where the nhs is a service they could only dream of, so maybe my expectations aren’t as high as some people’s? And I don’t use the nhs that often and I generally know what I want before I go. I only really use them as a last resort or to get meds or specific tests. As for treatment, I generally treat myself or seek alternatives.
The nhs aren’t geared up for lots of things but they excel in many areas, compared to most parts of the world and the people who work in the nhs, generally work very hard, with little thanks and small pay and they do their best. And I couldn’t love and appreciate the nhs any more if I tried because I was diagnosed via the nhs and my diagnosis saved my life. So in my mind, I owe my life to them and one of my goals, ever since I got my diagnosis, is to set up an autism group that supports adults through the diagnosis process and beyond and I want it to link up to the diagnostic service so they can sign post people to the group as soon as they come forward for assessment. It will be my way of giving back to thank them for my assessment and diagnosis.
I think if they had to cater for everybody, they wouldn’t exist. But they’re slowly improving all the time, or at least they’re trying to. I find if I tell people I’m autistic, from the off, and what I need or don’t need, people seem to meet my needs. But granted, I do have to tell them, but how would they know if I didn’t tell them?
And PALS (if you’re in the UK) will take your comments and they have set time frames in which they have to respond to you. You can also ask for specific warning signs added to your notes which will detail any specific instructions the nurses etc need to follow, such as being extra mindful to stick with agreed times and dates etc for appointments. They can’t always accommodate because of course the nurses etc are human too and they may not make it into work one day, but if they know, they can make extra efforts to make sure they meet your needs.
It’s the same with the DWP. They introduced me to another member of staff, and they got her to spend some time with me so if my worker wasn’t around, she would be there as a back up, but I would never be asked to see her. It was noted from the beginning that I would never be asked to see anybody else, under no circumstances. But the other lady came in handy when I had a meltdown in there one day and my usual lady was off the floor at that minute, so the other lady took charge and sent for my lady and managed things until my lady got there. So it might be a good idea to speak to PALS who may be able to advocate on your behalf to stress the importance of keeping as close to agreed times and dates as possible. It’s often a big thing for us to go to the doctors etc, it is for me, so anything to make it easier, the better.