Ripple Effect

Yesterday, I was supposed to have my second CBT appointment; the first one in which I would be receiving active help, rather than going over my medical history. Unfortunately, it was cancelled, and even more unfortunately, because I was getting a lift there with W's dad, we had stayed at their house, and weren't at home to get the call telling me that it was cancelled, meaning I found out about 20 minutes before I was due to see him, a short while after I'd arrived at the hospital. I also had a fairly serious seizure an hour or so after we got back, which I'm assuming was related.

It was frustrating, certainly, but these things happen. I would assume it was down to the specialist being ill, and it certainly wasn't the fault of his secretary that I wasn't at home, and that my mobile is shortly to be consigned to the bin for not picking up her second attempt to get hold of me (damned thing).

However, it did leave me in something of a worry. Maybe it's silly - very probably it's silly, in fact - but I can't help wondering how long this absence will go on for, and whether I'll actually get to have my rescheduled appointment in a couple of weeks. After all, this isn't the first time I've had appointments cancelled. Or even the second. We're getting on for double digits here. I haven't seen an epilepsy specialist in over a year now - and no, I haven't been forgotten; I got a letter a few weeks ago explaining she was still unwell, and I would be notified when she returned to work. (How helpful to all the people in the rather large section of the county she covers.)

Absences happen. It's a fact of life. The fact that I seem have encountered a whole sequence of these in the last few years is most likely some sort of miserable coincidence, too. But part of me can't help wondering if it is in part the enormous workload these specialists face. My neurologists see patients with problems ranging from tumours and trauma to epilepsy, Parkinson's disease and dementia. Their workload is immense, and there are too few of them. My first epilepsy nurse told me we in the UK have about 30% of the neurologists that are really needed for everyone to have appropriate access. Now, that's an old anecdote now, but I would imagine there are still far too few. Neurology is a wide field, and they are expected to both specialise in one area, and give appropriate advice to the full range of patients their department sees.

Likewise, Epilepsy Nurses must fill the gap for patients with epilepsy, which is, after all, the most common neurological condition in the UK. I don't know how many patients are currently waiting on the books of each epilepsy nurse in the country, but I would expect the number to be substantial. How many people can keep up that kind of workload forever? My epilepsy nurse would always go over time with her patients. It meant that if you had an appointment at the end of the day, you could go in an hour to so after the appointment was supposed to start, but it also meant that she worked past the time she should have been going home, pretty much every day. And she happily gave patients an email address to contact her if they had a problem. She also covered four or five major towns in a week; a different one each day.

According to my latest specialist, non-epileptic seizures are more common that epileptic ones. They are harder to control, too. How large is his workload? Is it so strange that I worry about him going sick long-term too, when this is the enormous burden of patients that people such as himself have to work with every day? Admittedly, my health condition is related to stress, so I'm possibly not the best person to say this, but honestly? That kind of pressure is something I couldn't even conceive of coping with. Isn't it time that neurology got more attention and funding?

Married life, and other things.

To be honest, it's pretty much identical to life before, except that now I have a stack of Thank You cards to write, and a lot of paperwork to fill out to change my surname. I guess that's a slightly contentious issue to some people these days, and while I don't personally feel it's a choice I have to defend, I seem to have found myself explaining it a few times over the last few weeks. Several people have asked whether I would or not. At the end of the day, it boils down to the fact that I want the same surname as O and M for convenience. I personally think that most double-barrel names get clunky in the end; what if O or M wanted to double-barrel their name again - would they then have the awkward task of choosing a name to drop? I worry too much about that sort of thing, although I quite like the sound of other people's longer surnames.

Anyway. So, for me, the double-barrel option was out. Asking W to change his name was something I didn't even consider, mostly because it would sound ridiculous. Honestly, you'll have to trust me on this one. So that left me with changing my surname, which suits me just fine - my new surname is nice, and flows just as well with my name. Plus, I get to keep "Hill" for writing purposes, which I always knew I wanted to anyway. Essentially, I get the best of both worlds.

Still. That's not my sole, trivial point for the day. I still haven't had an appointment for Dr. Neuropsychology, although I might not get one - I had a letter today saying I might simply be referred for CBT. (More on that another time.) I'm still having seizures fairly frequently, although thankfully not several times a day. The wedding was clearly a big source of stress, which is obviously  over, but I am still not in a position where anyone is going to want me working for them. If this is my baseline, and I know that working increases the number of seizures I have, that's a non-starter. Three or four times a week at least is no good for people, especially just for a part-time employee.

I've also had a nice fat form from ATOS in the post, for me to fill out and prove I'm still ill. What joy. I must admit, when I first opened the letter and saw who it was from, my heart skipped a beat. ATOS do not have a good name among people who claim benefits relating to ill health and disability, predominantly because they appear to be skewed in the favour of slashing the number of awards, rather than assessing people fairly. I don't really have the energy to explain the whole debate here, but I will point you in the direction of blog outlining some of the more serious concerns. It's an interesting read, although the topic is certainly worth researching for yourself, because it affects one heck of a lot of vulnerable people across the country, and a long-term illness or disability could affect anyone you know, or even your future self.

I try not to get too emotive and biased about things any more, because I don't think that kind of argument ever really resolves anything - it just descends into "sob stories" that people dismiss as individual cases or overly subjective. But I do and will continue to encourage people to look at these issues more closely than they otherwise might. Very rarely is the overview of a situation as accurate as the full picture, and very rarely, in my opinion at least, is the story presented on the news and in the papers anything other than an overview, often one which is slanted to give weight to a particular point of view.