Saturday, 12 May 2012

Long in the tooth

I think I'm going to lose a tooth, or maybe two.

My only chance to avoid this will be to drag myself to the dentist on Monday. Unfortunately I have started a flare and have been flat on my back in bed for the past 5 days. I can't sit up for more than a few minutes, am in horrible amounts of pain, even shakier than usual and other symptoms are playing up which I don't care to mention here. Right now I can barely get to the toilet, let alone out the front door.

Another thing to consider is that dental work is far from easy for me. I have to go to the hospital for it because in the words of my last "real" dentist: "we can't do any treatment on you here because we don't have resuss equipment". This hasn't bolstered my confidence much. Furthermore I have to increase my steroids before even routine treatment such as fillings and regularly have flares afterwards. I am supposed only to have treatment if I am feeling "well" (this is a very relative term).

But overriding these considerations is the inescapable fact that I have 2 teeth which now need urgent treatment.

I already had to cancel my hospital appointment with my consultant gastroenterologist last Friday. I had been on a 4 month waiting list. I will now have to wait a further 5 months to see him. This of course is dependent on me not being in the middle of a flare at the time of that next appointment, otherwise I will have to wait another 4 to 5 months.

I am in the same situation with my teeth. Monday's appointment (May 14th) is actually a cancellation from back in January, which itself was a cancellation from November. In the mean time the holes in both teeth requiring work are getting noticeably larger.

You see, the NHS has a policy whereby any patient who "wilfully" cancels an appointment goes straight back to the back of the waiting list, no matter what the reason. I have pleaded with doctors, consultants, managers and receptionists but to no avail.

The net result of this policy is that the very sickest patients, those who may well, ironically, be too sick to go to hospital, face sitting through the waiting list not once but twice or even three times. By the time they see the doctor the problem is far more advanced and they are even sicker. It is a vicious cycle. Some of the permanent symptoms I have today are due to these delays.

I don't have to lose these teeth. Under a good system I would have been given an appointment when my November flare ended and would have been seen in December. They would have been fixed by now. Instead I face completely avoidable bad dental health.

Likewise I could have been offered an appointment with the gastroenterologist when this flare ended. rather than a 5 month wait. Who knows how much worse things will get in that time or whether irreversible damage will be done?

While I understand that missed appointments cost the NHS a lot of money, penalising chronically ill patients must equally cost the NHS a lot of money in the long run and that is without considering the human cost. I know for a fact that while waiting for one of these delayed appointments, the health problem has reached crisis point and I have ended up being dramatically hospitalised complete with blue flashing light ambulances (although most annoyingly I have always been unconscious at that point and would like to register my profound disapproval of missing such an exciting event).

Surely it shouldn't be difficult to identify those who might miss appointments due to genuine serious last minute health issues. Those patients should become high priority and offered appointments as soon as possible. This would avoid further deterioration of already precarious health.

In the mean time I worry about Monday and the future of my teeth if I don't go and my general health if I do. It is a catch 22 with absolutely no way out.

EDIT: It is now Sunday morning and I am (*whisper*) feeling tentatively a little better (ie I was able to stand up without immediately falling over and I have made it into the daybed in the lounge rather than stuck in the bedroom). I doubled my steroids 3 days ago in the desperate hope that in a fight against time and illness flare the meds might win. Please keep fingers crossed and cheer on the steroids!

Tuesday, 1 May 2012

BADD2012: You can type, therefore you can work

Today is #BADD. No, not  "Being A Dastardly Disabled" but "Blogging Against Disablism Day".
I've known this day has been coming for quite some time.
I like blogging.
Recently I've had some really lovely comments about my blog. It even appeared in the Guardian Social page (shameless plug).
So where is my brilliant blog I hear you ask?
You see, despite being able to type coherently at my laptop and therefore (according to most Daily Mail readers) perfectly able to get a job, I have been too ill to sit (sorry, lie) down and write something.
I HAVE tried.
I admit it hasn't been helped by the fact that I was assisting in the "We are Spartacus" response to the government consultation on PIP. But please note the key word "assisting", not "writing" as was the case for the Spartacus Report itself. That honour goes to the fantastic @narco_sam.
Thirty minutes of "assistance" and 3 hours of rest. This has been my schedule for the past 10 days or so.
Yet because I am able to write a paragraph like this I am judged by a large part of the population and deemed a scrounger. "You can type. You can spell. You can write well. Surely there is a job you can do?" they cry.
I would respond to this. I really would. I would explain about the pain, the memory, the concentration, sitting up (or not), wheelchairs, oxygen, bowels, seizures, emergency hospital admissions... But you see, my 30 minutes are up and I have to go and rest.