and also need an ickle rant. Re my autoimmune stupid f’ing thing..
Firstly it’s got worse. I only had external rashes (OK really unbearably itchy and all over my body but…) when I saw the specialist in January after a 2.5month wait for an appointment. The external spots have improved but joy I now have internally. At my January appt my specialist informed me she was relieved there was no evidence internally. The external rash can be managed by steroid creams but internally the treatment plan of oral steroids has pretty horrid side affects and was to be avoided at all costs.
I also had blood tests in January.
Whilst with my specialist she confirmed my appt for 4pm on Tuesday 24th February. Approximately 3 weeks ago, I noticed signs that it may have spread internally but figured if it didn’t get any worse I could hang on for the appointment already in the diary. However a couple of weeks ago the pain and ‘affects’ of the internal disease got too much. I visited the specialist office in the hope of seeing her briefly to be able to get my suspicions confirmed and diagnosed, manage it or at least book an urgent appt. I was sent away by the receptionists as I wasn’t a patient there!
Next stop my GP. I had to make an appointment… and wait for the appointment… but relatively quickly got one on 6 February and she put in an urgent referral to be seen by the specialist with the new symptoms.
16 February I chased this up.. the pain now getting unbearable at times and also having a permanent ‘scratch’ in my throat whatever I eat. Call me old-fashioned but I’d like to get that all sorted!
Apparently my ‘referral’ wasn’t urgent. But I got the secret code and phoned the specialist to make an appointment. The first one being at the end of March. I said there was little point and disappointed as I was, at least I was seeing her next week. They then told me that there was no appointment for me next week either!
The specialist office receptionist called me back later having checked with the specialist who said she didn’t need to see me again. Hmmm so I guess that’ll be no follow up, or blood test results then?
I called my GP to get an urgent appointment there. I was told there aren’t any appointment for a week or so.
I called the specialist surgery back again, in tears by this time, to be told there was absolutely no way they could get me an appointment and that I should go to A&E! (And they wonder why A&E is busy!!!!)
I called my GP back again… they manage to find me the last appointment of surgery times yesterday evening. She was horrified. She inspects my mouth and throat and also does an internal examination and confirms there are lesions in both areas. She looks at her notes and sees a letter from the specialist to me following my January appointment that says she’s got an appointment with me in a month’s time to follow up. I neither received that letter nor (I now know) have that follow up appointment. She faxed this, with a covering note saying it is urgent, to the specialist surgery last night whilst I was there, asking that they ‘fit me in for an urgent appointment’.
This afternoon I call the specialist surgery to discover the fax is still on their fax machine, that nothing has been done, that they have no appointments until the end of March and, after quite some time on the phone, they would now discuss it with the Dr tomorrow to see if she can make time for me soon. No urgency. No apology. And no reference to the letter from the specialist confirming that she had an appointment in the diary to see me!
Allegedly I’ll hear from them tomorrow.
Apart from being in pain and really not loving the side effects of the spread of this disease, I’m so very disappointed with this specialist surgery’s approach to healthcare. It’s no wonder that people are unhappy with their NHS when things like this happen. I’m fortunate in that the NHS have been excellent to date… but it’s individual cases like this that leave a bad taste, get reported in the press and then make people care less about keeping our very valuable free National Health Service available to all.
I know that what I’ve read on the British Association of Dermatologists website that if left untreated it can become erosive internally. Call me old fashioned but I think this may be an extreme weight-loss program!! And also once ‘erosive’ it may develop into cancer… been there already and not sure I really want to do that one again particularly when it may be avoided if managed by drugs and care from a specialist early on!
Rant over… but thanks for listening!