Update on my rant

How cathartic was my rant yesterday for me?  Huge.  Thanks for listening.

Clearly it also had an impact and things have moved on in just one day.  Was it because of…. My rant?  My tears?  My persistence?  Or actually good Drs but bad gatekeepers?

Very early this morning I received a call from the receptionist at my GP surgery.  Another Dr in the practice whom I’ve not seen for several years wondered if I’d got time to call in to see her.  The receptionist knew nothing more and said if it was difficult to come in to an appointment, then the GP wanted to speak to me on the phone later on today.  Of course I’d make time for a face-to-face appointment.  My appointment was booked for late morning.

During the next few hours my mind was busy wondering why I’d been summoned?  Was I to be told off for making a pain in the ar*e of myself chasing up appointments?  Did they have the blood test results and wanted to share them?  Were they able to refer me back to the dermatology specialists urgently.  Was it good news or not?

I turned up 20 minutes early for my appointment and was quickly shown down to the consulting room.

It was good news.  Very very early this morning my GP had received a call from the specialist I’d seen in January.  She was very apologetic that I’d been left out of the loop – although still insistent that I didn’t have a follow up appointment booked and nothing available until the end of March.  She was concerned that the disease had advanced and suggested I should be fast-tracked into the hospital system of urgent referrals for dermatology specialists.  However apparently she is also aware that this isn’t going to be immediate!  So my poor GP spent a while on the phone learning about the disease.  A page with handwritten notes (lots of them) and some very complicated instructions about what they’d do for me right now to control the spread of the disease and hopefully reverse the effects so far… but it’s not going to be an easy 10 days ahead.

I had further examinations, swabs taken but no biopsies at this point.

I was asked if I was prepared to be part of an unauthorised trial.  That sounds a lot worse than it is but essentially the specialist (and her colleagues) had struck upon a combination of drugs that seemed to work when administered in this way for the oral disease… however it’s unproven and might be questioned.  Absolutely I’m happy to participate – medicine can only move forward with trials.  After all penicillin and many other things we use today were discovered by mistake or chance.

My GP told me that we’re going to hit it hard by throwing everything we’ve got at it for a short period of time.  We’re going to nuke the disease!  She’s going to find out the blood test results and has also put in an urgent referral to the hospital dermatology specialists.

20 minutes later I left and headed off to the pharmacy to collect a bulging carrier bag of medicine (and I’ve still got to go back tomorrow morning as they’ve not got 3 of the prescriptions I need in stock!).

The pharmacist did query with me the ‘trial’ drugs.  They were concerned that they’d been mis-prescribed but when I explained it, they were happy to help.

So over the next 10 days I’m going to be ‘nuking’ my body with a vast array of medicines in tablet, cream, ointment and liquid format.  There are a number of potential side affects of the drugs I’m not looking forward to but hell it’ll be worth it if it works… and the potential side effects may not be a problem for me.

What did I learn today?

  • Too not give in and to pursue appointments
  • To mention ALL symptoms as they may actually be related to one illness
  • It’s worth having an annual NHS Prescription Prepayment Card (PPC) http://www.nhsbsa.nhs.uk/1127.aspx  After only today’s pharmacy visit and the many prescriptions required, I’ve already saved!
  • To thank people in healthcare.  Often situations like yesterday aren’t their fault but perhaps due to misunderstanding
  • You can’t have an ‘urgent’ referral to a GP dermatology specialist – it has to be in a hospital setting.

So here goes… wish me luck!

4 thoughts on “Update on my rant

  1. Good luck Anna you certainly need some with all that you are going through. I wish you well and hope the drugs find a solution to your problem. You are a very brave lady xxxx lol

    Sent from my iPhone

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