"A long sleepless night in excruciating pain."

I had been suffering from earache for a week and had been using drops for a week from pharmacy.  I’m in the extremely clinically vulnerable group as I’m highly immunosuppressed.

I had just had my infusion that lowers my immune system and within 48 hours my earache felt like I was having a stroke.  The pain is so severe I felt like I could pass out.  My ear was hot, and wet and the pain was radiating down to my jaw and my neck.  The skin in front of my ear on my cheek was completely numb and my head was about to explode.  I’m always advised by my doctors that if I think I have an infection to get medical help right away after a history of sepsis and opportunistic infection.

However, if it's not my usual GP then I have to phone NHS 24 and OOH. I feel like it could be made less stressful and a lot quicker. Every time I call I just feel like I’d be better rolling up in a ball and quietly dying in the corner. 

It was Saturday and I knew this infection was bad (I have 30 years experience of this by the way!)  So I called NHS 24 and waited about 40 mins on the line and got through to a nice call handler. They were efficient to be fair which was a first and delightful.  They spoke to a clinician and they said an OOH GP would call me back within 4 hours maximum.  5 hours later, I’m now in excruciating pain as I no longer have any prescription co-codomol left in my cupboard. (Paracetamol for this type of pain is like taking smarties). I am now running a fever and crying. I call back NHS24 and wait another 40 mins on the phone.

By the time the second call handler takes all my details and asks the same questions again I’ve now been waiting for a call back for 6 hours.  At this time pharmacies were still open and a simple electronic prescription to one of them for antibiotics and co-codomol would have taken 5 mins and I would have been more comfortable and jobs a good ‘un.  But no.

So the second call handler talks to another clinician for a long time and comes back to me and said that because my symptoms had gotten worse we’re going to get a different clinician to call you back.  In another 4 hours!! Yes thats right.  I’d have to wait another 4 hours even though my symptoms were worse and I’d already been waiting 6 without a call back as advised.  ‘Say what now??’ Another 4 hours?! To ‘maybe’ get called back.  This is the service of an immunocompromised patient with a severe and rapidly developing infection.

I expressed my disbelief and the call handler went back to the clinician for another 10 mins while my eyes watered with the pain.  They said that since I was not happy, they'd get someone to call me back within the hour.  Oh I see, so it's my fault for being ‘unhappy’.

I finally did get a call from a very jovial doctor from OOH.  No apology for not calling me back when they should have the first time.  I confirmed my symptoms (for the 5th time) and said they’d send a prescription for antibiotics to Sainsburys pharmacy which is now closed so I’ll have to let the infection spread and be in pain until the morning. I asked them for a prescription of co-codomal as this is what I have been previously prescribed and they said that I could buy my own at Sainsbury’s the 8/500 strength.  Charming.  I thought in Scotland prescriptions were free?  

I explained I normally get the stronger strength on prescription (they can easily check my records) and that I regularly take oxycodone for other pain but felt these were too strong to take for this type of pain.  Still they refused. You see, when you have been chronically ill with many complications for 30 years like I have you get to know what painkillers work best with what type of pain.  And the numb, earache and jaw pain radiating to my teeth and neck would have been made comfortable by  30/500 co-codomal.  Not 8/500 in a patient who is opiate with experience.  But what do I know?  They said I could see how I go and can always call back.  What?! Go through that ordeal and wait another 10 hours in pain while you call me back?  Great advice.  5 stars.   

I go now to enjoy a long sleepless night in excruciating pain.