…something happens that shows you that it really doesn’t pay to be complacent, especially when it comes to children with complex medical needs.  The reason for my most recent angst? The whole ‘flu vaccination thing! Yes, you probably read my blog post over a month ago, where I discussed the decision process we were going through regarding M and the ‘flu jab, and almost definitely concluded by the end that everything was set firmly in place.  Having visited our new GP, I certainly felt that we had agreed what was best suited to M’s needs and was now just waiting for the confirmation phone-call and a date for my diary.

You’ll have guessed by now that it hasn’t been that easy and whilst that doesn’t come as any surprise to me when it concerns my youngest, the complexities of getting the situation sorted came at a time when, to be perfectly honest, I really didn’t need the added aggravation.  It all started when I phoned the surgery to book the appointment.  The receptionist needed to discuss which clinic to book M into because he was having the injection and not the nasal spray and so referred him on to the practice nurse, with a promise she’d call me back.  10 days and 3 phone-calls later, I was still waiting for the practice nurse to confirm which clinic M needed to attend.  Oh, and there was the added problem – or so I was told – that there wasn’t enough child vaccines in our health centre, so we would have to wait for those to arrive before I could make a definite appointment.

This is definitely a t-shirt us #EGID parents need!

The string of events that followed are like the plot of a bad 1980s sitcom as we got bounced from one local medical establishment to the next.  The first problem was that the no egg vaccine is not licensed for use in under-18s and so the nurse wasn’t happy to give it to M, especially as he’s never had the vaccination before.  She was keen to discuss the situation further with one of our local hospitals and so I agreed to wait.  Next, I had a message telling me that the hospital would give M the injection, so that he could be monitored and could I confirm that I was happy for my contact details to be passed onto the appropriate administrator to arrange that appointment.  Needless to say, I confirmed as soon as I could and then sat waiting for the next installment in this latest saga.

Three days later, a copy letter arrived in the post from the community paediatrician, who has met M once, knows very little about him and just confirmed that he could have the ‘flu vaccination unless Mike and I knew of any reasons why he shouldn’t have it.  Er, no – after all, we’re the ones requesting he be given the damned thing.  A week after that, another phone-call from our local health centre, advising me that the local hospital won’t give M the injection because his 2009 blood tests didn’t show any sign of an egg allergy.  WHAT?!

Now, don’t get me wrong, M does not suffer an anaphylactic reaction to egg, rather a delayed non-IGE one, so I can understand that they don’t think it necessary to be monitoring him on the ward; but blood tests from 5 years ago are hardly a good basis for any medical decisions made in my opinion.  In the 5 years since those blood tests were carried out, he has been treated by GOSH, had a diagnosis of EGID and we have established that he struggles with several food allergies that, because of the very nature of his reactions, will never show up in the standard blood tests.

The next part of the conversation however, really took the biscuit for me, though I don’t blame the poor receptionist tasked with phoning me to make the relevant arrangements:

“As his blood tests were negative, the hospital have said he can have the ‘flu vaccine here, so I can book him into this Saturday’s clinic for the nasal spray.”

“Um, no he can’t have the nasal spray because of his egg allergy and the nature of his underlying chronic illness.”

“Oh, well the hospital said he could have it as he doesn’t suffer an anaphylactic reaction, so they want him to have the nasal spray here.”

“Well,” – (a somewhat hysterical tone starts to creep into my voice) – “Great Ormond Street have said he needs to have the injection, so I think we’ll follow their advice as they understand his medical needs.”

“Right, so you want him to have the injection?” – (she’s now slightly perplexed) – “Well, I’ll have to check which clinic I need to book him into.  I’ll call you back.”

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Have you ever felt like you’re going in circles?  Five weeks on from my original GP appointment and I was right back where I started and M still hadn’t had the ‘flu vaccine. I was even beginning to question just how important it is for him to have it, given he hasn’t had it before, but GOSH had recommended it as a good idea for him and I wasn’t prepared to give up at the first hurdle.  Fortunately, the receptionist was as good as her word, has booked him in for appointment after school one day next week and has left a note on the system for the nurse at that clinic to review his medical history before he has the injection.  Of course, I’m trying not to panic that she might take one look at his notes and refuse to give it to him, but at least we’re making steps in the right direction at long last.