Only 2 days to go until our appointment at Great Ormond Street – can’t come quick enough 2

After a week of unbelievable interest from the press in our story – culminating in a page 5 splash in today’s Sunday Mirror – today I am back down to earth with a bump. Several bumps actually, as despite finally getting him to take his anti-biotics last week, Zac has had a few new ones come up on his elbow!

Tom and I were gutted. After days and days of strong anti-biotics the open wound had started to heal and then just as we changed his dressing before bed, we noticed some new spots. They always start small, a bit like a chicken pox blister and then the suddenly quadruple in size until they burst and start leaking blood streaked pus. So now I am counting down the minutes until our appointment at Great Ormond Street. By Tuesday I fear his new spots will be at oozing point, so at least we will have something to show the doctor!

I am just desperate for answers. How on earth has he got new ones when the anti-biotics had healed the existing one? Or is it just time that healed the other one and the anti-biotics are having no effect whatsoever. I don’t know. But I will ask. I have so many questions to ask. I just hope I can get all my questions answered in our forty five minute meeting. More than anything I hope he will refer us back into the NHS for testing, as the tests I fear Zac will need costs hundreds of pounds.

We could of course, wait until January – as we now have (I think) got an appointment through for the Luton and Dunstable hospital. I received two letters from them last week. The letter saying we have an appointment in January arrived the day after the letter saying our appointment had been rejected, so I am sure anyone could understand that I am not actually sure if we have an appointment or not. I did call my GP surgery and they were not able to check it on their system as it had been made ‘manually’ after the last referral/rejection and we were no longer on the Choose and Book system. More chaos.

You can see why we have given up and decided to find the £300 for our private appointment on Tuesday. In my opinion, these contradictory letters seem to prove that the left hand does not know what the right is doing in our local healthcare authority. It is worrying and just not good enough. By constantly cancelling and rearranging appointments, it delays Zac actually being seen, we keep going to the bottom of the waiting list. Just another way to keep those referrals down and keep money in the NHS pockets.

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