Appointment rejected – thanks NHS! 2

The long awaited letter came through. Addressed to Zac. I was so excited. The doctor we saw about two months ago had referred us to a new doctor at Luton and Dunstable and this must be the appointment. We had given up on Northampton, and then Bedford – well actually they both gave up on us and said just keep him gluten and dairy free for a few years and challenge him again then!

Anyway, the Choose and Book letter had come through within days of the GP agreeing to refer us, but when I called they said that there were no appointments showing but they would put us on a waiting list and it would be automatically generated. They told me to contact our GP if we had not had anything through after a month.

During that month Zac started to develop his spots that blistered so when we were at the surgery with those, I enquired about the appointment. The GP was very unhelpful and just said ‘that is for you to chase’. So I did. I was told we were on the list. Another month went by and the blisters turned to an abscess and I even took photos of his arm, so we had something to show the new doctor when the appointment finally came around.

I did notice on the Choose and Book letter that we had been referred to a dermatologist. I thought it was a bit weird because I had requested to see someone who was an allergy specialist, as his skin itching seemed to be related to food he had eaten. In my humble opinion the skin trouble was a secondary issue, but if he thought the dermatologist was the right person to see, who was I to argue?

Finally the letter arrived and I tore it open. Nothing could have prepared me for what it said. ‘Your appointment has been cancelled. Please contact your GP who made the referral for more information’. What?!?!? We didn’t even get an appointment. How could we have had one and not known and who cancelled it? Trying to control my rage I called our surgery and was put through to ‘the lady who deals with Choose and Book’. She explained that an appointment had been made for Zac, but the appointment was rejected by the person he had been referred to. I was staggered. I had no idea they could do that! I am used to being treated pretty shabbily by them when they meet us, but to be rejected before we they have even seen us seemed harsh to say the least. I asked the lady what happened next. She told me that the person who rejected Zac had written to the GP who referred us (a locum – so who knows where that letter has gone). He had advised that our GP refer us to a gut specialist, as he believed that this was not a Dermatology issue!!!! As I suspected.

So if a dermatologist who has never even met Zac thinks he should see an allergy specialist why did none of the other paediatricians and GP’s think so? Also, how long will it take before we get through? Are these all delaying tactics? We are now coming up the third anniversary of when Zac first got ill and we have been passed around like a hot potato and got precisely nowhere. Well that it not exactly true, because Zac has got worse. He went from being sick from drinking milk, to highly sensitive to all dairy and gluten containing products. He started to develop an asthma like night time cough and now regularly suffers with extremely irritated skin which causes him to claw at his face until it is marked, sometimes he has to take his clothes off because he is so irritated and most recently he had pus oozing from two holes in an elbow abscess. So obviously, this does not need further investigation – he is perfectly healthy and this is nothing to worry about? Right? WRONG!

We now only have two weeks to wait until I get to see Dr Adam Fox at Great Ormond Street Hospital – for the bargain price of almost £300. My son’s health is priceless to me and although we don’t have that kind of money readily available, we can find it. I just feel bad that he cannot get treated for free. I am sure Dr Fox will suggested a range of tests and they will cost even more and I am sure you will all forgive me for feeling rather hard done by over all this. The other week there was a little boy on The Food Hospital programme and he had only suffered a little bit of bloating and some stomach cramps and he got a gut biopsy, no question. Ok, so his Mum had recently been diagnosed with Coeliac Disease, but with our family history (that one doctor acknowledged contributed to Zac being ‘typically atopic’) – you would think anyone would say a few tests would be a good idea.

I know it is all down to money. He probably needs a lot of tests. He will probably be diagnosed as Coeliac and will be entitled to food on prescription. All the while they delay seeing him and testing him, they are keeping their money in their pockets and it is pouring out of mine. I think I spend about £20 a week on his special foods. The bread is almost £3 a loaf. Most of it is unusable and you can easily get through 3 or 4 a week, just trying to make his packed lunches for preschool. But as I said the money is not the issue. His health is and I will never forget the look of shock on my parents faces and the GP’s face when I showed them Zac’s oozing pus filled abscess on his elbow. He could have got blood poisoning, it could have required a lot of hospital treatment and then surely it would have cost the NHS more money than a few simple tests and a meeting with a specialist? But of course, I am not a medic. What do I know?!?!

 

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2 comments

  1. We didn’t even suspect Olivia had CD until she was diagnosed but as there was clearly something wrong , she has bloating, constipation, diahorrea etc I asked the GP for a referral for allergy testing as we suspected it may be down to a former dairy issue she had as a baby. The GP clearly said it would take an age to get an appt for this via NHS. Luckily I had private healthcare through work so we went privately. The CD test was a just in case thought by the pead as he too thought dairy most likely. Anyway bloods came back with clear markers so he then referred us to GOSH. It took 1 intro appt and then 1 day patient for the biopsy (it is truly awful seeing your little one go under) but the dr was able to say with some certainty after seeing her stomach lining even before the results came back, that she was a coeliac.

    I was lucky (although it took a lot of fighting with my healthcare insurers to get them to pay for the biopsy)

    You should hopefully see things move quicker now.

    I also had fun trying to get her ongoing care back on the NHS as no one wanted to approve the referral to the pead for her yearly check ups. Seriously no one seemed to understand that she needed ongoing care. Took me months to get it sorted but I had to involve the practice manager in the end.

    Good luck – be warned though to get the diagnosis you will need to stuff him full of wheat for 6 weeks at least. That is one of the hardest things I had to do

    Sent from a mobile device, please excuse any mistakes!

    • Thanks for the comment. It is always interesting to hear the experiences of others. It is so tough on the little ones – and the mummies – as you say, watching them go under must be awful, not to mention having to ‘poison them’ in the weeks running up to the test. I am very anxious about that as Zac only lasted 3 weeks last time and was so ill he ended up in hospital. They didn’t think it was connected though!!! So didn’t test anything.
      He was only 2 back then and so less fussy. Now he is nearly four and naturally very anxious about his food. He is aware that he has to have gluten free and dairy free food. I am not sure he would eat any food with gluten in. I guess I will just have to cross that bridge when we come to it. I hope your little one is well now. I am sorry you have had so many headaches with it all. A far too common story. Kind regards and best wishes.

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