Son waiting over 2 years for his 'yearly' check up - any advice?

I've just found out that my sons yearly checkup with his gastro consultant has been cancelled and re-scheduled for Jan '18. That would be bad enough except his appointment (which was this week) had already been rescheduled after they cancelled his Sept '16 appointment. His last appointment was Sept'15 meaning my 6 year old son will have not been seen for 2yrs 4months, when NICE guidelines clearly state he should be seen yearly.

He is 6 years old and was diagnosed with coeliac disease when he was a toddler. He hasn't been tested at all since starting school (he's now in Y1). I spoke to the consultants secretary today but there are no earlier appointments!

Just wondered if anyone else was having similar experiences at the moment or if anyone had any advice.

Thanks

10 Replies

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  • Would suggest if YOU think it necessary for him to see the consultant for any reason, go back to your gp and voice your concerns to see if they can intervene.

  • The reason I want him to see a consultant is because that is what the NICE guidelines recommend.

    He is not unwell in himself, however he often has bloating and his vit D and iron have always been on the low side despite having supplements.

  • Liver once a week, lots of time outdoors. As for the bloating, try cutting out all grains and see how he does.

    I doubt very much that you'll get any other advice seeing a gastro.

  • So nobody thinks he should be having regular check ups, despite the fact it recommended in the NICE guidelines?

    I'm well aware of how to ensure he is getting plenty of iron / vit D.

    I was just a bit shocked that when he was first diagnosed I was told the importance of yearly check ups to make sure he is managing his condition, yet it now doesn't matter.

  • As a parent, we want the best and right treatment- but my experience of that seems rarely to happen within lots of departments in the nhs .

    You could try a letter to gastro dept outlining his ongoing 'problems' and that guidelines do recommend annual review.

  • I guess this is another example of the NHS struggling to meet all of its targets. Carry on being politely insistent and good luck.

  • Hi there, NICE guidelines keep changing and I used to have regular check ups with my consultant but now I'm supposed to have an annual blood test at my GP's. when I had check ups with the consultant I still got the results from my GP's surgery.

    So in answer to the importance of an annual check up it is very important especially at his age. I've just had a blood test at my GP's taken by a nurse with a follow up to discuss the results, my Dr told me off for not having a test for 3 years as the surgery had to ring me to invite me for the blood test.

    The reason that it is important is to ensure compliance with the diet by checking Iga levels plus iron,vitamin and mineral levels. And to flag up any other issues. This is especially important for a young child who is still growing for obvious reasons.

    So I'd request a full blood test at your sons GP practice in the meantime and don't be fobbed off.

  • Hi, I;m a mom with a celiac boy too. OK I've been on a long wellness journey with lots of experience with THESE types of specialists being overbooked. In the meantime, mind if I share the healing I eventually found after a horrendous experience with multiple surgeries etc.....Check these websites out as you will be so informed and helped. "Knowthecause.com" (watch as many of their previously aired TV shows as possible in their archives) and also look up their recipes. Plus look up the Dr. Young's Power Shake online.....I cannot recommend both of these strongly enough. Trust me, I've been thru a lot with this celiac thing. Those two sites are life savers. You WILL come away knowing MORE than what the doctors study in University. I guarantee it! Oh, one more thing too...the cookbook that I found on Amazon.com called "i can't believe it's Gluten free"....but the recipes on knowthecause.com are wonderful for this issue. On knowthecause you will learn what the root cause of most candida issues today. Super helpful!! You will have a new little boy!!

  • Hi, I'm a mom with a celiac boy too. OK I've been on a long wellness journey with lots of experience with THESE types of specialists being overbooked. In the meantime, mind if I share the healing I eventually found after a horrendous experience with multiple surgeries etc.....Check these websites out as you will be so informed and helped. Go online to Knowthecause.com (watch as many of their previously aired TV shows as possible in their archives) and also look up their recipes. Plus look up the Dr. Young's Power Shake online.....I cannot recommend both of these strongly enough. Trust me, I've been thru a lot with this celiac thing. Those two resources are life savers. Literally! You WILL come away knowing MORE than what the doctors study in University. I guarantee it! Oh, one more thing too...the cookbook that I found on Amazon.com called, I Can't Believe it's Gluten Free....but the recipes on knowthecause.com are wonderful for this issue. On knowthecause you will learn what the root cause of most candida issues are today. Super helpful!! Also escape cooking or baking with white rice flour and use the cookbook I mentioned or the recipes on knowthecause for more flavor and nutrition. Expected outcome of all of this? You will have a new little boy!!

  • Just to update, I spoke to the consultants secretary on Monday and contacted PALS yesterday. Both times I stated how my son had always received good quality care at the hospital however I felt the wait was unacceptable.

    I got a call this morning saying the had a cancellation tomorrow (the original date of his appointment) so they can see him in the morning.

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