Nagging works! A little bit of press, a few complaints and suddenly people are calling me and fixing this! Reply

What a difference a day (or 3) makes. Over the last couple of weeks our story has been picked up by ITV News, The Evening Standard, Five News, The Sunday Mirror and BBC Look East. I have pushed hard to ensure that my message gets across – Zac has been very poorly treated by the NHS, but obviously Ms Dorries was the main focus of these pieces. I was not intending to crucify our MP, but when she went in the jungle, I saw my opportunity to get the attention of the press and went for it. I am sure Ms Dorries, and any other driven and devoted mother would have done the same.

So after our successful private appointment confirmed by suspicions that Zac had allergies and should have been treated, I tweeted again and attracted a bit more attention. This week I have heard from the local newspapers, The Times and last but not least Ms Dorries office. I have had some very nice emails (considering some of my quotes) – and they have assured me that they have contacted the Luton and Dunstable Hospital about the rejected appointments and would have some answers for me soon. I was pleased with the progress, but sorry to have had to do this. Some of my less favourable quotes would have appeared in print after they called me with updates, so I could understand if they feel I have been overly critical – but I have been left with no choice. I am still determined to get Zac the treatment he needs and I don’t think I should pay for it.

I also think I am justified in bringing to my MP’s attention, that there are some serious issues at the Luton and Dunstable Hospital. They should never have rejected his appointment – without at least explaining why. It automatically put us to the bottom of the pile, despite the fact the referral had been made on the back of an undeniable allergic reaction – the instant chronic itching episode. NICE guidelines have been written and issued to doctors and specialists which make it clear that this kind of reaction is ‘allergic’ and not intolerant and is not to be ignored.

Since the first appointment rejection, I went back ‘into the system’ with a request to see a different specialist, in the hope that this one might see us. The rejection of that appointment came through (from The Appointments Line) on 5th November. I called my surgery immediately and the were ‘unable to see’ on their system what had happened. The very next day I received a letter from The Outpatients Department confirming our appointment for 2nd January 2013. I was still not happy. First, I didn’t feel confident that the appointment truly existed as clearly another system had automatically fired out a letter saying that it was cancelled. No-one I spoke to seemed to know if it was ‘on or off’. No matter what, it was not due until January and my child needed to be seen asap, so needless to say I decided to press on with our private consultation and take him to that on 13th November.

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Zac has allergies and needs to be tested asap – I knew it and GOSH confirmed it 10

This morning we had our private appointment at Great Ormond Street Hospital. As I suspected, we had a wonderful consultation and came away with some answers. The doctor was warm and friendly and seemed genuinely interested in Zac and his case. He even examined Zac – something not one doctor has ever done before. None of them had ever laid a finger on his tummy or looked at his skin.

I explained the whole story and he talked us through his thoughts and explained why Zac has had some of these incidents and symptoms. The basic conclusion is that it is almost certain that Zac does have several allergies – not intolerances – but ‘real’ allergies. We cannot be certain what they are without proper testing and so Zac will have some blood tests as soon as they can be arranged. He said it was important that we test him for everything, as everything we ‘know’ has been based on guess work so far and my ‘food diaries’ and elimination tests.

The doctor is quite certain Zac has an allergy to wheat rather than Coeliac disease, however he is going to screen for it in the blood tests, as he feels that everything needs to checked – and the symptoms can appear similar. He also feels that there is definitely an issue with cows milk protein and that needs to be looked at too.

He described three types of allergic reaction/allergic type people and Zac falls into the middle group where people have a relatively delayed reaction but it is most certainly an allergic reaction and not simply intolerance. He said the clue that Zac’s problem is wheat and not gluten is that in general he has so many classic symptoms of a child who is in the ‘allergic’ response.  In fact the episode that hospitalised him immediately after the Coeliac test was a big sign. He had eaten wheat containing foods for three weeks and his body had a massive allergic reaction hence the 40+ fever and rash. I knew it!!!

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The cost of Feeding My Intolerant Child 7

Today we were running low on ‘Zac foods’. Our local Tesco, seems to be stocking less and less in it’s Free From section at the moment and our Waitrose is not much better. Sainsbury’s has by far the widest stock on shelves and some brands I have not seen anywhere else. So despite sending Tom to the supermarket yesterday for a ‘big shop’, I still had to go today.

Here is the list of items I bought and how much they cost.

Natures Path Gluten Free ‘O’s – breakfast cereal £2.75

Doves Farm Gluten Free Stars – breakfast cereal £1.94

Free From Ciabatta – 2 x small bread rolls – £1.80

Free From Digestive biscuits – £1.50

Free From Chocolate Coins (for his Christmas stocking) – £1.49

Orgran Outback Animal biscuits – £2.99

Free From Rich Tea biscuits – £1.39

Small bag of Free From Pasta – £1.50

Dietary Specials Gluten Free breadsticks – £2.49

Alpro Creamy Peach Yoghurts pack of 2 pots – £1

Alpro Creamy Cherry Yoghurts pack of 2 pots – £1

Gluten Free/Dairy Free chocolate spread – £2.29

Free From Spaghetti – £1.50

Small loaf of Genius brown bread – £2.90

Free From White bread rolls pack of 2 – £0.63

So that is almost £30 spent on special foods. I know it looks like a lot of snack foods. He won’t consume these all in a week, remember not all stores stock everything, so I tend to load up when I see a bit of variety. I do limit his snacking but when you have a child who cannot eat dairy or gluten, snacking is tricky. Active 3 year olds are hungry a lot and need extra fuel – so I do let him have the odd biscuit.

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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.

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The latest – we are making progress! 2

So after a crazy few days of press interviews and Twitter flurries, I have finally made some progress. A friend told me that the MP for South West Bedfordshire, is very good and might be able to help. I contacted him as his constituency covers Dunstable and it was the Luton and Dunstable Hospital who most recently rejected an appointment for Zac.

The office of Andrew Selous MP responded extremely quickly. They said they would contact Nadine Dorries parliamentary office. I heard back from them soon after. They said they had not received my original email. I explained that I had gone on to her parliament webpage and used the email I found there.

Parliament webpage email

There are two email addresses – I chose the one for constituents, as I am one and this is a constituency issue – poor level of care from local GP, surgery and hospital. Perhaps I should have emailed both addresses and then I might have had more success. However, I am pretty sure she had left the country by Friday and wouldn’t have seen it if I had sent it to the other address. And even if she had, she will be in Australia for almost a month, so nothing is likely to happen for many weeks. More…