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.

We had seen GPs about Zac’s allergic skin reactions in August, September and October and I believe the constant cancellations were sending us to the bottom of the pile – hence the January appointment. Is it reasonable to expect someone to accept a ‘wait’ of almost five months for a discussion about such a severe allergic reaction? My argument has always been I cannot be sure what he is reacting to. His reactions are becoming more severe and I am starting to feel quite afraid of what could happen next. Until I met Dr Fox at Great Ormond Street, I felt like no-one could hear me or understand me. Coming away from the appointment with him I felt vindicated. My mothers instinct was right and he agreed that the tests should be carried out as soon as possible. That was Tuesday. ‘Our story’ appeared in the local press on Thursday evening.

By Thursday and again on Friday, I’d heard from Ms Dorries office with more assurances that they were investigating the hospital and I emailed them the full details of our private appointment. Then I received a phone call from the hospital. They were calling to let me know that Zac’s appointment had been changed, had I received the letter? Strangely, the post had just dropped on the mat, so I kept the lady on the line as I opened it. It said that Zac’s appointment had been changed from Wednesday 2nd January 2013 at 9.45am to Wednesday 2nd January 2013 at 11.30am! I asked how on earth that was an improvement – that letter makes no sense – and she said I had been sent the wrong letter, again!

She was not sure how or why that one was sent out but she had been calling to check I had received the appointment for Wednesday 5th December. She assured me that another letter had gone in the post and I would probably receive it in a few days. Politely I asked for her name and phone number. She was very pleasant and very apologetic. I told her that I had no confidence that this appointment existed and would not be cancelled soon. She said she understood my frustration and gave me permission to call her directly even the day before to confirm that we would be seen. She also seemed to know a lot about our case. I asked if we were seeing an allergy specialist or gastro specialist or a paediatrician. She told me it was a lady who was all of these things. She really tried to reassure me that Zac would be assessed from an allergy point of view. I am not sure if she had read the local paper, or had been contacted by Ms Dorries office, or even Dr Fox? He said he knew the specialists at Luton and Dunstable and when we met, he gave me the name of the person he wanted Zac to see for his blood tests and further appointments.

I will probably never know for sure how our appointment was brought forward by a month and how a waiting list suddenly disappeared, but all I know is that by shouting loud and often and nagging my MPs office via the press, and complaining about our hospital to anyone who would listen, I have what I should have had a very long time ago – an NHS (free) appointment where Zac’s allergies will be discussed and treated. Now all I want to know is – will anyone give me the money back for the private hospital appointment which seems to have been a catalyst here? Surely, what we have had to cannot be the only way you can get seen these days? I sincerely hope not, but if anyone else out there has had similar problems to us, all I can say is nag and nag and complain and talk to anyone who will listen and don’t be afraid to make a real pain of yourself, because nagging works!!! And if you are looking for some support, I am more than happy to make a nuisance of myself again on someone else’s behalf.


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