An update is long overdue – from me and from the hospital 4

Apologies for having been ‘off air’ for so long. It has been a month and a half since I last updated the blog and in that time so ‘little’ has happened. The cooking adventures have continued and I will be posting some new recipes later in the week. Zac has had an up and down time health wise and I will also post on that. But the thing that has irritated me the most is that I have very little to share in terms of our progress with getting answers and satisfactory treatment. I have been waiting and waiting to post some results but I just can’t wait any longer so here is the update as of today.

On the 5th December 2012, we finally met our NHS consultant at the Luton and Dunstable Hospital Paediatric Gastroenterology and Allergy Clinic. This was after having been first referred in September(after much pleading and a very bad allergic reaction), having had our appointments repeatedly rejected, writing to my MP, getting our story in the national press and on TV and finally getting the clinic to call and apologise and magic up an appointment for December. Oh and we had also just met Dr Adam Fox at his private clinic at Great Ormond Street Hospital. He had confirmed that Zac should be tested for multiple allergies and wrote to my GPs advising them to manage our ongoing care, arrange blood tests and work with the Allergy clinic at the Luton and Dunstable.

So as you can imagine we were very excited on the 5th to be meeting a person that Dr Fox had mentioned by name and personally recommended. I had my letter from him with me as I felt the quickest way to get our story across was for her to read his analysis of our case. Since Zac was a baby I have described his symptoms and issues in detail to 4 different consultants and every GP at our surgery and frankly I am tired of hearing my own voice, so thought it better to ‘let him do the talking’. Dr Ashworth is a Paediatric Allergy specialist and is very familiar with Dr Fox and his work, she even calls him by his first name, so was happy to read the letter and get straight down to business. She agreed with his take on our case and agreed to arrange the blood tests he advised.

She also examined Zac. Dr Fox and Dr Ashworth are the only people who have ever even laid hands on him, so this reassured me also. She noted that his abdomen did seem quite distended and she noticed that he was a bit croupy. Good basic examination technique in my opinion. She said she felt that he could start with Nalcrom straight away. This was a drug that Dr Fox had also mentioned. She thought it might help with the tummy bloating. She said she would arrange for us to see a dietician at the Luton and Dunstable Hospital and she would see him again in three months. Since then she has written a letter to me and my GP detailing her findings.

A week later I had to take Zac for his blood tests. He’d had a flu jab the week before and had suddenly developed a fear of needles. He had not had a jab since he was a baby and I think it was a bit of a shock to him. He never even noticed them as a little one, but the older he has got the more wary he has become of doctors. Little wonder!

I had been given some numbing cream and plasters to put on the inside of his elbows and the backs of his hands, as he would be having a lot of blood taken, as they were testing for so many things. I explained to him what we were doing and he seemed ok. Then they called us. He took one look at the two nurses and instantly started to panic. They sat me in a large dentist type chair and I had to sit him on my lap in a ‘hold’. As they peeled off the cream it was apparent he’d had an allergic reaction to the plaster and the cream. They even commented on it and said, ‘I can see why he is here!’

In my head, I was thinking ‘See – all you GPs and consultants who dismissed him, my son is allergic to so many things and you just didn’t care enough to help us find out the extent of it’. Just ten minutes of this plaster on him left him with a perfect scarlet ‘print’ of the plaster on his arm. He was crying as soon as they removed the plaster and I just wanted to run away but I knew they just had to do it so held him tight. He is very strong and I needed one of the nurses to help me hold him still while the other one took his blood, four vials. He was hysterical. Once she was finished the poor little chap started to calm down and then we had to tell him we had to take some more from the other arm. It took all my strength to hold him still. It took even more strength not to cry. To feel your child struggling against you as you hold him down while someone sticks a needle in his very sore skin is something that is very hard to take.

By the time we were finished Zac was covered in a measles-like rash. The nurse noted that it could have been his anxiety or a reaction to the latex in the gloves as she had her hands on his skin for a long time as we held him. Great! Another possible allergy to add to our list. I took him into the corridor to cool down and waited another fifteen minutes just in case he really started to react to the gloves. Thought it best to stay on hospital grounds for a bit longer – just in case. But he was fine and we went home.

So here we are, a month later and every time the postman comes I run to the door. Nothing. I have had several letters that got my hopes up when I saw the hospital postmarks though. We got our appointment to see the Paediatric Dietitan for Wednesday 20th MARCH!!! We also got an appointment to see Dr Ashworth again for Wednesday 12th JUNE!!! I am not sure how June is 3 months after December – in her letter to us she definitely said she would see him again in three months. So I need to chase this. Perhaps they have given us this date because that is how long it will take the blood test results to come through! At Northampton it took us three months to get his blood test results so perhaps that is just the norm these days.

Yesterday I decided to call my surgery. Just to see if they had been sent there first. As is typical of them, they had no idea what I was talking about and said I need to ring the consultant directly. So I called the number on my letter. The lady I spoke to said she could see that there were ‘some results’ through. ‘Quite a lot actually’, I asked if that was all of them. She said she didn’t know and couldn’t give me anything over the phone anyway. She said she would leave a message for Dr Ashworth and ask her to write to me with the results asap. So that is it. The results are ‘in’ but who knows when we will have them. And what happens when I get them? Do I just carry this piece of paper around until June before we get to discuss them? I hoped, perhaps foolishly, that once we had blood tests there would be a pretty immediate follow up appointment to discuss the results and work out our action plan.

It is starting to feel that I may have to try and scrape around again to raise some funds to go back to Dr Fox. In fact, I have just sold a few bits of old clothes on eBay. So with a bit more effort on my part, I might be able to manage it. But should it come to this? I am selling my children’s old clothes in order to raise the funds to have him seen promptly and to have him treated properly. It appears so.

Just a few moments ago the post arrived and there were two letters addressed to the parent or guardian of Zac Neal. Both with a Bedford postmark. The first was from the Paediatric Outpatients at Bedford Hospital. We have an appointment to see a ‘new’ doctor (to us – the other guy was a locum apparently) booked for 22nd April. Not sure why they have sent us that letter. The previous doctor we saw there ‘discharged’ us as he said Zac appeared well and would probably grow out of it! I should call them and tell them we are now being seen at a different hospital – but as that appointment is April and the other is in June, part of me is tempted to keep it. But I do have a conscience and some other child might need that appointment and as we are now in the Luton and Dunstable ‘system’, it is only right to inform them. So please be assured I will do the right thing here.

The other letter was even more of a worry. Our GP surgery sent this one, inviting Zac for a flu jab. He had it – in December. At the surgery. So as you can imagine, I am pretty much at bursting point now. I know I have said this before but it seems so tragically and dangerously clear to me that the left hand does not know what the right is doing right the way through the NHS. How can my doctors surgery afford to waste money printing and posting letters before even checking on their system if a patient has had a jab or not?

How can Bedford Hospital have discharged us one year, yet their system has generated a new mystery appointment for us this year without us even asking for it? How can the Luton and Dunstable Hospital cancel my appointment so many times, finally give me one, agree to see us again in 3 months, then a few weeks later say that they will see us in six months. All that trouble and effort I went to involving my MP and the press in getting our appointment brought forward was for nothing. Today is 17th January. I have no blood test results and no follow up appointment booked until June 2013. I first asked to be referred to Luton and Dunstable in September 2012. Zac was first ill in 2008. He is due to start school in September 2013. The years are flying by and my little boy has still not been treated. I will have forms to fill in when he starts school with questions such as – does your child have allergies and if so what are they? How can I answer that? After four years – I still don’t know for sure!!!!!!

Perhaps I should write on the form, I suspect he is allergic to everything you can think of as he has had a variety of reactions since birth, yet we have no conclusive results or actions plans, so please be careful with him and call me if he has any problems!!!! The school would not feel very comfortable would they and neither do I. Remember this is allergy we are talking about – allergies can be very dangerous. Some of the results on that computer in Luton could indicate he needs an Epipen – yet until we have those results we are at risk of possible serious reactions to allergens we were not aware of.

In the last week, he has had more elbow blisters and a very distended and sore tummy. I don’t know what causes either, but I suspect we could work it out if we just had those test results. So I apologise for the rant but I had to get this down because I feel it is time to make some noise again. I intend to get back in touch with the press contacts who came to me during the Nadine Dorries episode because to me this is the story. Jawdropping incompetence and failings at every NHS touchpoint since Zac’s birth. And I know we are not the only ones. I just wonder if they will find this story so interesting – perhaps they are just so weary of NHS grumbles that it won’t even register. Let’s see…

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4 comments

  1. Oh Nicola I am crying reading this post! So many of the things you mention have happened to us and I suspect many other people. I feel for you in such a difficult situation. You are doing all you can and I know that if there is anything you think helps you do it straight away because you are such a loving mum.
    On a more constructive note I would be phoning the Dr Ashworths secretary and ask for an earlier appointment to discuss the results of Zacs tests. I agree completely that to wait that long before finding out if Zac hs an allergy is obsurd. I had to wait 6 week to find out the results of my blood tests for the gastroenterology consultant. This seemed long enough! My Doctors surgery were unable to discuss the blood test results as the hospital, rightly or wrongly, didn’t see that it was fit for a GP to interpret them.
    Have you been given Nalcrom and has it helped? Surely if this has been prescribed they can’t leave you to carry on using it unsupervised for an infinite amount of time? (no offense meant about your capability more that if a drug has been recommeded it is their duty to follow up its effectiveness).
    I would keep all the appointments you have been given. No one would think you don’t deserve them. You never know when someone will have even a glimmer of insight that may help Zac’s diagnosis.
    I wouldn’t rule out needing another private appointment but lets hope that you don’t and that you can keep that as a last resort.
    Also I would write exactly what your concerns are on Zacs school application. They must use you as the first point of contact in any trouble and you know mor than anyone or any doctor what he reacts to. Trust your instincts and stay strong.

    • Thanks Emma. Really appreciate the comment. Sorry to make you cry!?! But good to know my feelings are being communicated. If only the powers that be cared as much as you. I know you have been through some nightmares too and it makes me so mad when I read your latest struggles.
      Thanks for the tips. I will call his secretary again and see if we can arrange a swift follow up to discuss the results. We have not been able to get the Nalcrom yet as none of local pharmacies stock it.They offered to order it and call me – but guess what, not heard yet. I need to get on their case too. The fighting is so exhausting but we choice do we have! Best wishes and thanks again. Nicola x

  2. Hello Nicola. No wonder you are frustrated and angry – I think I would be in your situation! I know it would mean repeating things all over again but can you change your GP surgery? By the way, do you know a lady called Michelle Merrett who runs a company called Allergy Essex? She has a son who starts school this year I think and he also has multiple allergies. It might be worth having a chat with her to see how her treatment has been? By the way, I’m not sure I’ve got your email would you do me a favour and send me an email to Liz@lizallanconsulting,co.uk as I wanted to let you know about some changes going on with me too. Thanks, Liz x

    • Hi Liz. Thanks for your comments. I promise I will change my GP surgery. I have just been waiting for Zac’s results because I want to make a formal complaint. Once I have them, I will write to them and say ‘See, he has multiple allergies, that have been confirmed and since he was a baby every GP at this practise denied him a blood test to establish what his triggers are.’ etc etc. So as soon as I can do this, I will be leaving them. I just want to have something concrete to complain about.
      As for the Allergy Essex lady, I don’t know her, but will look her up. So thanks for the tip. I will be in touch with you on email and wish you all the best with everything. Appreciate the support and kind words. Nicola x

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