A plea for help from one of your constituents
Dear Mrs Dorries,
I am writing to you because I feel I have a story you may be interested in and I would appreciate your help. I live in Flitwick and have a three year old son with food intolerance and allergies. He first got ill just before his first birthday in 2009 – he was suspected as having swine flu. It was during the height of the crisis and he wasn’t admitted to hospital or tested but a doctor at Luton and Dunstable A&E and one of our GP’s agreed that they thought it was likely. Thankfully he recovered, but three weeks of fever and stomach upsets had left him very weak. As he recovered, his appetite came back but then he started to be sick every night after dinner. I worked out that perhaps he was now lactose intolerant and took him back to our GP surgery, The Highlands, Flitwick. A GP there agreed and suggested we try a milk free diet and referred us to a dietician.
The milk free diet helped. He was no longer being sick but still had a ‘lively’ tummy and we were having far too many exploding nappies. I kept pressing my GP and health visitors. It took ages for the appointment with the dietician to come through. She advised us to get a referral as she felt that he needed to be properly tested. Over the next three years, we have been bounced around between paediatricians and dieticians, all of whom have showed little interest and just suggested I keep food diaries and try eliminating foods from his diet. He is now on a completely dairy free, wheat and gluten free diet. He looks a picture of health because I have take the trouble and great expense to become an expert in the ‘free from foods’ area and do all I can to keep him well.
Over a year ago we saw a paediatrician at Northampton General Hospital. He agreed Zac could have coeliac disease. He agreed to a blood test for him. I was told to feed Zac gluten containing foods for a month first. It made him so ill that he could hardly eat at all by the time the blood test came around. In fact he was admitted to Bedford hospital one day. He suddenly had a fever of over 40, was covered in a lacy rash and just fell asleep. They spent all day trying to test him as it looked like an infection. They couldn’t find one. I explained that I thought it was his immune system ‘giving out’ after weeks of me giving him food that made him. They agreed. Later he woke up and they sent us home.
It took 3 months for the test result to come back. I had to chase and chase and after many encounters with a very rude secretary, I made a complaint to the hospital. The paeditrician said that Zac’s result was negative (probably because he had not eaten enough gluten food) and he felt there was no need to see him. I tried to explain that he had not seen Zac since I introduced those foods and he was not aware it had caused Zac such a bad reaction that he was hospitalized. They were not interested and so we were discharged.
Months passed and Zac was back on a gluten free diet but still having unwell episodes. I tried again. My GP referred us to Bedford Hospital. The paediatrician there was equally uninterested. He just referred us to the dietician. Telling us to stay away from trigger foods and he would see him again when he was older as he suspected he would grow out of it.
To me it was and is obvious Zac probably has Coeliac disease. By not testing further, with a gut biopsy, these doctors are stopping us from having an answer. If Zac were to be tested I know it would cost the NHS a lot of money. He would also be entitled to food on prescription which would cost the NHS further. At the moment I spend about £20 a week on his special food and I cannot really afford it. The food is three times the price of normal food and of inferior quality. I believe my little boy is entitled to better care.
In recent months, Zac has developed an asthma like cough and skin itching. He experienced a very serious skin itching incident after eating a supposedly gluten and dairy free meal. He was literally clawing at his face. Such chronic reaction is truly ‘allergy’ not intolerance and I feel I need to know what his triggers are as it makes life difficult and potentially dangerous. Severe itching is only one step away from swelling and anaphylaxis.
So after the itching episode I took him back again to my GP and asked to be referred to another clinic and ideally an allergist, such as Dr Adam Fox. The (locum) GP said he knew a specialist at Luton and Dunstable who might be able to help. He agreed that Zac’s case needed further investigation. The Choose and Book letter came through quickly. I called and was told there were no appointments to book. I would have to wait and they would notify me. I was told to call if I hadn’t heard after a month.
During this month, Zac developed a spot on his elbow that turned into a blister. It caused him great discomfort and I took him to our GP surgery as it looked infected. He couldn’t stand to have clothes or anything or anyone go near it. The GP dismissed it as a virus. I asked it it could be connected with his intolerances and allergies, as skin blisters is a common condition associated with Coeliac disease. He said no.
In the following week the skin blisters gave birth to several others and after a week Zac was in screaming agony. His elbow was so swollen it looked like it might burst. I called for an emergency appointment. By then it was oozing pus from two holes. The GP – a different one – looked horrified. She said it was an abscess with a deep infection and she would have to squeeze as much pus out as possible asap. I had to hold him down while she put her whole weight on his elbow. He screamed the place down and I have to say it was one of the worst experiences of my life. The doctor in the previous week should have given him anti biotics. It was clear he had an infection and now he was in agony. He could have developed blood poisoning. I was furious and have complained. Not heard anything back yet.
All the while I still didn’t have my appointment. Then this week I got the letter. I opened it to discover that ‘our appointment had been cancelled’. I was not aware we had even had an appointment. I called our surgery and spoke to the Choose and Book person. She checked it out and discovered that the person Zac had been referred to had ‘rejected’ our appointment. I was furious and still am. I did not know you can refuse or reject a patient before even seeing them. She said he was a dermatologist and although Zac has been having skin trouble he feels he needs to go back to see a gut specialist. That is what I have been asking for for the last 3 years! So here we are almost 3 years to the day since he first got sick. He was got progressively worse. Not grown out of it as they all told me he would. I have no idea if he has Coeliac Disease, Crohns Disease, Cows Milk Allergy, Wheat allergy because he has never been tested. He exists on a very limited diet. He is healthy because I work hard to make sure he is. Please look at my blog http://www.feedingmyintolerantchild.com and you will see what I mean. We have been through a lot.
So in desperation I called Dr Adam Fox private clinic and got an appointment to see him at Great Ormond Street Hospital on November 13. It will cost us £300. We don’t have that money. We are having to put it on a credit card, but what choice do I have? My child is sick to the point where he cannot eat most foods and his skin is erupting in blisters, yet not one NHS doctor thinks his condition requires further testing. I know there are people with much worse problems than us, but undiagnosed Coeliac disease is thought to contribute to bowel cancer in later life. Not to mention chronic vitamin D deficiency which can lead to neurological conditions such as MS. So if we don’t find out what is wrong now, what lies ahead? Nothing good I fear. If, when we meet Dr Fox, he agrees that Zac requires further testing, it could cost us thousands of pounds that we don’t have. If he is discovered to have a condition that could have and should have been detected at some point in the last three years, I will be looking to take this case further and will want someone brought to account over this. I know it is all about saving money. I know that PCTs are incentivising GPs not to refer patients – and this is the result.
I am afraid I am one of the squeezed middle. I am university educated. Married with two children. I cannot get a job because it is not worth it. I used to earn over 45k before I had the children as a marketing professional. Marketing is not a 9 to 5 job and there is absolutely no provision for requiring part time or flexible working hours. I recently approached my old employers – Butlins about returning to work and they said no. They could not take anyone who cannot work 5 days and cannot give any more holiday than 20 days. I also said I could only do 9 to 5 because of dropping and collecting the children at school care club and they said that was not enough. I have no grandparents locally and have no way of having my children cared for in the school holidays. So at the age of 38 I have been ‘retired’ from a job I loved and worked hard at for many years. I could go back if I hired a nanny, but that would take over half my salary and I would never see my children, so what is the point? I did try and return when the children were babies. I calculated that it would cost me £500 a week in childcare, petrol and parking. I ‘only’ earned £700 – hardly a poor salary, but it still was not worth it.
So here we are, I cannot work. I cannot get free health care for my child and I think I should be entitled to both. Please can you let me know what you can do to help. As a working mother I know you understand the problem. I have done nothing wrong. I did all the things you are supposed to do – go to university, get a good job, get married, have the perfect number of children, pay my way in this world and yet I am wondering how on earth I can find the money to pay for my childs special food and medical bills.
I am sure you will agree this is all unacceptable. I know many are in the same situation but that does not mean we should accept it. As you know, the men who run this country can never understand what it is like to be me. They don’t need the NHS, they don’t need childcare, and to be honest none of them need to work for a living and so they do not understand what it means to those who do. I know you are different and thought you might like to bring my story to their attention. Please feel free to do so.
I look forward to hearing from you.