4 year old falling through the cracks in the NHS


I would love some advise on this issue. My 4 year old had his first asthma attack (completely out of the blue) 2 years ago so when he was 2 and a half. This was in the spring and doctors think hayfever may have set it off. He stayed two nights in hospital recovering, then was sent home with Salbutamol and Prednisolone for a further 3 days. At this point they called it ""sensitive air ways with a tendency for a persistent wheeze"" and we were told to take him to the GP for a review in 6-8 weeks. However, just a few weeks later he again had to go the A&E with a bad wheeze, got some more Prednisolone and was sent home the next day.

We were told to give him Salbutamol 3-4 puffs every morning and evening until a review could be done, now pushed back until October. We had the review and it was fine, no wheeze so was told it was all fine. November and December he was ill a lot with every flu and virus there was around, then January he had another attack and was treated at the hospital with a nebuliser. Got some more Prednisolone and sent home with no overnight stay. Then the same thing happened in February, this time he was treated with a nebuliser at the GP surgery because I took him there for an emergency appointment. We were sent to the A&E and he was admitted and spent the night there.

Finally we were given Clenil and he was put on 200mg 2 puffs twice a day by the pediatrician we saw there. Was told we should have him allergy tested to find his triggers. We had this done after much resistance from the NHS because of the cost and he is allergic to cats and grass. In March that year he had a further attack treated at the A&E before finally the Clenil kicked in properly and he was fine until November last year when he was 4 years old and woke us in the middle of the night gasping for breath and turning purple on the lips and ears. He was treated at home by the ambulance people and taken to hospital where they believed it was croup and a widespread wheeze. Was told his medication also needed a review and told to book a routine appointment with his GP. As our surgery is very busy this appointment was first week of February this year. His GP said his dose of Clenil was much too high and told us to give him 1 puff twice a day (still 200mg). Within 2-3 days the nighttime coughs returned and he started looking poorly, complaining of tiredness and wanted to be carried on the way home from nursery school (it's a 20 minute walk he used to skip or run). A few days later he started asking for his blue inhaler first thing in the morning and again at night and within 2 weeks we were giving him 3 puffs every morning, night and sometimes during the day.So I took him back to the surgery (different GP) and she put him back on the higher dose and wanted him referred to the pediatrics as he was NOT under pediatric care and didn't have an asthma plan or anything. This was something we had been fighting for for over a year but had been refused over and over again.

Now, 8 weeks on, we are still waiting to get his appointment for the pediatric team and he has developed a habit(?) of persistent throat clearing. I took him to the GP to ask why he was doing this and this GP wants him checked to see whether he actually has asthma or not, as he is struggling even with such a high dose of Clenil. He thinks, as my son always has a runny nose, that it could all be related to allergy and a runny nose and that he doesn't have asthma. I'm extremely confused now and frankly a bit fed up.

He has a younger brother (1 year old) that developed a persistent wheeze after a cold when he was 5-6 months old and he was instantly referred to pediatric care and has been taking Montelukast since he was 7 months old. He no longer has a wheeze because of it.

We have tried to get Montelukast so many times for my older son but nobody wants to give it out without a referral to the pediatricians and it seems nearly impossible to get an appointment with them.

Meanwhile he is struggling with tiredness, coughing and persistent ""flu"" symptoms and with the hayfever season coming around the corner I'm very concerned as he seems to be slipping between the cracks of the national health service. It's extremely difficult to get an appointment with the GP, if you want to see someone other than a locum doctor within 3 weeks, and the hospital is not being much more cooperative.

I don't understand how he can have had so many admissions to hospital with asthma attacks if he does not have asthma? We know he has recurring episodes of wheezing, and we know his triggers like cats and grass. Is it so difficult for everyone to get a diagnosis for a child in the UK? He has never been tested with a peak-flow meter or seen a pediatrician outside of A&E.

16 Replies

  • My son is 4 and has had an asthma diagnosis since he was 2.5 years old. It was only on his 3rd admission within a week the paediatric respiratory consultant happened to be on ward rounds that we finally got some answers. Currently he is on purple inhaler, yellow inhaler, nasal spray and the blue inhaler. He had his 3rd admission this year a week ago.

    Is he on the clenil 100 or 200 inhaler? If it's the 200 with 2 puffs twice a day that is a massive dose for a 4 year old. It's shocking that he is on that dose without paediatric consultant care.

    My son is currently taking seretide 125 (purple inhaler) 2 puffs twice a day and his paed resp consultant won't up this anymore and as he is still badly controlled he's been referred to St George's in London for a second opinion. When your son is discharged do they not arrange for follow up in outpatients?

  • He has never been seen in outpatients, no. Everything is left up to the GP and as I said, it takes up to 3-4 weeks to get an appointment there and you rarely get to see the same GP. I try to get him to see one doctor at the surgery that knows his history as she treated one attack, but she only works two days a week...

    Yes, it's the Clenil 200 and he takes a total of 4 puffs a day. This is the initial dose he was given after his third attack (when he was 3) and as he has never been seen by the pediatrician after that it has never been changed. Though they did try to change it and he got worse, so he was supposed to get Montelukast as that was the next step, but now they want to try a steroid nasal spray for 3 weeks to see if that improves anything.

    He's currently got some virus and is coughing/clearing his throat roughly every other minute. So I think we may end up going to the hospital at some point soon.

    I had no idea it was a high dose until last month when the GP told us. We have discussed the dose every time he's seen a doctor and no one has ever mentioned it being high before. Now I'm a bit worried about what long-term effects this could have for him.

  • If he does get admitted soon I would demand to see a Paedatric consultant with a special interest in allergies/respiratory problems there and then or at least on follow up in outpatients. Where is your local hospital? I would see if they have a website you can look up the paediatric consultants and if you aren't admitted soon or have no luck demand your GP refers you to that consultant. I can't believe what you are going through that is outrageous they are managing that at the GP that dose isn't recommended for children so it should be a specialist overseeing his care.

  • If he does get admitted soon I would demand to see a Paedatric consultant with a special interest in allergies/respiratory problems there and then or at least on follow up in outpatients. Where is your local hospital? I would see if they have a website you can look up the paediatric consultants and if you aren't admitted soon or have no luck demand your GP refers you to that consultant. I can't believe what you are going through that is outrageous they are managing that at the GP that dose isn't recommended for children so it should be a specialist overseeing his care.

    Thomas tried montelukast but unfortunately it wasn't suitable for him but seems to work well for a lot of children.

  • Ipswich hospital is our local one. Yes, I will certainly be more insistent and I spent most of Friday afternoon trying to chase the pediatric department for his referral. I will try again on Monday, it has taken way too long for them to see him.

    Montelukast has been excellent for our youngest, but he won't take the inhaler anyway. Just screams and wriggles, so that's the excuse they gave me when I asked for it for the eldest, ""but he will take the inhaler so he doesn't need anything else"".

    We have tried everything for him at home. Removed family pets, he has a air purifier, raised his mattress, antihistamines (4 different types even), no carpets on the floor... It's just then so ridiculous when something so basic as dosage has been wrong from the start.

  • Hopefully you will have some luck tomorrow with that referral.

  • Thanks. I hope so. Taking him there tomorrow for a chest xray and some bloods to rule out other causes of his symptoms. Will try and track someone down who can find his referral.

    How does everyone else find it listening for a wheeze in a small child? I find it really difficult to hear anything, then I can take him to the doctor and they say he has a bad wheeze. It makes it tricky to judge his condition. He doesn't tell me how he feels and has never slowed down much, in fact, the more salbutamol you give him the more hyper he will get!

  • Thomas very rarely has audible wheeze so we tend to rely on other respiratory distress signs such as intercostal recessions and tracheal tug.

  • Yes, that's what we look for as well. As with a grunting noise, but my eldest is extremely active even if he has an attack and it can be quite tricky to tell how bad it is, so a nurse suggested we got a finger pulse ox meter to check his reading. So we got one and use that to check, but they are not always so reliable with kids.

    Anyway, I have left another message for the pediatric secretaries so hoping to hear back about his appointment. I'm wondering about dropping his dose of Clenil already, if it's that high. I am a little unsure of what to do.

    I forgot to mention that last time I took him to the doctor, last week I think, the doctor went through all letters from the hospital and I happened to see that one of them said ""Urgent assessment of asthma required"". Another one said something like ""Patient needs to be assessed in clinic urgently"".

    We never heard of any of those messages. These letters were dated a year ago.

  • Your son sounds very similar to Thomas. He will happily run around until he is really ill and has to give in. I am terrified his nursery will miss an attack until too late and he is really bad. I don't have a finger pulse ox so have to base my decision for hospital if he is needing more than 10 puffs every 4 hours or if the 10 puffs hasn't made any difference.

    We usually get sent copies of any letters from the hospital, even if you weren't sent them that is unbelievable neither the hospital or your GP contacted you to arrange dates for follow up!

    I would probably keep him on the higher dose if it was Thomas until you see a specialist. You don't want to make him suffer more than he needs to. The specialist may change the inhaler to a different one to see if there is perhaps one that would work better for him?

  • Yes, he would run until he collapsed. Thankfully he's never collapsed so far, but I wouldn't be surprised if it happened. He goes to two nurseries as I work, a paid nursery in the morning and school nursery in the afternoon. The morning one is good, they will check him for wheezing and let me know. But the school one I've had so many arguments about their habit of letting a cat join their lesson and when I say ""but he's allergic to cats?"" they say ""oh, we didn't know"" (but they do, it's on his registration form as well) and then ""we will just let it in in the morning then when he's not here"". That doesn't really help. So because they are not reliable he's got a medical alert bracelet so I know there is no way they can claim they didn't know. I'm a bit concerned when he starts school in September as it's the same group of people as in nursery.

    We've never had copies of letters sent to us for him. We only have discharge letters and once we got one for asthma with the green, orange and red colours on it. It just lists his medication and plan for the next week. So yes, I was a bit annoyed to see that they had wanted to see him a year ago. I'm not sure who to blame, the doctors at the surgery or the hospital.

    Does your son take his nasal spray all year long? We got one but it's only for 3 months max.

  • Yeah he takes it every evening and has done for 2 years tbh I'm not sure it makes a massive difference for him as they haven't found any allergies but it's for post nasal drip.

  • How did you get on chasing the outpatients appointment?

  • I've called them every day now since Thursday and left a message on their answering phone. They never appear to actually answer the phone.

    He was at the hospital yesterday for bloods and xray (to rule out any other causes) so I'm not sure if they want to wait for the results, if so then it will be Monday before those are in.

    Meanwhile he's had a bad cough since Thursday/Friday so I'm just watching that at the moment. I've noticed some mild intercostal and also subcoastal retractions in the evening, but it's very tricky to see as he's quite skinny having lost some weight recently. But his ribs are more pronounced when he breathes at night anyway, and it seems to improve after 2-3 puffs of salbutamol.

  • Hi Dina84. My 5 yrs old's problems were similar to your son until I went to Italy (we are from there but living in Colchester) and took him to a peadiatrician.

    Long story but I want to reassure you that I'm pretty sure you'll find the solution with a right GP or try to insist about this. My son had several symptoms: clearing the throat all day long, coughing at night ,wheeze in several occasions and going to A&E. After being coughing every single day for nearly 3 months (a nightmare!) and being told several times by the GP that he was fine, chest clear,etc. I decided to go abroad. He was put on antihistamine and Seretide ( he was on clenil for 6 months but worked just for a short period) and was a miracle!!!! No more coughing, he can run, laugh, and play as a normal child. Since he started with antihistamine I've never heard him again clearing his throat and having a runny nose. Try to ask to be referred to an asthma clinic. The nurse there was the only person who said he really needs Seretide as the GP wanted him to stop using it and put him back on Clenil!. Good luck!

  • Hi,

    Sorry to hear you are going through such an awful time. It's so hard to have a poorly child, let alone having to fight for their right to appropriate treatment!!

    Is your GP adverse to referring to a paediatrician?? Did he have overnight stays in the hospital, and if so, can you call them and ask to speak to the consultant who discharged him asking for support with a referral??

    When my youngest daughter was initially referred I had a problem with our GP. I literally begged for her to be referred to paeds. His reply was coldly ""and what exactly for?!"". I then called the booking office at the hospital and said I was waiting for an appointment and cried to them on the phone!!!! She was seen the following week!!

    I often look back to that encounter with the GP....my daughter has severe brittle asthma, constant infections and has been on daily Presnisalone for 3 years now!!

    You sound like you are fighting hard. Keep going though. Keep going back and keep asking for help. As far as the clenil 200mg goes, I wouldn't worry for now about the dose being too high, Maddie was on that to begin with too.

    Have you tried antihistamines on top?? My eldest daughter has dreadful asthma symptoms if she misses a dose.

    Let us know how you get on. I hope things improve.

    Emily x

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