Asthma – the cold fear inside

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I lay next to her as she slept in my bed, and listened to her breathing. The rash was up again; her beautiful face was covered in puffy, red patches, that were spreading down her neck and shoulders as I watched under the torchlight. It hadn’t been there at bedtime, and yet when I checked on her at 11pm she was covered. I had dragged her from sleep to administer anti-histamine, brought her to my bed so I would know if she worsened. She has asthma, you see, my baby girl. What if this sudden – and very dramatic – allergic  reaction happened in her lungs as well?

In the Doctor’s waiting room the next morning I scanned Facebook. A friend had shared a story of a mother trying to raise awareness of asthma, a sudden attack of which had claimed her 5 year old boy a few months before. I want to change this, I thought, and friended the mother, so I could help her spread the word of her campaign. But it was too raw. I read her posts in the night, as I waited for the steroids to take effect, for the panic to be over. In the end, I’m ashamed to say that I ignored her posts, running away from the fear they struck into my heart.

My daughter was due to go away on her first school camp. For the first time she would have to manage her own inhalers. Amongst her peers, she would need to speak up if she was worried about her health. No teacher was going to lie by her side at night and check that she didn’t wheeze.

She must have picked up on my worries. As I kissed her goodnight on day 2 of this flare-up, she whispered: “Will I wake up Mummy? If I have an asthma attack, will I know? Will you hear me?” I kissed away her tears, and reassured her, with a strength in my voice that I did not feel. Yes, I would hear, she would wake, we would know. Wouldn’t we..?

We were lucky; the rash subsided, her teacher kept an eye on her, and she had a whale of a time water-zorbing and abseiling with her friends. But the management of asthma in schools is complicated, and not all schools have a policy of keeping children’s medication to hand. Asthma UK, the UK’s leading asthma charity, want to overhaul the system with their Inhalers in Schools campaign.

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Background on the Inhalers in Schools campaign

  • There are over 1 million children with asthma in the UK, that’s 1 in 11 children and there are, on average, 2 children in every classroom with asthma.
  • Every single day there are 84 children admitted to hospital for emergency treatment for asthma and the equivalent of a classroom of children die because of asthma every year.
  • It is currently illegal for schools to have an emergency spare inhaler to use in the event of a potentially life-threatening asthma attack.

 

Why is this so important?

My daughter’s asthma has been well-controlled for many years, but high levels of tree pollen this Spring have seen the onset of hayfever. This in turn has brought on asthma symptoms, and this has been the case for many children over the last few months. The recent high levels of pollution made life even more difficult for asthma sufferers, and environmental triggers are constantly in flux. If you’re not convinced yet, the following stats make very scary reading:

  • 79% of children and 88% of parents said they were concerned about the possibility of an asthma attack at school.
  • Asthma UK also found that one fifth of children (21%) said that they would say nothing and just hope for the best if they thought they might be having an asthma attack at school.

Paul and Karen Linton who tragically lost their son Sam to asthma, after he died at school, are supportive of the campaign. Sam would be 18 years old this year had he not passed away in 2007. Karen adds: “No parent should have to go through what myself and Paul have been through. It is simply unacceptable that schools are not allowed to keep a spare emergency inhaler in their first aid kits. I can’t urge parents strongly enough to make their voices heard on this issue. Please, please respond to this consultation so we can change the law and keep children with asthma safe in schools.”

What you can do.

  • The government have recently announced a public consultation on spare emergency inhalers in schools. Inhalers that could be used to help a child in the event of an unexpected asthma episode, and even save a life.
  • Please visit the Asthma UK page and complete the consultation response. Every response will highlight how important this issue is to children with asthma, and their parents. But please click now – you only have until 30 May to make this difference.

The Asthma UK Helpline offers independent advice about asthma for anyone worried or who would like to talk confidentially to a specialist asthma nurse. It is open weekdays from 9am to 5pm on 0800 121 62 44.

 

 

 

52 thoughts on “Asthma – the cold fear inside”

  1. Asthma terrifies me. My husband has it and it’s therefore likely that my girls will also have it. As someone who doesn’t it’s really scary to be the one to watch, to feel helpless on the outside not fully understanding or comprehending what’s happening. It’s hard to reassure when you have no experience yourself.

    Thank you for writing this, it’s reminded me that I need to educate myself about it a bit more. Also that I need to send the husband round to boots to get his new inhalers that he keeps forgetting about… xx

    Reply
    • Thanks for commenting Steff. This is the problem with so many sufferers – they don’t take it seriously enough, because they feel well, which is why when they’re taken by surprise, complications kick in. Good luck with your girls – they may escape it. We had hayfever and eczema in my family growing up, but never asthma, until my nephew, and now my daughter. Just watch them, but try not to worry.
      Please do head over to the consultation response form on Asthma UK though x

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  2. This is shocking. We have been given inhalers for our children when they have had breathing difficulties, yet not diagnosed with asthma. Our youngest has had the worst of it and I feel so much more in control knowing that we have the inhalers on hand just in case things get bad again. We’ve had friends use them when they have been caught short as well, deliveries to friends with children having asthma attacks in the night finding themselves without. I have been told that inhalers are not harmful when used appropriately. So WHY would a school not have one. Especially when they would have to be prepared for a diabetic reaction.

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  3. Oh thank goodness she was ok in the end. This is one of those things in life that many people, like me, only think about when they know someone it happens to. It’s wonderful you are sharing this x

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  4. I ha a asthma and I remember very well the misery I went through as a child before I finally had a diagnosis and an inhaler and mine wasn’t dangerous. My daughter often had breathing difficulties as a baby and one night turned blue because she couldn’t breathe. That was one of the scariest nights of my life and it was only due to the quick response of the ambulance that she is still here. I am neurotic about her inhalers and breathing and I don’t care, Asthma is a killer and a lot of people don’t realise that.

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    • Thanks for sharing Nikki. GG was admitted several times as a baby for nebulisers, because her breathing was so bad you could see her skin drawing in between her ribs as she laboured to breathe. It was terrifying. But it took 8 admissions and a lot of steroids before she was finally diagnosed and given inhalers, and during those 2 years we were on pins every time she got the tiniest sniffle. It’s those undiagnosed children who are most at risk, and there are so many, because our system takes a cautious path with treatment. That’s not necessarily wrong, but in the meantime there needs to be an emergency back-up.

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  5. my husband and i are asthmatic but so far the kids aren’t. it does worry me they will develop it at some point. all schools should have inhalers in their first aid box – they are small to store, straight forward to use. no excuses not to have them.

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    • Thank you for your comment. It is such a terrifying illness, and I think the point is that it doesn’t need to be, if everyone knows the facts, and how to manage it. I think that’s what Cristin is campaigning for.

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  6. Completely agree with all schools holding spare inhalers. It shouldn’t have taken this long!!
    British Red Cross have a baby and child first aid app which shows first aid for asthma if more people know what to do it will help children when they aren’t with their parents. I urge everyone to download it.

    Thanks for raising awareness with your blog.
    Off to sign the consultation now.
    Gx

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  7. Oh Helen, how terrifying! G had her first A&E referral at 6 months because of her breathing. At 1 and a half, 4 courses of oral steroids later, she was put on daily inhalers and montelukast salts. This past winter it has been the first with no crazy rushes to hospital, so I’m hoping her lungs are getting stronger. That said, with her anaphylactic allergies and asthma, we’re forever ‘on the watch’. Her hayfever and eczema was also hideous this spring and we’ve been on daily steroids for that. Even in her face! I wasn’t aware that schools don’t have inhalers. Her nursery does, and her epi-pen, so why can’t the schools do too? She starts pre-school next year and reading this post has me terrified. Hope asthma uk makes waves fast on this campaign. Hope GG’s lungs will get stronger each year. Much love to you both xx

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    • Ah it’s so stressful. Your story sounds much like ours. We were actually in the process of reducing GG’s steroid inhaler dose, as with age her viral asthma was virtually non-existant. So it was a shock to have a resurgence of symptoms as she developed hayfever in the last couple of years. That’s the problem with allergies – they’re constantly changing in individuals, and so difficult to predict. I think hormones play a part too. Good luck with G’s allergies x

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  8. Well done to you for raising awareness about the importance of inhalers in schools. So sorry to read Cristin’s story, will be heading over now to complete the Consultation Response.

    Congratulations on being a finalist in the Writer & Video categories, so well-deserved!

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    • Thanks so much Izzie – I’m totally blown away to be in the mix with such incredible bloggers. And so glad to have a platform to publicise things like this x

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  9. It’s a very emotive subject, we don’t have any asthma sufferers in our household so i guess I look at it very differently. I agree that children should keep a spare inhaler of their own in school to allow for these emergencies, but I’m not sure about a spare for everyone to use – cross infection of weakened lungs if it’s not cleaned properly between uses for one! I think most importantly is staff training – an inhaler in the hands of someone inexperienced is worse than useless! Training all school staff to recognise the signs of asthma, and other childhood complaints that ca present like asthma is vital – and I say this as someone who has worked in schools with people who have no idea what they’re doing! We should feel that our babies are safe in the hands of the people we leave them with!

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    • Totally agree Mary, basic asthma first aid training is crucial, and yes, that should include hygiene around inhalers. I’m guessing an update to the standard consent forms would be part of the overhaul, so that parents have the option to give or withold permission to use an emergency inhaler in the event of a concern.

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  10. I have asthma and so does my son. We have inhalers at home, in the car, in our bags and, supposedly, at school but sometimes the school ones disappear. This campaign is excellent and I’m sure it will improve the lives of children with asthma. I’m glad GG’s school trip went well.

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    • Thanks Gretta. Our school is pretty diligent about keeping meds handy, but even then, the children who don’t yet have a diagnosis are at risk.

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  11. Currently my sons inhaler isn’t kept with him at school, not even in the same room. It does concern me how long it would take to get to in an emergency. Makes me glad he has 1:1 support.

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  12. I find schools to be the worst place for children with allergies/asthma. When the eldest was in kindergarten, I explained to her teacher, that my daughter was very allergic to cats. Well she didn’t believe me, and let cats in the classroom for show & tell. My daughter, puffed right up, had an asthma attack, and the teacher actually said “I didn’t believe you”. I am pretty sure I yelled at her.

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    • I think this is part of the problem Catherine. Some allergies are mild, some people with no experience don’t believe they could be life-threatening. Those who don’t know don’t take it seriously. I know I’ve been guilty of sending my kids into school with snacks that contain egg or sesame, without really thinking. That’s why the awareness needs to be so much higher.

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  13. That has just had me in tears. Hubs suffered horribly with asthma as a child, but fortunately environmental triggers changed and he’s only had one asthma attack as an adult. However I’m very aware that my children could develop asthma, so this blog post has really worried me – I had no idea this was the current situation, but it doesn’t surprise that kids wouldn’t speak up at school. Thank you for flagging this up, I’ll be sharing this x

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    • Oh I’m sorry I didn’t want to scare anyone. So many people live with asthma comfortably, and with no scary attacks, but I think it’s because they take it seriously and pay attention to their sypmptoms. Our school carries inhalers for the children who have been diagnosed and have a prescription, and GG is old enough (and scared enough now) to know when to speak up. But I agree, I can see lots of kids not wanting to cause a fuss. It needs to be a much more talked about problem, in the same way food allergies are high profile in schools.

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  14. Gosh Helen I’m so glad GG is alright, asthma can be really scary. Worse if you panic but if you can’t breathe properly you panic. We have asthma in our family, my brother was a cronic asthmatic and JD and I have it albeit mildly now. Swapped it for hayfever! POD’s chances of getting asthma are high but I’m hoping she ‘just’ has eczema (eczema, asthma and hayfever are all in the same family). Really shocked about some schools not allowing children to have medication so a great campaign and of course wonderfully written. Huge congrats on the BiB’s, really chuffed for you x

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    • Thanks Charly. I think lots of schools have the inhalers of children who are already prescribed medication, but it’s illegal for them to carry a spare in the first aid box as standard, for use by children who don’t have inhalers of their own in school. I can understand the trepidation, but with training, it’s such an innocuous medicine, that could save a life in an unexpected situation. It just seems daft not to have one in every first aid kit as standard.

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  15. Asthma has to be one of the most underrated illnesses I know. Poor GG – and poor you, it must be so scary. Thankfully I only have mild asthma. A good school friend of mine died at the age of 28 from an asthma attack – ever since I have much more awareness. She had a mild attack and asked her husband to take her to the hospital. They went with her 18 month old son in the back. Just before they got there, Sam stopped breathing. She suffered major brain damage. I saw her on the Thursday and she died on the Sunday. I had never expected to see so many people from school again at a funeral. So sad 🙁 So sorry to read about Karen and Paul and Cristin’s stories. Thank you for raising awareness on this very important subject xx

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    • The more I learn Victoria, the more terrified I become. I’m so glad for all these comments though – it’s made me more determined than ever to make Asthma research the charity focus I support.

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  16. Asthma is so scary, my husband has it and so does my brother-in-law and nephew. I’ve seen all 3 hospitalised by it. My eldest is in school and he brought a letter home in September to say all asthma sufferers needed 4 named inhalers in school at all times. 1 for in the classroom static 1st aid box, 1 for in the classroom mobile 1st aid box, 1 to be kept in the school reception inhaler box and 1 to be kept in the dinner helpers 1st box. Although he doesn’t have asthma I thought this was excellent as any sufferer would always have an inhaler in close proximity having seen my nephew at his worst. I was surprised to see parents of asthma sufferers moaning at the teachers they’d need to go to the doctors for a prescription rather than thanking them. The school also has a trained asthma ‘teacher’ if the attack gets really bad who will accompany a child to hospital as well if needs be.

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  17. So frightening. My eldest has asthma and I once picked her up from school in the middle of her having a full blown attack – she was 6 and they’d left her there to administer her own inhaler and hadn’t checked on her at all. We went straight to the hospital and I was so angry no-one had understood how serious it had been. She shouldn’t have been left alone. I understand your fear, it’s very scary. Wonderful that you’re doing your best to raise awareness – all staff in schools need to be fully trained. Hope you’re all ok, congrats for being a finalist in the BiBs!!!

    Reply
    • Thank you. Gosh that’s an awful experience. I think where there is an asthma sufferer amongst the teaching staff there is probably a good practice, but definitely too many people brush it off as not a big deal. Which often it isn’t, but you can’t take that chance.

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  18. This is frightening. I am lucky in that none of my children use inhalers (as yet anyway.) I always carry an inhaler wherever I go, and get panicky without it. I tend to get wheezy at random times, so there is no predictability with it – might only be twice a year, but it is terrifying when it happens – I absolutely agree that there should be spare inhalers for children in schools. As an aside, I used to work in a school, and did First Aid. When the nurse was showing me around the medical office she pointed out the children’s individual medication drawers, with inhalers and what-not in them for the children who needed them. These were named and personalised. My first reaction was “Well, if they came in having an attack, would it be OK to grab the first inhaler I could get my hands on?” The answer, was no. Although I did push and say “But you would though wouldn’t you.” She nodded. Thankfully I was never put in that situation. It’s just such common sense for there to be spare ones in schools, nurseries, play groups – anywhere where you have lots of children or people.

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    • Hi Kerrie, it sounds like that school had a great policy. It would just be nice for everything to be a little easier for schools x

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  19. This worries me too, I think asthma can be brushed aside sometimes and people don’t understand the seriousness of the condition. I suffered with asthma as a child (only have it mildly now) and had all my attacks in primary school – luckily I was ok and carried my own inhaler. The one time I didn’t have my inhaler the teacher recognised what was happening and got me to the doctors immediately! Darcie has suffered with it a little too but I think its very mild luckily – still worries me though!

    Kay x

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  20. I read this post from my phone the other day,and it made me soooo cross! My son suffers from Asthma. I don’t have to worry about it when he is at school here however, as they have a dedicated nurse. A dedicated nurse who at the beginning of each year we give extra inhalers and other necessary medicine such as antihistamines should they so need it. These are all locked away in a huge cupboard and taken out when necessary. I don’t see what is so hard about that. You don’t even need to have a nurse in a school environment, just a key kept with a member of staff, surely? Asthma is not something to be taken lightly. My friend lost her older brother after an attack, and I have spent several nights in hospital with my son when he has been bad…. Thanks for highlighting this important issue, I hope they see the light soon and change this policy. Helen xx

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    • I’m stunned Emma by how many people have come forward after this post to say they have been so badly affected. It makes me more determined than ever to do something about it. Sounds like your school have it sorted!

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  21. My ex had Asthma, so attacks are something I became well aware of. They’re really scary at times, even just for the person watching. I DO think that schools should carry spare inhalers. It harms no-one.

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  22. It’s good that you’re raising awareness like this Helen – it’s shocking that schools are forced to be so basically irresponsible. I can’t imagine your terror as a mother having to let GG go like that. Best of luck with this campaign. Will share xx

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  23. How awful. I can’t believe schools don’t have inhalers as standard and I really hope the law on this changes soon. Also staff need training. So many children have asthma these days that it would be suitable for everyone to have.

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  24. I am so glad she is ok my love. I cannot begin to imagine what you have all been through. Well done for raising awareness of this issue and best of luck with the campaign. Let me know if there is anything I can do to support xx

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    • Thank you. I plan to do a lot more to support research on Asthma. I’ve previously been all about Cancer Research, but that is always so high profile, and asthma is just as scary for those who have to deal with it x

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  25. Such an important campaign Helen. I know a couple of families badly affected by Asthma, it’s just not taken seriously enough. It must be so hard being apart from GG like that, so glad she was ok and had such a great time xxx

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  26. Yes I agree with children having inhalers at school labelled with names, but do worry about cross infection, if the school has an emergency inhaler, as children with asthma tend to have a weakened immune system so that would put them at risk of all types of germs and bugs, which could be dangerous,
    If a child has diagnosed Asthma, they should use their own inhalers and parents should hold the responsibility of making sure that inhaler is working .

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    • Agreed, and this may well be why it’s not currently legal. However, I do think that could be overcome with proper training and procedure for use.

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  27. Does anyone know the reason of why it’s illegal for schools to keep inhalers?

    I can imagine the schools/local government making it against the RULES to keep them – with our ever-growing “compensation culture” I can see them just trying to protect themselves but I don’t quite understand why it’s against the law… anyone?

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    • I think you’re probably right, that there is a ‘blame’ culture element to this law. But it’s such an inoffensive medication that with proper administration procedures and training, it should be a no-brainer.

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  28. Hi Helen,
    Just wanted to thank you for spreading this message! I would love to be involved in any future projects to support Asthma UK.
    My cousin had mild asthma, and rarely used her inhaler. In 2001, she died, suddenly of an asthma attack, aged 10. I was 15 at the time. My family are huge supporters of the charity and I had never thought before that I could use my blog to raise awareness.
    Glad GG was ok and thanks again for this post. I’m sure it helped to make a difference x

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    • Thank you Amy, I’ll try and remember to keep you updated as and when more can be done. In the meantime you might like to follow @asthmauk for their updates.

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  29. Thank you for sharing, not having asthma or knowing anyone that does you forget how scary it really is for those affected!!

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