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Flu or Flu-like illness in chronically ill or disabled children

Advice to other parents

We asked parents what messages they would give to other parents of children with a long term medical condition or disability when their child has flu or flu-like illness. 

Parents advised other parents to know what’s normal for their child and to be proactive in responding to change or deterioration in their child’s symptoms. After eleven years of parenting her son with complex health needs, Michelle says, “If you feel that something’s not right then it probably isn’t right.” 

Parents gave the following advice:
  • Try, if possible, to maintain continuity of care by seeing the same GP and specialist nurse. 
  • Do not be afraid to get medical help early.
 

Nia thinks it’s beneficial to see the same doctor each time your child is ill.

Nia thinks it’s beneficial to see the same doctor each time your child is ill.

Age at interview: 27
Sex: Female
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Yeah I think if possible try and build up a relationship with a particular maybe doctor or if you have an asthma nurse, try, trying to see the same person wherever possible I think is very beneficial for children because you give them that familiar person then it doesn’t make them frightened, it gives them a bit of reassurance. But also I think it’s beneficial for a doctor, especially a GP to know that child’s history, to know what’s normal for them and what’s not normal for them because every child presents differently. So if you can build up a relationship and see the same doctor; it is difficult with the modern healthcare system to do that but if you can do that then I think that’s very beneficial. 
 

Maria says try to pick up on changes in your child’s symptoms early.

Maria says try to pick up on changes in your child’s symptoms early.

Age at interview: 48
Sex: Female
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Yeah I think, well just speaking as a parent I think that your child will be telling you by their body language and how they are, what, how bad it is to a degree. And be driven by, be driven by that as to what your action will be. And try to pick up on as much as you can on things early, and be ready in your mind for any eventuality or these eventualities because it’s so easily can go from a little bit of a cold to a full blown something else and you know then you’ve got to start worrying about how you’re going to control their condition.  But okay don’t take it for granted that your surgery will remind you when you need to have certain things that will help your child,  either not get these things or get them quite so badly.  I, I made that mistake I think.
  • If you are unsure or don’t understand something ask questions or seek another opinion.
  • Be assertive - don’t think you are wasting your doctor’s time when you ask for help.
  • You know your child best. Trust your instincts.
 

Jo’s advice is to ask questions so that you don’t go home and worry about your child.

Jo’s advice is to ask questions so that you don’t go home and worry about your child.

Age at interview: 38
Sex: Female
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When we were in the hospital with Evie for either bronchitis or leukaemia or whatever it was that we were in the hospital with Evie you have a doctor visit you every day. So that was always plenty of time to ask questions then and we always did. Yeah so as I say we were kept well-informed. So if there was anything at any time we wanted to know we would, and if our doctor had already been today so we weren’t going to see them again tomorrow we would make a note of it. Yeah which I would advise anybody to do. Doesn’t, you don’t want to sit worrying why they are going to administer this drug or what they’re, what the re-, you know, what the od- side effect can be of this drug. 

No I just. I think, you know, if you have a question ask it, because it’s not always thought of and a professional might not give you the answer to it because they haven’t realised that you need the, you know, that you want the answer but so if you think of a question ask it because you will, you will then get the answer. Don’t go home and worry, you know, why your child’s doing this or, you know, why they are going to give that medication or what the side effects are, ask.
 

Nia says be proactive and seek medical advice early. If you are not happy with your GPs advice get a second opinion from an out of hours service or walk in centre.

Nia says be proactive and seek medical advice early. If you are not happy with your GPs advice get a second opinion from an out of hours service or walk in centre.

Age at interview: 27
Sex: Female
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Or if you’re in any way concerned gain medical advice. But you know your child best. You’ve seen your child in the past, you know how they progress, how they deteriorate. Don’t be fobbed off. If you’re not happy with the first opinion gain a second opinion, you know if you’ve been to the GP and they say they’re all fine, you’re not happy then go to the walk-in centre or go to the out of hours because most doctors would rather you took a child in and actually there was nothing to do, than you to keep that child at home for them suddenly to be very very very unwell and have to be sent away in an ambulance.
  • Try to establish a good relationship with your doctor who will get to know you and your child when all is well.
  • If you suspect secondary infections or influenza: ask for tests. 
  • Pharmacists and nurses can give advice too.
 

Clare says to trust your instinct about how ill your child is and be insistent to make sure your child is not overlooked by health professionals.

Clare says to trust your instinct about how ill your child is and be insistent to make sure your child is not overlooked by health professionals.

Age at interview: 46
Sex: Female
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So, I don't think I've got anything to say specifically about how you manage your own child's illness. I think you, you have to be advised by your own instincts, and the, the knowledge of the people around you. But I would say definitely trust your instincts. And make a fuss if you need to. I think, I'm not the sort of person who's particularly happy with making a big fuss about things, but I will for my children. And on occasion that has been something really important that I've had to do for them. So definitely trust your instincts.

And when you say a fuss, was regarding Eliza?

Just, doctors and nurses are incredibly busy and very pressured people. And I would never be rude, but I would be insistent. And I would say "No, I really do think she needs to be looked at." And just make sure I stuck to my guns. As I say, not in a rude way. I don't think that's - you don't need to be rude. But, just given how much pressure people are under in the hospital situation, just making sure that you're not overlooked, and making sure you stick to your guns with things, and insisting on a few things [laughing]. I've done that on a couple of occasions.
 

Hazel says ‘be the strongest advocate for your child.’

Hazel says ‘be the strongest advocate for your child.’

Age at interview: 41
Sex: Female
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I would say you need to be the strongest advocate for your child. Don’t be afraid of questioning the medical profession. You’re the child’s expert. And just, you know, don’t worry, oh I shouldn’t go to the GP. I don’t want to bother them. Go to the GP if you need to. Trust your own instincts. And you know, you, well for us we have to really push for lots of different things to ensure that we get the best care. And you know, you have to put your child above anything else and anyone else. And but that’s ok, just to be ok with that not to feel, you know, being pushy or anything like that. It’s just, that is what you have to do.
  • Talk to other parents about how they manage flu-like illness.
  • Get the flu vaccine yourself so that you are well enough to look after your children.
  • It may get easier to look after your child as they get older.
  • Find out as much as you can about your child’s long term medical condition, use the internet.
  • Attend charity support group meeting/talks.
  • If your child is on a low dose of antibiotics every day talk to your doctor about whether a pro-biotic might help.  

Parents whose child had experienced many illness episodes wanted to reassure others that managing their child’s flu or flu-like illness will get easier to deal with as they learn how their child’s symptoms usually develop and the best way to manage them.
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