Flu or Flu-like illness in chronically ill or disabled children
Messages to health professionals
The parents we met had had many different experiences of hospital doctors, nurses and GPs. The most important thing to them was being listened to and having their views and expertise as parents taken seriously. Parents said their children felt more at ease when they saw familiar faces and liked being remembered.
Naomi’s daughter feels more secure when she’s treated by nurses she’s met before and when there’s an informal atmosphere.
Naomi’s daughter feels more secure when she’s treated by nurses she’s met before and when there’s an informal atmosphere.
Oh really.
And came to say hallo and, which is so nice. And I think that’s, that familiarity is and it, it’s not formal there. They’re all really nice and they all laugh and joke and they’re gentle as well and they ask her about her life, and you know it’s all things like that really.
She does feel, if she doesn’t know someone she can be a little bit shy and so if she’s quite happy to have her blood tested and people to see her injections if you know her, but if you don’t know her she doesn’t, she doesn’t like it. And she won’t be vocal about something if she doesn’t know you, so that’s, that’s always good that, you know, there’s someone, and so they and they always come to introduce themselves when they change shifts so it would be another one, they’ll come in and say, “Hi I’m your nurse for the night.” Or, “I’m your nurse for today.” And more often than not when she’s in for sort of like two or three days she gets more or less a sort of, she will see that same nurse a couple of times. Obviously depending on their shifts but more often than not you do, she’ll see them both for the days and which is good, so that really helps.Karen appreciates the extra effort some doctors make to talk directly to her son and emphasises that if doctors listen to the parents they will get a better working relationship.
Karen appreciates the extra effort some doctors make to talk directly to her son and emphasises that if doctors listen to the parents they will get a better working relationship.
And any advice to health professionals?
Listen to parents. Listen to parents. I think it’s, I think it makes their job easier if they listen to parents. I mean I’m not that parents are always right and I’m sure they sometimes have to deal with some very difficult parents but I think it helps if the lines of communication are open both ways and you feel like you’re being received as well as, and involved. And I think in the same way as I try and involve my child in his illness it, it’s the same. Obviously the health professionals know more than I do but if, if I’m feeling involved then it helps me to do what they want me to do [ha] in terms of managing my child’s illness. And, and if you know why you are doing something it’s a whole lot easier to do it or deal with it even if it’s like we were saying earlier, antibiotics or steroids, you’re worried about it but you’re not going to take it and not give it to them because you know why you’re doing it cos you feel that you’re part of the process.Michael wants Ella’s health to be taken seriously when she gets ill and wants doctors to listen to him as a parent.
Michael wants Ella’s health to be taken seriously when she gets ill and wants doctors to listen to him as a parent.
Yeah. As I said before, I don't want to come across as though I know more than what doctors know, because I most certainly don't. But just listen to parents. Seriously. You know, at the end of the day, we're worried about our children, and are there, and that are poorly at the time. Yes, it might only seem like a cold, but as we've established, that somebody like Ella with quite a complex background, if it's not took seriously it can have serious consequences. So, you know, just be - just think back, that if you're a parent yourself, what would you want somebody to do with your child if you was in their situation? You'd want everything. You'd want them to be doing everything possible to make sure your child gets better as quick as possible.
Okay.
Just as much as you might have thirty years medical practice at the back of you, you know, just listen to what the parents have got to say because they live with that child 24/7.Sarah wonders why doctors don’t give parents up-to-date information about the child straight after a ward round.
Sarah wonders why doctors don’t give parents up-to-date information about the child straight after a ward round.
Okay.
So, the communication between - But then, I see - but then I justify it because they're busy, and they need to get round, and they need to do things, so maybe that's why they're not communicating straight away. But yeah. And again, I suppose it's for the parents to - sometimes I think the parents have enough to worry about, that they shouldn't have to be thinking about asking what's going on. Maybe the professionals should think 'Let's talk to the, to the parent, and actually tell them what's going on.'Anita would prefer doctors to refer to Oliver by his name in letters and notes instead of calling him ‘a Down’s boy’.
Anita would prefer doctors to refer to Oliver by his name in letters and notes instead of calling him ‘a Down’s boy’.
I think children, I think you should see the child before they see the diagnosis. That’s my biggest thing. Most times Oliver has not been called Oliver he’s been called a Down’s boy. He’s not a Down’s boy. He has Down’s syndrome. It doesn’t define him. He’s not. It’s a small part of who he is. Our biggest bug bear, you know. I’ve had letters from consultants again not used his name, ‘Today I saw a 2-year old Down’s boy’, and I’m like, no he’s not a Down’s boy, he is a child who has Down’s. There is a huge difference. And I think there’s, I think there’s a lot of people who do feel that way I think. There’s a lot of labels put on them and they don’t know, you know. Sometimes it’s easier to call them by a diagnosis but you wouldn’t say. You wouldn’t call him by another diagnosis if it was something else. They just see Down’s syndrome seems to be acceptable to say a “Down’s Syndrome”. They are not a Down’s Syndrome. Michelle knows that Jack’s condition is unusual but wishes doctors would use the right words to describe the features of his illness
Michelle knows that Jack’s condition is unusual but wishes doctors would use the right words to describe the features of his illness
Yeah, I would say [child noises] learn from your peers who not even like more knowledgeable and experienced but, you know, just listen and look at the bigger picture and look at your patient. Don’t look at a piece of paper, look at your patient, and treat your patient not a hospital number, not a diagnosis, treat your patient as a whole, not as a diagnosis. If that makes sense, because a lot of people, I mean, we’ve been in A&E and people have, because his condition’s so rare, and they’ve Googled it. And then come over and spoke to me about it, and they call them fits and it winds me up because they’re seizures [laughs]. And I think that’s it, just listen to, and listen to the parents… you know, and listen to other members of staff. Listen to each other. I think that’s a big massive thing, is just listen and take on board what everybody’s got to say. Show respect to everyone says Waj, even if they don’t speak English very well.
Show respect to everyone says Waj, even if they don’t speak English very well.
They should give them more training.
To the health professionals?
Yes. Yeah. Whether the receptionist in the hospital, whether the nurses, whether the doctor’s, they should give more training on how to deal with ethnic backgrounds and how to approach them or how to talk to them.
Do you think that the lack of training might have…
Something to do with…
…might have a negative effect on the patient’s care?
Yeah. If they do get more training or more to do with how to approach people doesn’t matter where, it would be a better place. And I think a lot of people would not feel unconfident and to come back and feel they would be more comfortable coming to talk to a doctor, whether they don’t have a translation or whether they do have translation. Probably, even the smallest English that they know they will be comfortable to communicate with the doctors.
It’s true. To be honest with you, whether you are a doctor, you’re a lawyer, you’re whatever you were, your profession should not be left to anybody. It should not make anybody feel they’re uncomfortable. Make them feel really small. So don’t look down to people, whether they speak English, they don’t speak English regardless of that. Everybody should be treated equally and have that respect, respect is very important thing.Mirella says parents also need a pat on the shoulder sometimes.
Mirella says parents also need a pat on the shoulder sometimes.
A bit of human?
Mm. The human touch yeah definitely yeah. Yeah.It was important to Harriet that the doctors told her Alfie had influenza which made her realise it was more serious than a cold.
It was important to Harriet that the doctors told her Alfie had influenza which made her realise it was more serious than a cold.
It is, and I do know that before but it was important that they told us that it was, that they made clear that it was more than a cold. Yeah. And they, and by calling it ‘Influenza B’ it made us realise that it was, it’s a, it is a, it’s something in and of itself which is different from it just being a common cold. And, and there’s something you don’t, I mean, you don’t get told at school, you don’t, or maybe you do it’s so long ago, you don’t remember, you don’t’ know these kinds of things unless you’ve got a background in medicine perhaps and I mean I knew as a joke that they’re different but I didn’t actually really know, you know, “Oh, they’ve got a cold”, or, “They think they’ve got flu”. You know, I understood that flu’s more serious but not, I still probably don’t really know why or how. And so although I know that it can develop into things that are much more, much nastier for children on treatment. So yeah, it was important they, they gave it that name and because it made us realise I suppose that it’s not something, it’s not just an everyday cold.Health professionals who care for Evie are amazing says Jo and they also take time to comfort her when she gets upset.
Health professionals who care for Evie are amazing says Jo and they also take time to comfort her when she gets upset.
Apart from thank you, you know, I realise how tough it must be. No I don’t know. I, they’re just amazing. They’re just, they know their stuff and it’s not just about the child and, you know, we know that. They’ve reassured. They’ve sat with me whilst I’ve been upset. They’ve, you know, it’s not just about the poorly child it’s about the family as well and they’ve. You know that’s a big thing. It means a lot. You have to be reassured. You have to, you know, you’re giving your precious, most precious thing over to these people that you don’t know. So yeah when they, when they come and they reassure you as well as a family, when they’ve got time for you as well as that sick child that means a great deal to the family. So thank you.
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