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Emma

Age at interview: 25
Brief Outline: Logan is two years old and has complex medical needs: before birth he was diagnosed with Ventricular Septal Defect and muscle build up in artery (recently repaired). He also had surgery to repaired cleft lip and palate and is receiving ongoing care. Diagnosed at birth with asymmetrical chest wall; torticollis with sternomastoid tumour, glue ear and sleep apnea. Jaimie is 6 months old, and has Down’s syndrome and was diagnosed before birth with ventriculomegaly with hypoplasia corpus callosum. Emma feels that flu-like illness is a relatively smaller issue in comparison to her children’s other conditions.
Background: Emma is the mother of two small children and a home maker. Her husband is an RAF logistics driver. Ethnicity: White British.

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Emma and her husband have two children, both with complex medical needs. Logan is 2 years old, and before birth he was diagnosed with Ventricular Septal Defect and muscle build up in artery (recently repaired). He also had surgery to repaired cleft lip and palate and he is receiving ongoing care. Diagnosed at birth with asymmetrical chest wall; torticollis with sternomastoid tumour, glue ear and sleep apnea. Jaimie is 6 months old, and has Down’s syndrome and was diagnosed before birth with ventriculomegaly with hypoplasia corpus callosum. 

Logan and Jaimie are closely monitored by multiple health specialists. Both have physiotherapy and Logan has speech therapy and his sister is due to start hers in a couple of months. 

Emma is not worried about flu-like illness affecting her children’s underlying health conditions. Rather, she thinks that it is their complex medical needs that make them more vulnerable to getting the flu. Generally, she finds that flu-like illness is a relatively minor problem compared to their more serious conditions. Jaimie hasn’t been ill with flu-like illness, but Logan has been ill with it a couple of times. Usually, his mood changes and he develops a temperature. Emma and her husband monitor him closely and make sure he drinks enough water. They also use Calpol and Neurofen to try and bring down his temperature. They would consider calling the doctor if Logan’s temperature increase, but flu-like illness hasn’t affected him badly. 

On average, Logan and Jaimie are seeing specialist doctors once a week, and Emma feels that she can raise any flu-related concerns at these hospital appointments. Emma is very happy with the hospital care her children receive, but she thinks that there is room for improvement in terms of practical arrangement. Emma would be grateful if the hospital could schedule multiple appointments on the same day. Travel to hospital takes her a long time and hospital parking costs are expensive.

Emma feels cautious about giving antibiotics to her children because she is worried about antibiotic resistance. Logan has been prescribed antibiotics for ear infections on a couple of occasions and she has noted that GPs leave it up to her to decide whether to get the antibiotic prescription or not. She hadn’t considered the preventive use of antibiotics in flu-like illness, but her attitude would be to research it first before making a decision about it. 

Emma complements the medical information given by health professionals with online research. She search for information on NHS Direct, participates in online forums, and look at Facebook pages relevant to her children’s conditions. She is interested to read the other parents’ post about their experiences. Emma has found many positive case studies on online forums from parents who also have children with multiple disabilities. 

Emma is very satisfied with the specialist doctors and midwives that have cared for her children. But there have been occasions in which other health professionals not directly involved with their care like a GPs or health visitors have not read their medical history or, considered their underlying conditions when recommending treatment. 

Since Emma’s husband is in the military, the family moves area every year and a half. The family has experienced problems with delays in children’s hospital referrals and the transfer of their medical files. Emma keeps a copy of their medical records in case they need medical care before their health care is sorted out. She feels she has lots of social and practical support from her family and other people in the military community.

Emma’s advice to parents is to listen to the doctors, but she would urge them to do their own research because doctors ‘don’t always know everything’.
 

Logan has had flu-like illness twice, it started with a high temperature and vomiting. His symptoms worsened within a day or two of starting to feel ‘out of sorts.’

Logan has had flu-like illness twice, it started with a high temperature and vomiting. His symptoms worsened within a day or two of starting to feel ‘out of sorts.’

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Yeah so when Logan has had flu in the past the first sign is that he’s just not himself. He’s a lot more grizzly than he usually is et cetera. He tends to get quite a high temperature so and that’s obvious that come with the grizzly and etcetera. And then he’s normally sick and that’s when I know he’s really, really ill cos he doesn’t get sick very often. With that he doesn’t want to eat his food. He doesn’t want to drink sometimes. He won’t have his favourite foods and he’s just generally not himself. Yeah so we just monitor him basically and, [noise] and make sure.

And do the symptoms develop very quickly one after the other or is it a gradual kind of process?

Normally a day or two when it goes from him being out of sorts. I think [hnnn] something might be up yeah, to full on being sick and needing a cuddle and a duvet on the sofa. Yeah I’d say a day or two.

Ok and does his temperature rise or?

Yes the temperature thing both times that he’s had the flu it’s risen to the levels where you’re checking it every 5 minutes just to make sure it doesn’t go up just that little bit further cos that’s when you know you need to, to ring the doctor or something. So they normally get to the point where if they get any further up you need to worry but yeah we tend to strip him off and try and cool him down and get his temperature back down but they do definitely rise.
 

Logan has complex needs and it took him two weeks to fully recover from flu-like illness and be back to his old self.

Logan has complex needs and it took him two weeks to fully recover from flu-like illness and be back to his old self.

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So how long does it take for, sort of when he, after he has had the flu for him to, for the symptoms to settle down, for him to become sort of

Back to normal?

Back to normal again.

I’d say normally a week to two weeks the whole thing lasts and then we get back to our normal routine. I think they normally last about a week in terms of sickness and things like that. After that it’s a case of him gradually eating a little bit more, him wanting to drink a little bit more, him wanting to do things and being his happy self again. Stop being as grizzly as he was, that kind of thing. But I’d say two weeks for him to fully recover, get back to his old self and be laughing and running around like a crazy fool.
 

Emma was annoyed that her GP didn’t appear to be listening the first time she consulted with her daughter (who has Down’s Syndrome). At a second appointment the GP was much better (and so avoided getting a written complaint).

Emma was annoyed that her GP didn’t appear to be listening the first time she consulted with her daughter (who has Down’s Syndrome). At a second appointment the GP was much better (and so avoided getting a written complaint).

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My GP we did have one negative experience to begin with and that was the first time I took Jaimies in when she had a cold when she was quite, quite newborn. First of all she thought that Jaimies was Logan (my son). I appreciate that Jaimies is a unisex name and she’s a girl so you’d automatically go to the boy and assume that was that but in my head it should have, her notes should have been there. And then when I corrected her and said, “This is Jaimies.” Even though she was in bright pink and fluffy clothes she still kept referring to her as him. So I wasn’t happy to begin with. Even after I corrected her it was still him, him, him. So I wasn’t happy. She wasn’t listening. but the reason I went to the doctor was because she had a bit of a cold and I was worried about her oxygen levels cos like I think I mentioned when she was a couple of days old on the High Dependency her oxygen levels dropped. She had to be put on, she had to go on a nasal oxygen thingy and they never explained it. They did loads of different tests, loads of things for infection and all that kind of thing and they couldn’t figure out what it was. So they just put it down to a newborn blip but told me to be wary that actually they hadn’t really explained what happened and just keep an eye on her I guess. So we got a sensor pad and all that kind of stuff just to monitor a little bit more closely than you would the normal newborn. So when she got this cold and she was struggling to breathe and she was waking up in the middle of the night gasping for air because she couldn’t …, her oesophagus and everything was quite closed I guess. I took her to the doctor’s in the hope that they would do a Sats test and just see what her Sats were running at. The doctor told me that Sats don’t mean anything and there’s no point in doing that anyway. So I tried to explain why I wanted her Sats done and why I just needed that piece of mind as to, you know, because her Sats had gone down and because she needed to go on oxygen and it wasn’t ever explained. This was only obviously a few weeks later. And she was adamant that she didn’t need it done. They won’t tell her anything and she looks fine. It’s just a cold. It was only after I left the doctor’s appointment and when I came back I think two days later because I had an appointment scheduled for Logan I came back with Jaimies. This was Logan’s first time for meeting the GP as well she was asking me all about Logan’s health conditions etc. and I slipped in to conversations somewhere about Jaimies’s health conditions and she asked me what health conditions Jaimies has had. So I told her she’s got Downs Syndrome, she’s got ventricular megoly etc, etc. and she said, “Oh I didn’t realise.” Even though two days before or I think it was two days, two days before I’d explained every single reason why I wanted her to have this Sats test done and she totally wasn’t listening to me. She hadn’t pulled up her medical record at all. She had no idea of, of the ventricular megoly or anything like that and she told me, I didn’t need it and I wasn’t allowed to have her Sats done because she’s fine even though she had no idea of her medical history. And that really, really annoyed me because it might not have been fine but she was too lazy to check because the average baby didn’t need their Sats done. And she kind of seemed a little bit sorry then and I do but it was obvious to me that she wasn’t listening to a word I was saying in the, in the first appointment. I did write a complaint letter that I was going to hand in the two days later when I went to see the doctor. 

When I turned up for the appointment I realised it was with the same doctor so instead of handing the letter in that I had under the pram I waited and I thought I’ll wait. Excuse me I’ll wait and see how this appointment goes and then during that appointment when she realised that she’s got loads of health issues, he’s got loads of health issues she really listened. She really took everything on board. She said she’ll do this and she’ll send this referral etc. etc. So I gained a little bit more faith in her at that appointment so I decided not to hand in that 3 page complaint letter that I’d written into the doctor’s surgery and wait and see how it goes. 
 

Emma uses the Internet to find information and says she’s learnt more from other parent’s experiences than talking to health professionals.

Emma uses the Internet to find information and says she’s learnt more from other parent’s experiences than talking to health professionals.

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And in terms of information you mentioned that sort of the consultant that you see, that they haven’t given you specific information about how to deal with the flu or flu-like illness.

Yeah. 

No?

No there is nothing specific that I can remember anyway them saying when your child has the flu you should do this, you should do that, etc. etc. but I do tend to get a lot of information just online myself. Obviously with two children with a lot of health conditions I do quite a lot of research myself. So when things like the flu or any illnesses do occur I’m straight on the internet and finding out as much as I can about it, learning how to manage, at what point should I be calling the doctor, things like that. So 

Do you remember the sites you visit or?

Quite a few really. I, I finish [blah, blah, blah] visit NHS Direct quite a lot cos there’s some really useful information on there. But then I also go onto forums where other people, NetMums and things like that. There are Facebook pages that are quite relevant to the children’s conditions specifically so Families of Ocean Ward which is a ward that he stayed on when he had his heart surgery. There’s a lot of information. There’s a lot of people commenting there saying, has this ever happened to your child and then loads of people send their experiences in. There’s a page for my daughter Jaimie’s who’s got partial absent corpus calosum in the brain. There’s a page on there where different parents chat about experiences and has your child ever done this or suffered with this or what do I do in this scenario? Is this related to her illness et cetera? Yeah even, even his cleft lip there’s a page just for, for cleft lip parents. And I’ve learnt quite a lot of information just from other people’s experiences as well.

How useful has it been to you, how helpful has it been gathering all this information?

Really useful, more, more useful than the doctors and professionals really because I find doc, a lot of doctors and professionals tend to have a sort of one, one thing fits all kind of mentality whereas gaining other people’s experiences in different. You know I’d rather speak to somebody or a hundred people who have been through the same thing and get all of their experiences than a doctor who’s read it in a book and maybe not come across that specific scenario before. 
 

Logan has not been severely affected by flu-like illness. It changes the dynamics of their family and their daily routines for a couple of days.

Logan has not been severely affected by flu-like illness. It changes the dynamics of their family and their daily routines for a couple of days.

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The flu again in my head because of all of the serious conditions that they have and because we’re back and forth to the hospital the flu isn’t really a big deal in this household. So it doesn’t really have a big impact on the family because it’s just an illness. It might mean we don’t go to the toddler group that we go to every week or we don’t go to this place, we don’t go to that place. We’re quite, we’re quite a laid back family – I think that you have to be. We don’t have strict routines or anything like that. They, they go to bed around 7 o’clock but we don’t have that if you’re not in bed by 7 o’clock. We don’t have a specific tea time we have tea around that time each day. I think for families who maybe do have a strict routine you have to do this at this time, you have to do that, you have to do that. It might be more difficult but life changes every day here every single day. He found out last week he’s off to Cyprus for four months next week. Just gets thrown upon us. So the flu is, it’s not a big deal here.
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