When a child with a long-term medical condition or disability gets a high temperature or starts to seem ill parents want to be able to consult health professionals quickly and get the right treatment. During an episode of flu or flu-like illness parents appreciated healthcare professionals who listened to them, trusted their knowledge and experience, and saw them as ‘experts’ in their child’s state of health.
Louise feels one hundred per cent involved in decision-making with her son’s consultant.
Louise feels one hundred per cent involved in decision-making with her son’s consultant.
Age at interview: 37
Sex: Female
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My, our consultant is a professor and he’s one of the top consultants in the field. And he tells me all the time, ‘you’re the expert’. The parent is the expert. We live with it 24/7. So a doctor or nurse, they do not understand, because they do not live with the condition. They haven’t got as much hours of experience as a parent or the actual person, you know, the patient. So really, they all the time tell us, tell us what you think. What do you think? They listen to us. And in the end you become your own kind of, you self-treat and you manage, you learn how to cope with different scenarios. Obviously, with, with the nuggets of information they’ve given you. But really we become our own doctors.
And do they consult with you if there is a sort of a change of treatment or if they want to do-
Yeah, consultant’s definitely is working together with me as the mum, the carer, you know, the primary carer.
So do you feel involved in decision making?
Yeah, 100%, yeah, yeah.
Hazel has learned to trust her instincts about Oscar’s health and advises health professionals to listen to parents.
Hazel has learned to trust her instincts about Oscar’s health and advises health professionals to listen to parents.
Age at interview: 41
Sex: Female
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And is there anything you would like to say to health professionals looking after these children?
I think communication is really important. Parents aren’t stupid most of the time and the. We just, we want to know what’s going on with our children and that there’s a plan and. No I mean just also incredibly grateful for the fantastic care that we’ve had. He’s a very, very complex child and I think we’ve been very lucky with the care that we’ve got.
Just still say I guess to listen to parents. You know they are the child’s experts. They’re unlikely to give you false information. So yeah I think it’s just really important to listen to the parents.
The other thing we experienced once that I’ll never forget is we did go to A&E once and he clearly had double ear infection because it was oozing out of his ears and we saw a quite junior doctor and he was just, “Well tell me about his genetics and tell me about this, that and the other.” And I was like, “No I just want antibiotics please. My son clearly has ear infection.” And Oscar is so unusual that people can get sort of very fixated on that, but he’s not. I mean ok you can learn from him. I get that but at the same time, you know, he’s not ‘show and tell’, you know, model. He just needed antibiotics and then to get out of there so. You end up repeating yourself a lot but fine if that’s going to give him the best care and that’s them being thorough and we’ll take it.
Parents who had had several years of experience of coping with their child’s long-term condition said they ‘just knew’ when something was wrong. When health professionals recognised and trusted the views of parents and involved them in decision making it made for good relations. Several parents said that they tried to remain polite to health professionals who often seemed very busy and under pressure, but Clare said she’d learned to ‘stick to her guns’ when she knew her child was getting ill.
Communication with health professionals could also break down when doctors gave the impression they had not read the child’s medical notes properly. Being asked to explain again and again about their child’s medical background was frustrating for parents who were keen to get treatment started.
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).
Age at interview: 25
Sex: Female
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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.
When parents felt that health professionals were judging or stereotyping them it affected communication. Though many parents came to work well with members of their child’s health care team, some said they had the impression that doctors felt they were overly-concerned or worrying too much. Parents told us about occasions when their worries or concerns had been justified. Michelle said, “People misconstrue someone who’s worrying as being aggressive and they’re not, they’re just scared.”
Michelle took Jack to Accident and Emergency with a high temperature (he developed respiratory failure). The consultant and chest physiotherapist said she did the right thing.
Michelle took Jack to Accident and Emergency with a high temperature (he developed respiratory failure). The consultant and chest physiotherapist said she did the right thing.
Age at interview: 40
Sex: Female
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So I just knew he wasn’t right, because the Reg in A&E was like, “Well what have you brought him in for? He’s all right”. And it was the consultant said, “No”, he said, “if mum’s worried we’re going to see to him”. And there was changes on his x-ray but not on, where you’d be like overly concerned And he thought if it was OK for the two, and then he did say to me like, “When the infection peeks he will go rapidly downhill”. He said, “Because normally we only see them in hospital when the infection’s peeked”. Because, we miss the very first warning signs, which for Jack was the respiratory rate and the temperature. And immediately maybe just a little tiny bit more oxygen. He’s, he’s permanently on half a litre and he was in by three quarters to a litre of oxygen. So, which isn’t major but you think, and another sign with Jack is Jack doesn’t have seizures when he’s sick.
He’s, he’s the complete opposite to most people with epilepsy, so he does not have seizures at all when he’s poorly. And he, I’d be, we hadn’t seen the seizure so we were a bit, and his condition is like constant seizure activity. And they were like sort of the main things why we, we took him in. But I think a lot of people in A&E were like, “Why have you brought him?”, because he’s not, you know, he’s not like a, lifeless and floppy, he’s, and I was like, “No, he’s not well, I know my child. He is not well”. And A&E, the ICU consultant said, “You did exactly the right thing”, he said, “Because that is how it presents”. He said, “It’s like a little niggle, like a little bit of a cold first couple of days”, he says, “and then it just, once he gets it”, he says, “It just hits you”. And it affected Jack’s liver, it affected his blood pressure. He was on medication for his blood pressure. He was on for liver, he was on constant high fluids for his blood pressure and he was vitamin K for his liver. He had SVTs for… so it, it sort of like, and then he went into urinary retention. So it went like around his body I think sort of letting itself be known and luckily when it did we were on intensive care and they were best equipped to deal with it on there.
But we were lucky with like an experienced consultant was on A&E. Because the consultants, sorry the respiratory consultant that looked after us the first couple of days on the ward was a brand new consultant and she was fairly, she knew what was right, wasn’t prepared to listen to me when I, when I suggested things or asked for things for Jack. And it was the chest physio in the end that sort of knows Jack and was like, “No, he’s not right, get a blood gas done”. And they were, “Oh no”, and he says, “He’s not right get a blood…” And he, he insisted on the blood gas and that’s how we knew he was in respiratory failure, was because the chest physio knew Jack. So I think a lot of it is if, they don’t listen, and I know we don’t know everything but I know my child and I know when he’s tired and I know
When the GP described Daniel’s cold as ‘just a sniffle’ Nia felt she was seen as a young and inexperienced parent. Her concerns were correct as Daniel had pneumonia.
When the GP described Daniel’s cold as ‘just a sniffle’ Nia felt she was seen as a young and inexperienced parent. Her concerns were correct as Daniel had pneumonia.
Age at interview: 27
Sex: Female
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The GP was quite, actually quite dismissive and I, at the time I felt perhaps because I was a young parent I went in by myself, I didn’t take in a family member I just took him by myself perhaps that I was over, over concerned. You know that I was over compensating perhaps for my, my youth or my inexperience as being a parent. He didn’t really think, he was quite dismissive, and very quick to say “It’s just a little sniffle.” And that the vomiting was probably reflux and that I shouldn’t worry, I should give him Calpol and he would be fine within a couple of days. And it was a very short consultation. He did listen to Daniel’s chest and he, he declared that it was okay.
Right okay.
And sent us away just with Calpol.
But you didn’t feel particularly great about…?
No I didn’t feel massively reassured but then you think, you know who am I to question a medical professional who’s telling me, he must have experience with these things, he’s telling me there’s nothing to really worry about. So I would, you know I would believe that and take that on board.
And three days later he still hadn’t improved and I, you know lacking experience now was you know was looking to my mother for advice, and my mother was of the opinion that he was becoming dehydrated. He wasn’t wetting his nappy as often as we would have liked and it was my mother who took him to the GP on the second occasion because I was at college.
And the GP that saw him on that occasion was very concerned about him and immediately referred him to the children’s ward at [hospital name] with a direct access.
They then diagnosed the pneumonia he had on the left side quite an extensive patch of pneumonia. And they then put him in a side ward, you know.
Waj, who wears the hijab, felt stereotyped by one GP but has good relationships overall with doctors.
Waj, who wears the hijab, felt stereotyped by one GP but has good relationships overall with doctors.
Age at interview: 31
Sex: Female
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All the time I get the, the information. I’m not shy to ask even if I have to take long with the doctor’s until they make me understand what’s going on or what’s gonna happen and then I don’t leave. Because I have to be sure, because I don’t wanna go back home and start getting worried again and saying this and this. I ask all the questions that I want and I know and am clear what they told me and what and what to do if they tell me you’ve got to do this and that and this at home. I have to be, they have to be clear and they have to explain it to me properly for me to understand, then I’m happy. Then I understand what’s gonna happen. Because I don’t want to come back home and not ask questions and then couple of hours again go back to the hospital.
Okay. Okay. So you, you make sure that…
I understand and they make me understand that…
…that you are happy with the information?
Yeah. Then I leave, yeah.
Okay. And what, what has been the relationship with health professionals?
Good.
Good?
Yeah. Only one time that the doctor was… [laughs] I think there was that time when the doctor just stereotypes.
What do you mean?
Like just because I was wearing the covering and…
The, the…
Yeah and she thought, she thought that maybe because I didn’t speak English properly I’m one of those parents that I constantly bring my kids to the hospital she didn’t know the background and she just, ‘Oh, have you got thermometer at home?’ I said, ‘If I didn’t I wouldn’t bring her. How would I know that she’s got high temperature?’
Were you wearing the hijab?
Yeah, the hijab. Sometimes they intend, no offence to them. But sometimes even doctors can be ignorant and they would stereotype people.
Ignorant of your cultural background?
Yeah or not, sometimes or maybe they could get tired that every little thing, because with, with probably our community that they every little thing, even the baby’s got a headache or something, they tend to take them to the doctor’s, but so they brush everybody with the same brush thinking probably this is the same person as the other one that I just seen. Because they wear the same.
The hijab.
Yeah. But little does she know that I’m not the same.
So what did they say, okay, they ask whether you have the thermometer?
No, they said, ‘How do you know that your daughter’s sick? How did you know that she’s got temperature? Did you just touch her head?’ And I said, ‘No.’ ‘Well you could touch the head and the body.’ But I didn’t, no I didn’t do that. I’ve got thermometer. Otherwise I wouldn’t bring her here. And even if she had temperature and I touch her head, her head is hotter than normal, that shows enough that she’s got high temperature.
The hard work and professionalism of hospital nurses was often mentioned by parents whose children had spent time in hospital. As well as being seen as kind and caring, nurses were also often thought to be good at explaining things. Some nurses had helped them get answers to their questions, others were supportive and really looked out for their child.
Harriet says Alfie’s oncology team are ‘amazing’ and seem to ‘know everything’. They keep Harriet and her husband informed and treat them, rightly, as the most important people in Alfie’s life.
Harriet says Alfie’s oncology team are ‘amazing’ and seem to ‘know everything’. They keep Harriet and her husband informed and treat them, rightly, as the most important people in Alfie’s life.
Age at interview: 31
Sex: Female
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They’re amazing. Very communicative, as soon as any new information comes in about Alfie they come and tell you immediately and so the channels of communication was, you always trust that, you know, everything that’s going on. Well, I do feel really lucky that we’ve got this oncology, I think she’s Alfie’s oncology nurse specialist. She’s called [nurse name] and she kind of, she seems to be the person that knows everything. So more, almost more than the doctors and our consultant who we see regularly but isn’t always there. Whereas [nurse name], I’ve got a phone number for her. I can ring her anytime kind of thing and she seems to be the one that kind of who knows all the information that’s coming from all these different places from [hospital], from the doctors, from the nurses. She’s the one that kind of collates everything and, and she’s brilliant and is always on top of it. So that’s been a big source of reassurance for us.
I do think from my experience the medical profession is very transparent. It’s brilliant. I remember saying to our consultant on about day three after Alfie’s diagnosis “Is there anything you’re not telling us”, you know? “Do, you know, things about him in, you know, his condition that you’re withholding or that you’re waiting to tell us until, you know, for sure or…”. And he said, “No, it’s your child and it’s your information. It’s not, it’s not our information, it’s yours and you will always know everything because we don’t have the right to withhold it from you, it’s your child”. And I’ve always found that really reassuring because I’ve always felt like, it put us as the people that… rather than the doctors and consultant thinking, “Oh, we do know that about Alfie and it’s not great but let’s wait and just see”. I would have hated to think that could have happened and I’ve, it made us, it made [husband] and I the most important people in Alfie’s life, which we are, and that’s, that’s what was the main para, paramount when he said that, so I found that really reassuring.
Harriet was worried by the Alfie’s diagnosis of influenza B until the nurse explained what it was. She says “influenza sounds much more scary than flu.”
Harriet was worried by the Alfie’s diagnosis of influenza B until the nurse explained what it was. She says “influenza sounds much more scary than flu.”
Age at interview: 31
Sex: Female
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So we’ve gone through the motions as per normal. In the hospital we’re in our own room and having these various IV antibiotics. And I remember a nurse came in with a, a mask and half of me was completely alarmed. What’s going on? And she said it’s too late now, but I’ve got it anyway but he’s, we’re wearing these because he’s got influenza B. And we sort of said, “Gosh”, because influenza sounds so much more scary than the flu for some reason. It’s some psychological thing. I’m not, particularly influenza B, you know, something as a, as a layman you don’t understand what on earth that means or I didn’t even know there were different types of flu that you could get. I’d no idea the implications or whatever.
Was it explained to you?
No, not at the time because it was no, not right then. And we, but we said “Is this something like really serious?” And I remember our nurse saying, “No. You know, it happens sometimes, kids on treatment and you, you know, it’s something that you’ll work through you know. It’s good that we know what it is and we will look, you know, that’ll be a, a path that we go down now. It’s good that we’ve got a diagnosis of something”.
See ‘Messages to health professionals’.
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