I think having the sort of the same nurses really helps. So it’s not someone new. So they all know her and even if you know we’ve been down in A&E, and that happened last time, one of the nurses from the ward came down and she recognised [daughter’s name] voice behind the curtain.

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.

I think, I mean generally speaking absolutely everybody that you come across in the hospital from the people who weigh him when we go up to his general allergy clinic to we had students, one of the times when he was in hospital, he was about 18 months old we had a couple of students in and it was the funniest thing ever cos they, they were scared to death of touching him. And they kept, this one he was perhaps 15 months old and this one person was talking to him like a fully grown adult and saying, Thank you so much for letting me examine your chest. And it was just and they were lovely, they were lov-, and generally speaking people are particularly with children I think. They’d go out of their way and you know. And as long as people explain things to children. You know, this is a stethoscope. You have seen one of these before haven’t you? Just occasionally you come across somebody who doesn’t take that time and it can be such a different experience for the child. And it, it’s. I know they are pushed for time and they’ve got a million things to do but that extra bit of time with the child I think is really very much appreciated by the child and the parents. And I think it makes their job easier in the long run as well because no one wants to be holding down a struggling child and taking two people to do it.

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.

And if there is anything you would like to say to health professionals looking after children like Ella.

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.

I think the, the only – I think improvements would be just communication. So, clearer communication. It’s like the doctors come round and they do their ward rounds, they look at the patient, they talk between themselves, they say “Thank you.” And then they go. And then you’re kind of – that was the first time. And then I, sort of like you kind of, ‘Okay, so what’s going on? So are we staying here longer, are we – you said when we came in it may be a 48 hour stay, we’ve now been here 24 hours, is someone going to update me? Do I need to get my husband to bring me in more clothes?’ And the, the small things that make the stay – or would make the stay easier, I suppose.

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.

Is there anything you would like to say to health professionals who are looking after children with?

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.

And is there anything you would like to say to health professionals, looking after these children with ?

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.

Imagine if you go, if we go to a country say in Africa they speak the language that we don’t understand. You feel uncomfortable and the little that you speak you think, oh my God, it’s embarrassing. With the younger kids, it’s fine, but with older people you’re thinking, I can’t understand the language.

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.

Just listen to the parents and also, although they are not medically trained, but because they know your children, know their children you know it’s a good indicator. So no, I think just to provide care in a way that it support, a little bit, you know, a pat on the shoulder or, or just asking how are you and how are you coping. Just a little thing, nothing to do with medicine, but just kind of acknowledging their presence and their worries, and just a little support and then the parents will I think work better with you as well.

A bit of human?

Mm. The human touch yeah definitely yeah. Yeah.

But it just became clear in your mind that having a cold is different from having the flu?

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.

Is there any message you would like to or anything you would like to say to health professionals looking after a child like Evie?

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.