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.

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.

There has been quite an impact on his schooling,

Yeah.

He’s always found maths a difficult subject, and I feel he has missed a lot of his maths particularly that he, I’ve had to do a lot of catch up with him at home myself. I’ve had to teach him a lot. The school that he’s been at has been both supportive and obstructive if that’s possible.

Right.

When I’ve rung and said Daniel’s ill he needs to be off school they’ve been, oh tell him, they’ve expressed concern, they’ve expressed upset, Don’t worry about it blah, blah, blah. But as he’s got older especially towards the sats that he did this year I’ve said, Would you please send me work home. Would you tell me what the topic is in maths, or would you Even if he’s not fit to do the work at least I know what he’s missed and I can maybe do something about it when he’s feeling a bit better. And they didn’t send work home. I never got any work sent home at all. And at one point he’d had so much absence, this is in his final year, Year 6 this last year they actually reported me to the education welfare officer cos his attendance was so low. And it’s because he’d been off with chest infections and pneumonias and all the rest of it and when I actually explained it to the education welfare officer she apologised and she said, I’m really sorry that you know that you had to explain all this to me, and I said, Actually the school haven’t been sending work home. I’ve asked for them to send, I’ve encouraged them to send, you know at the end of the day I am a teacher. Okay I’m not a Maths teacher but I should be able to do primary school Maths and my husband is a Maths teacher. The other subjects we are able to help him with. Please will you tell the school we’d rather they were more supportive in sending work home and telling us what he’s missed?

So I think it has impacted on his school. Fortunately he’s been able to catch up but mainly through our own efforts not through the schools effort.

Yes, yeah.

Through our efforts as parents.

And again many parents might not have the skills or the time or the ability to do that. So I think that there is a gap in many schools in supporting families when children are off. He’s not been off long term, he hasn’t been off for three and four weeks at a stretch, it’s usually three days here, four days there, two days here. It’s in bits but that, in some ways that’s even more disruptive than being off for a long period.

Whereas at school they will not administer any kind of pain relief, none at all. And if they have antibiotics, if they’re on three a day dosage regime they will not administer it in school.

Right.

You have to give it, bearing in mind it says, Take at evenly spaced intervals, this means you have to give it at sort of seven, half past seven in the morning before school, then nothing until half past three at the end of school, and they suddenly again at maybe six o’clock before bed. But you’ve got this big gap in the day. They would only give antibiotics if it was a four a day regime.

Okay.

For some antibiotics it’s four a day

Yes

..regime but for amoxicillin it’s usually three a day, they refused point blank to give it in the middle of the day. Which isn’t helpful.

No, not at all.

And when you work and it might have been one parent has dropped him off in the morning and the other, you’ve got to keep the amoxicillin in the fridge,

Yeah.

How are you then supposed to get him to school, so what usually happened is he didn’t get it at all until he managed to get home, which was usually by about four o’clock, so you’ve had seven, seven thirty, 4pm. and then you might as well give him two spoons at once because there’s no gap between the next dose. So I don’t think that was very helpful. And it almost encourages you not to send him back to school until the antibiotics are finished, even if he’s looking better and it’s just a case of finishing the course.

Well as I say in the past we’ve had to maybe cancel family events, we’ve had to re-schedule important mile stone occasions like his Christening,

Christening.

I, we’ve had to cancel a birthday party in the past because he’s been ill. Things like that, or we’ve had to say we can’t visit for example my Granddad if Daniel is, he has a cold or a chest infection. Even if he’s on the way to recovering because I don’t want to expose my Granddad to that type of infection. We would prefer to stay at home and not, than to do that. So we’ve frequently had to change our plans for doing things, in terms of impact on myself and my husband.

I wasn’t aware that asthmatic children were recommended to have the flu vaccination until Danny was probably about six or seven years old. So for the first about six years of him having asthma nobody actually ever said to us he could have a flu jab. And it was only when we moved to a new area in 2005 we moved to [place name] I think it was maybe 2006 was the first year that they suggested he should have a flu jab. They gave him a half dose of the flu jab.

Right so what did you, how did you feel about that?

I was disappointed because he, between the ages of 0 and 4 he had substantial issues with chest infections and pneumonias, he had numerous hospital admissions, particularly in the winters of those first four or five years of his life and it did then bring it home to me we could perhaps have prevented some of those admissions through having the flu jab earlier.

So when you were told about the flu jab was it an easy decision?

It wasn’t initially an easy decision because I knew Daniel already had a, well not a phobia but he was scared of injections. He’d had the MMR vaccination at 18 months and he’d been quite upset about the idea of that. And he’d had to have blood tests taken at outpatient clinics. He’d had the grommets put in and he’d had a cannula put in, so he’d, he’d already experienced having injections and he didn’t like it. So there was the consideration of putting him through a traumatic experience of having this injection at an age where he didn’t really understand why it was beneficial to him. But then realising that it was something that could really improve his health in terms of you know not getting any more flu like illnesses, we felt that it was a traumatic experience worth going through.

Yeah we tend to encourage him to rest as much as possible so one of his hobbies for example is horse riding which obviously is outdoors, in the winter it’s a lot of cold air going up your nose which is another potential trigger for asthma, and it’s a bit you know dusty and etcetera. So we tend to withhold things like thatif he’s starting to show symptoms of flu-like illness. And encourage him just you know to rest as much as possible. Not over exert himself too much so we try and reduced a lot of the likelihood of him becoming breathless and wheezing unnecessarily. Another thing that is just making sure he stays warm you know if he, if he feels cold you know make sure we’ve got the heating on, make sure he’s got a blanket or whatever. But we don’t do anything else particular I don’t think.

If for example when I was looking at the swine flu jab back in 2008, I looked at scientific papers, I looked at the trials data that was brought out by whoever, you know the pharmaceutical companies, and that kind of, and weighed up the pros and cons. But a lot of parents wouldn’t be able to necessarily understand that information. My background as a scientist helps me to do that. A lot of parents wouldn’t understand the scientific papers, they wouldn’t understand the outcomes of the clinical trials. So it is not necessarily an approach that other parents might be able to take.

You know being able to comprehend why a particular, why is this, has this swine flu jab been approved, well it’s been approved because the data shows that it’s effective.

Yeah.

But you when you read, you know yourself when you read trials data you read scientific journal articles it’s nothing’s every 100%, you can never say this is, you know this cures this, this makes this better. There’s always somebody is made better, somebody isn’t, somebody gets worse but the general you know trend is that this drug is beneficial.

Yes.

But it’s never 100%.

Yeah.

It’s never, with vaccinations it’s, it isn’t with any kind of drug, so you’re always making a cost versus benefit kind of assessment but I base that very much on the evidence that I can gain.

Yes, yeah. Yeah. So you go to the papers and

I go to the papers, I go to the data,

you go several steps back to look at?

Or if I can’t get hold of it myself I’ll ask my GP can you get hold of, particularly for the swine flu data I asked my GP could he get hold of clinical trials data which he could, and he did and he provided that for me.

Okay.

And I went away and read through it and then I was satisfied that the Pandemrix jab was suitable.

The other thing that I’m aware of in Daniel is that I do believe that antibiotics have perhaps led to him developing lactose intolerance. He has been diagnosed with lactose intolerance which he didn’t have until he was about 9. There is a link between the commensal bacteria that live in your gut and things like lactose intolerance. However I feel if he hadn’t been given those antibiotics in the past for his ear problems and for his chest problems he would have been significantly more unwell, and that’s more of a risk than being lactose intolerant for example.

However overusing antibiotics can lead to digestive problems, diarrhoea because it not only do the bad bacteria you know become affected by the antibiotics, also your commensal bacteria do as well which obviously isn’t ideal, so I have been, I have thought a lot in the past about whether long term use of antibiotics might lead to some kind of problem in the future, you know digestive problems for example in the future. But then you think in the here and now if I say that we don’t use the antibiotics, is that going to lead to you know a more serious chest problem? Is that going to lead to becoming significantly more unwell? It is a difficult decision to make. I feel very much led by the GP. If my GP is saying I want to prescribe them then he must feel it’s necessary. I know GPs are encouraged strongly not to give antibiotics unless absolutely necessary so if he’s recommending it he must feel that it’s necessary.

And does he get any bad, has he ever had any bad reaction to the antibiotic?

No, no.

So he tolerates it?

The only thing we’ve noticed as we say he had periods of diarrhoea and stomach pain when he was about 8 and they diagnosed lactose intolerance.

Yes.

Now we don’t’ know whether the lactose intolerance was caused by an episode of gastroenteritis, because having stomach pain and diarrhoea could be gastroenteritis, and that that’s led to the lactose intolerance. Or whether the use of antibiotics over the 8 years of his life at that point had caused the lactose Intolerance.

Yes.

We don’t know.

I: Yeah, yeah.

All I know he wasn’t lactose intolerant up until that point.

Have you raised this with the doctor, this?

We, well they sent us to get the diagnosis of lactose intolerance we had to go and see a paediatrician again at the hospital. I think I did discuss it with them, but the answer was they didn’t know.

Right.

We don’t know the cause, all we know is he has lactose intolerance. And then they sent us to see a dietician who gave advice about diet.

I suppose in a way if the lactose intolerance has been caused by antibiotic use I think it’s a small price to pay for having a child who is otherwise okay, and hasn’t had you know a really, a bout of pneumonia that’s cause him to you know to get to the point you know, children do die of, of things like pneumonia and chest infections. You know so if we hadn’t used antibiotics in the past you wonder what could have happened. So I suppose lactose intolerance although it’s a bit irritating, it’s not the worst consequence that could have happened.

Yes you know I’m as having sort of studied microbiology myself at university I’m aware of you know antibiotic resistance and the need to try and you know not overuse antibiotics, so as long as I don’t feel that Daniel is getting significantly worse quickly I’m happy to wait you know a day or two to make that decision to use antibiotics if it’s necessary.

What are your views about sort of any problems or any drawback on, on using antibiotics? Either for your son or then on a kind of wider level?

Obviously I’m aware of antibiotic resistance problems and antibiotic resistant bacteria, things like MRSA, C-difficile have developed resistance you know to the mainstream antibiotics.

I have thought a lot in the past about whether long term use of antibiotics might lead to some kind of problem in the future, you know digestive problems for example in the future. But then you think in the here and now if I say that we don’t use the antibiotics, is that going to lead to you know a more serious chest problem? Is that going to lead to becoming significantly more unwell? It is a difficult decision to make. I feel very much led by the GP. If my GP is saying I want to prescribe them then he must feel it’s necessary. I know GPs are encouraged strongly not to give antibiotics unless absolutely necessary so if he’s recommending it he must feel that it’s necessary.

We sometimes see a nurse practitioner if in an emergency you know, if she’s the only person available and she’s allowed to prescribe. She’s far more reticent to prescribe antibiotics.

Okay.

So on the last occasion I mentioned in July of this year my son ended up with another episode of pneumonia, we saw the nurse practitioner for the first consultation. She prescribed steroids but not antibiotics and we went away, you had three or four days at home, getting steadily worse, more and more lethargic, more and more mucous, more you know more generally unwell. We then went back to see the GP who agreed that actually he needed antibiotics in addition to the steroids and I felt that perhaps that should have been done on the first occasion, knowing his history. And obviously the nurse practitioner didn’t know the history. But then again I understand that she’s been advised not to give antibiotics unless she feels they are strictly necessary.

When he was very young they could have been a bit more pro-active in monitoring things.

Yeah.

They do expect if a parent is staying with the child, especially overnight they rely on the parent very much to do the monitoring of the child. If the child needs the toilet and is of the age to go to the toilet you take, even with a load of monitors attached you take the child to the toilet, not the nurse. Which for some parents you know I didn’t find that too difficult once I’d understood you know how to unplug the drip, and wheel it to the toilet with a child who needed to sit on a potty. You know that kind of thing, you become quite, you know you adapt quite quickly. But I know other parents who found it difficult and they didn’t like having to you know move around a cannula or you know have to deal with their child who’s got wires coming here there and everywhere. They just, they’re frightened of it.

Yeah well the doctor, the doctors who saw him on the paediatric ward were very polite. They were very understanding, the nurses, I felt could perhaps be there a little bit more. I think they were very busy, they left you to your own devices quite a lot so if the machine he was connected to a pulse oximeter which measures the oxygen saturation levels and his were frequently dropping well below the required level and the alarm would go off, and you would wait and nobody would come so you’d have to go and fetch the nurse. And Is this okay? You know, Does he and eventually they put, I think they put him on oxygen for a period of time as well to improve the saturation levels.

Yeah.

So the doctors were very good when you spoke to them but I felt maybe the nurses could have been there a little bit more, and a little bit more responsive to things like the alarms going off.

Did that, did you feel, did that make you feel sort of that you had to be monitoring?

Yes.

And alerting them?

Yes and I learnt very quickly that if I didn’t, or somebody didn’t monitor what was going on and check for example if he was due medicines every four hours, you have to go and remind them that four hours has passed, Could you please provide the next lot of medicines. And on the children’s ward every time we’ve been there they’ve expected parents to administer the medicine. So they would provide it in a syringe but you would have to give that to your child, unless it was going in through a cannula. Any oral medicines that you would have to give yourself, which for me is fine but I know some parents found it difficult, speaking to the parents on the ward they didn’t feel confident necessarily in making their child take medicines.

Yeah, yeah.

Or in monitoring them, particularly at night when there was less staff on the ward. It was very difficult to get any kind of rest for yourself because as soon as an alarm went off you would have to get up, go fetch the nurse, ask questions, check throughout the night that he was receiving things like the paracetamol during the night, every four hours.

Do you know what other treatment he had?

He was given some intravenous fluids initially

Yeah.

and that was put through his foot, which again was the only way that they could get a cannula in because he was dehydrated. It was in the foot

Oh okay.

and I had to hold him while they inserted, they tried in his arm and in his hand, which they couldn’t find a vein and obviously in an adult it’s quite distressing to have a cannula inserted, I’ve had it myself and it’s quite painful. They did apply anaesthetic cream but eventually they could only get it into his foot, so he was, he had a tube through his nose that he was connected to and a tube in his foot. So it was very difficult to pick him up or reassure him because he had all these tubes. So they did initially provide some extra fluid and I think they put antibiotics as well, just as a, more of a preventative thing really because they weren’t sure whether it was a bacterial chest infection or a viral infection.

We had a couple of occasions where we took him to A&E because we felt he was dehydrated, and if we’d have gone to the out of hours GP they would have sent him to A&E anyway. As he’s got older we’ve tried to avoid A&E because up until recently anyway our local A&E did not have a separate children’s area, you had to sit with the adults up until relatively recently. And inevitably you only went to A&E on a Friday night or Saturday night when it was the worst time to possibly go so we’ve always tried to avoid A&E. So if we’ve ended up in A&E it’s usually because the out of hours GP has actually sent us on there. I think we’ve only been to A&E once in the recent past of his asthma and that was because the out of hours GP sent us there.

Yeah. Okay so now you’d,

Now we’d, our first port of call would be the out of hours GP.

And if, the only time I would go straight to A&E is if they told me they couldn’t see him within maybe a couple of hours of me ringing up.

And what have you found or what did you find at the time when you were there on a Friday or Saturday night that you wanted to avoid? What was it about it?

We wanted to avoid drunk people, there’s a lot of drug addicts people like that turn up you know sort of you know people that maybe are not there because they are genuinely ill, but they are there because of self-inflicted reasons. And unfortunately the louder you shout, it seem to be the quicker you get taken at least out of the waiting area. I had one particular experience when Danny was a baby, he was probably around 18 months old, and it was a night time and he was so unwell that he wasn’t crying. He wasn’t making a fuss because he was so lethargic and we went through the triage process in A&E, they said, Okay, so now wait in the main waiting area. There was lots of loud shouting and people arguing, people commenting how loudly how long they’d been waiting even when it was apparent they weren’t terribly unwell, maybe they’d hurt, sprained their ankle or something. And eventually after what seemed like a very, very long time, which probably maybe an hour or an hour and a half, they took us through into the treatment area,

And what’s your experience of out of hours? And is the only reason you’d go to out of hours you know if it’s, if the surgery is closed basically? Or would you

Yeah I would only go to the walk in centre or out of hours if my, either my GP was closed, or if they refused to see him. Now they’ve never

Yeah, yeah.

completely refused to see him.

Sure.

But if I felt I wasn’t able to get an appointment with, I wouldn’t necessarily go straight to A&E, we have a walk in centre that’s open until 9 o’clock at night.

Okay.

Every day of the week, so we could go there. It usually means a long wait, but when the GP closes about 6 o’clock there is an out of hours service for the whole of the area where I live,

Yes.

So there’s a particular phone number that you ring and there is one health centre in the town centre where you have to go to take the appointment.

After 9pm the health centre in town has the out of, has out of hours GP’s. So all over night I think from 7pm till 7am you, you have to ring the call centre, give them a description of the problem. They ring you back, a triage nurse rings back and they decide whether you need to be seen at the health centre or whether they can give you advice over the phone. And usually if it’s a child with Daniel’s condition they give you an appointment within a couple of hours. But it could be 11 o’clock at night, they might say there’s an appointment at 11.30 and so you have to get the child out of, you know the house. Wrap them up warm, get them in the car. And for us it’s a trip of about 9 miles to the out of hours clinic in the town centre.

And what’s your experience of using them for these flu episodes?

They’re actually, generally very good and they tend to err on the side of caution. And there have been a couple of occasions where they’ve actually sent us onto A&E.

Yeah.

Feeling that he perhaps needed supplementary oxygen and really

Okay.

really he didn’t, he just needed the steroid treatment so they, they do seem to be actually more overcautious because they don’t know the child’s history. They haven’t got the full notes to hand they tend if they’re in anyway, if his oxygen saturation level for example is not within sort of 95 or above, they would always send you onto A&E.

Yeah. And, and

The, sorry the worst thing is getting hold of prescriptions at that time of the night, there is one chemist that’s open till midnight.

Okay.

But if you happen to go at half past eleven,

Yeah.

By the time you get the prescription you can’t pick up the prescription anywhere, there is nowhere to get it until the following morning. So then in some ways it’s almost been a wasted experience because you could have waited for the GP at 8 o’clock in the morning. So the, it’s seems a bit counter-productive to have an out of hours health centre that’s open all night, but they, the pharmacy next door, right in the same building is, shuts at midnight. So after midnight, between midnight and 7am, well 8am there is nowhere to get a prescription.

Do they give you anything on a kind of emergency basis if you need steroids or something? Do you

Not, not at the out of hours GP.

But then it’s A&E I suppose, that’s different.

Yeah A&E will give you, will give you a small course of maybe a 24 hour or 36 hour course if you go to A&E.

Okay.

But if you go to the out of hours GP at the health centre they give you a standard green prescription form which has to be taken at a pharmacy.

And what would you do when these things start happening? You know you sort of up the inhaler and you’ve upped the, his standard medications but then if, if that’s not enough what do you do then at that point?

If it’s you know an ordinary weekday I would ring my GP in the morning as early as possible, and ask for an appointment the same day, which they generally are able to give for children. Sometimes we have to go up, sometimes they don’t give, even though I ring up and say, My child’s asthmatic, he’s known to have problems with chest infections. I think he needs additional treatment urgently. They don’t always give an appointment. They have to have a nurse ring you back and go through a triage process over the phone. So sometimes you have to wait until the, almost the end of the day to get an appointment.

Right.

Which sometimes I’m not terribly happy with, because children can progress quite quickly into a more serious condition. But that’s the system that they operate. We do usually get seen the same day. If it’s a bank holiday or out of hours we have an out of hours GP that we can ring, usually again they’re able to see him within a couple of hours, if not we would go to A&E to seek the additional medication.

It was the November after, he was born in August, and by the November of 2002 he started just really with the symptoms of a cold, well it would seem like a cold. With a runny nose, sneezing, coughing and that developed into projectile vomiting of his milk. We took him to the GP and initially they, the words of the GP were, It’s just a little sniffle.

I remember those words very clearly and he was very, not very concerned at all. He just said, It’s just a little sniffle, children get ill you know, it’s a virus. Maybe give him Calpol if he has a temperature, it’ll improve. 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. So my mother collected me from college and took me and Daniel and herself off to the hospital where we waited for a paediatrician, and they agreed that he had at least got a chest infection. They sent him for chest x-rays so I remember being taken by a porter from the children’s ward to the x-ray area. Now the x-ray area is full of mainly elderly people, very, very ill people and it’s only at that point when you get to the x-ray area and you’ve got all these ill people around you that you realise actually this could be quite serious. You know my son’s very, he was a small, fairly small baby to start with. He wasn’t, didn’t have a lot of extra weight anyway.

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

It always starts with an ordinary head cold. Every time it starts with an ordinary head cold. So now knowing that that is the trigger we always, the minute he starts with any kind of sneezing or cold symptoms we increase the amount of preventative inhaler that he takes. Or we double the dose usually of Becotide inhaler. And we give him the Salbutamol Inhaler regularly, even when it’s not necessarily evident that he needs it, and that’s, that’s the advice that we’ve been given by our GP. Sometimes that’s enough to prevent it going any further. Although he does usually experience shortness of breath, more than a child without asthma would experience.

However, especially in the winter it usually develops into, onto his chest. So he gets wheezing and crackles on his chest. And he’s often requires antibiotic treatment and supplementary steroid tablets, prednisolone tablets.

Yeah.

Which we have to dissolve in water. But because I’m very aware now of the progression and the, you know the sort of the alarm symptoms for needing the supplementary prednisolone and the supplementary antibiotics that when I take him to the GP they usually immediately agree with me, and there’s no debate. I go in and say, I feel my child needs steroids and perhaps antibiotics, and usually they say, Yes we agree. And they give us the prescription and then we’re able to deal with it, usually now at home.

The first I’d say five, six years of his life we ended up in hospital every winter at least once.