[music, with snippets]

Emma: Try and use tissues, throw them away, cough on your arm and wash your hands! I can't say this often enough.

Liz: Did you know that 90% of unvaccinated contacts will get infected?
And so, I think people you know worry about the acute phase, but it's the long-term impact that's really devastating.

Emma: So, I think key point here is what you said earlier, is take a good history, make sure you've identified them, and then get advice from your paediatric infectious disease team or the HPSO.

[music ends]

Emma: Liz, it's very nice to see you again! Who knew that I would see you so soon? So, my name is Emma Lim, I'm a consultant paediatrician at the Great North Children's Hospital. And we're here on the Paeds Round, talking to Liz Whittaker from London, who we've actually already talked to on our Group A Strep podcast, but we've asked her to come back again because we liked her so much before, to talk about measle! Liz, would you like to introduce yourself?

Liz: Thanks, Emma. I'm Liz Whittaker. I'm a paeds ID consultant in St Mary's Hospital in Paddington, and I'm also an academic working at Imperial College London, and I have an interest in all things infection and immune related. And apparently, I'm becoming a bit of an expert in fever and a rash, who know?

Emma: The reason that we wanted to do this today is because everybody is getting very worried and excited about measles. And one of the problems is that because the vaccine is so effective, for so long, people aren't used to seeing it. They don't have much knowledge about it, and we seem to have lost that kind of knowledge about what measles is, how serious it is, how infectious it is and what to do about it. So, we're just here to fill in those gaps today.
So Liz, I'm just going to ask you some questions. The first thing I want to talk about is we had a really straightforward case. Our paediatric emergency department is always full of children with fevers and rashes, and the other week, we had children with fevers and rashes, and one of them turned out to have measles. So, my first question is, how can you tell if a child with a fever or a rash has measles or something that's not measles?

Liz: I think that’s an excellent question. And the problem is, it's probably not that obvious. They don't come in necessarily, with the slime on their head. The differential for a child with fever and rash is obviously very broad. Somebody I think Damian Roland, friend of ours, came up with the catchy phrase, which is ‘fever, rash, and the three C’s’ and the
three Cs are coryza, cough and conjunctivitis. Now that also pretty much covers adenovirus and few other things like that. So that's not necessarily going to be the most useful guideline. What really makes you think about measles is an epidemiological link, and the link there is usually that they're unvaccinated, or possibly partially vaccinated, but usually unvaccinated. That they've had a contact with a known case of measles or another unvaccinated child with a similar illness, that they've travelled to a high-risk area, in the Birmingham, the West Midlands at the moment. But it could also be parts of Africa, Asia, or Eastern Europe. That they are in a nursery with lots of other children who have also had measles, so known contact. So, these are your main questions that you want to ask to kind of make you think, right, I need to get this child out of the meeting room and into somewhere where they're not going to pass on very generously this very infectious virus.

Emma: Perfect. Thank you. And I think that the public has forgotten what measles is like as well. And so, you like and I have worked abroad, measles is a really nasty illness. It is not like chicken pox. It is not like a cold. And so, children with measles, when you say they have fever and a ration three C's, it starts like a cold. They have really nasty, sore red eyes, and this distinctive cough, but what's really obvious is they are much more unwell at this point than other children. Is there anything else?

Liz: And miserable. I completely agree, Emma. I think these children are sick and miserable, and I know we use that word in the context of Kawasaki, which is another really important differential for these children and why they need careful assessment. But children with measles, they feel utterly awful, and they behave like they feel utterly awful, whereas your average child with roseola or parva virus or other kind of common fever and rash patterns don't feel quite so unwell. And I guess the thing that discerns them, then,
from perhaps scarlet fever, is going to be the cough and the eyes, the two of the C’s may not be there in scarlet fever. That is another important differential. And as Emma was outlining, there is a pattern in how this comes about, in terms of three or four days of coughing, cold like illness, before developing a very distinctive pattern of rash, which parents may or may not be able to describe, starting behind the ears, the hairline running to the face and the rest of the body. And then over four to five days, becoming very confluent, become red, particularly on the face, and then it spreads and clears down through the rest of the body. And they may have the magical Koplik’s spots that every paediatrician aspires to see before they finish their career. And I've only seen them once, because generally the patients present after they've gone. But if you see them, you should definitely take a picture and put it in your teaching portfolio. So, the fever, rash and three C's and the three Cs are coryza, cough and conjunctivitis.

Emma: Brilliant. So, we've said we've got this really sick, miserable, rashy child there with measles. And I guess the next question you're faced with is, when should you admit children? So, what happens to children with measles? What are the criteria for admission? Because actually, in our case, the child wasn't that sick, and we sent them to the safest place, which is back home.

Liz: So most of these children will be managed in the community. So, we say that one in seven children will develop complication. But a complication can be something like Otitis media, which is probably the most common thing, or it can be more severe things like pneumonia and convulsions and encephalitis and things like that. And so, your usual red flags you'd be looking for in the ED or in primary care or any setting, are tachypnoea, fever that's lasting longer than you'd expect, lethargy, abnormal movements, poor oral intake, are the reasons for admission as usual. And then the other thing just to be aware of is that younger children are more vulnerable, and so we say the under twos, but absolutely the under ones, we would have a lower threshold for admitting. And I guess if there isn't a clear you know, you're not exactly sure what's going on, these children should have bloods. So not every child with fever and a rash needs bloods, but if you're thinking, could this be Kawasaki, is it measles? That would be a reasonable time to do some inflammatory markers, because generally with measles, they don't tend to have really high nutrical counts, CRPS and low albumin like you would see in Kawasaki, and they tend to have quite low inflammatory markers, even though they're so unwell. And then the other thing that they can get is secondary bacterial infections. And that’s the other reason that you might want to do blood in a particularly unwell child, is just to make sure you're not missing something that needs antibiotics as part of the management.

Emma: Brilliant. Yeah, I absolutely agree. I think, you know, people forget. They can get diarrhoea, they can get dehydrated, they might just need fluids. I think the other diagnostic conundrum is that children with measles get quite a high temperature, and then they have a fit. And then your problem is, is this a febrile convulsion, or do they have encephalitis? And that's another time you might want to admit them. You might want to do some tests, and then you're thinking about lumbar punctures, possibly doing some scans of their brain. And I think that people do get confused with the difference between acute encephalitis and SSPE. So, I'm going to ask you to go through febrile convulsions, encephalitis and SSPE, which is Subacute sclerosing panencephalitis.

Liz: This is really difficult, but this is what we do with paediatricians. The child in front of you has this snapshot here, and you have to make a decision about what you're going to do, and the safest thing may be to admit these children. And looking at admission rates in the UK, they are probably higher than needs be, but often with very short admissions. And I think that's because the safest thing to do maybe to bring somebody in for 24 hours for observation. Because if this is a febrile convulsion, which is common in this age group between six months and six years, then obviously they bounce back and recover quite quickly and will have relatively normal bloods and won't be lethargic and encephalitis in the recovery period. But if it is encephalitis which we don't want to miss, because there may be specific treatments we want to give. Or certainly, they may end up becoming very unwell and ending up in intensive care, then being in hospital is the safest place if they have that progression. Subacute sclerosing panencephalitis, which we all know way more than we should have given how uncommon it is, doesn’t actually happen in the acute phase. This happens later down the line and wouldn't be part of the acute illness. And it is vaccine preventable and that is the thing that is so tragic about the low vaccine rates in children at the moment. And it occurs in about one in 10,000 people, and we've all learned how to recognise this on an EG so that we can pass our membership exams. But I think actually we need a clever neurologist to remind us of it when the child presents outside the context of febrile.

Emma: What are the incidents of encephalitis? How would you expect somebody to recognise encephalitis, as opposed to ordinary seizure with a fever?

Liz: So, encephalitis, so convulsions happen, as you said, relatively often, in about point five per cent. And encephalitis, we think, is in about one in 250 or between one and 250 and one in 1000 so it is relatively common, to be honest, I think that's why I would say that was a relatively common for an infection. It’s just that the infection is rare in our setting. And children with encephalitis may or may not have seizures, which may or may not be focal or generalised. But their level of consciousness is subdued, and so they would be, often very lethargic. And I think you do need to remember that lethargy can be a symptom of encephalitis, I think people will be like, ‘Oh, they're just sleeping a lot’, and I’m
like that's not normal, children should be waking up to feed, and they may sleep more than usual when they're unwell, but they should wake up and be completely normal in between. And I think it's really important to be able to make that assessment. I think parents struggle with that sometimes, but that you as a health professional should be able to tell that they're not waking up, sitting up, having a drink, being inappropriately interactive, and then that's when we worry about encephalitis.

Emma: But for me, that is actually quite a common complication, and this, for me, is one of the reasons that I would really want my child immunised, because I think this is actually much more common than in ordinary viruses that we see in the community.

Liz: Absolutely, and you know encephalitis can have long, lasting impacts. And they may be severe, so these children may develop seizure disorders or other obvious neurology, but they can also be subtle in terms of neurodevelopmental and behavioural and learning difficulty impacts. And so, I think people you know, worry about the acute phase, but it's the long-term impact that's really devastating.

Emma: Absolutely. So, we've talked about the child who came to the emergency department, our criteria for admitting them, some of the complications, but we haven't really talked about how we definitively know if this child has measles or not. So, let's talk a bit about investigations.

Liz: I think actually, it's so confusing, because a lot of the national guidance talks about the Health Protection Team sending oral food spots, which they do, but most of that guidance isn't actually for a hospital setting. So, if you have a patient in front of you in hospital, and particularly if you're admitting them, then you need to send a diagnostic test through your hospital laboratory. And that will usually be an oral fluid test, so it's great you don't have to try and aim for the tonsils. They can just suck on the swab, and it needs to go into a viral fluid medium. And that will vary depending on where you work, but it's really good to go and find out what that is. And I can't tell you what every hospital does, and some hospitals are in house testing. Most hospitals are sending it to an external lab for testing. The turnaround isn't actually as rapid as it might be, for example, for a rapid test for flu or RSV, and so you will often have to manage this on suspicion whilst you wait for that diagnostic test. I think even if you're sending them home, it is helpful for the Health Protection Team if you could send a diagnostic test before they go, because otherwise they post out samples to the family, who then have to post it back, and we know that that's an unreliable system, so they don't get full surveillance data. So just even from a surveillance perspective, and then contact tracing, it's really helpful, if you don't mind doing that. Thank you. So that oral fluid test is usually for PCR, for the measles virus. It's a molecular diagnostic test looking for the genetic material of measles. They will also often do oral serology for IgM and IgG, which is less specific, but a very high IgM sometimes comes back quicker than the PCR and can also be really helpful from a diagnostic perspective.

Emma: Fantastic. And I think you've got to remember, this is a child with a rash, and often it's not as obvious as it sounds like when we're talking. So really, what you're going to be doing is taking some swabs, and you're going to be looking for flu, adenovirus, RSV. Maybe you'll do your normal viral panel, and then you'll do this extra swab for measles. And you might be doing some blood tests, and those would be standard routine full blood counts, renal and liver function. And you might also be thinking about streptococcus, so you might be doing a bacterial swab for that or thinking about an ASOT. So, at this point, it's just remembering that measles is around, and you need to add in an extra swab.

Liz: Exactly. And I guess the other thing to be aware of in a very sick, young infant, if you're not sure, do call your regional paeds ID team. We love chatting about children like this to give you advice and support if you're unclear. And actually, the list of investigations on your Kawasaki guideline will cover most of things that we would like you to send out a quick turning point if you’re in A&E looking for something quickly.

Emma: So, we've talked about this child and our child wasn't very sick. We know that in most cases, viral infections get themselves better. But should we talk about what we can do to look after or treat children with measles,

Liz: Yeah, and it is actually mostly supportive care. Som you've mentioned diarrhoea, really, really common to get diarrhoea in measles, and so input, output, weights, fluid management, the usual things that you would do for that, making sure they're not tachycardic, etc. NG fluids are always preference for me, but that will vary from side to side if you can do it. Managing the fever and then looking for secondary bacterial infections and giving antibiotics as appropriate. In terms of specific treatments, we don't have great antivirals for this, and you will hear people talk about ribavirin, we wouldn't recommend this routinely for patients with measles. And the other thing to be aware of is people who, particularly if you've worked overseas, like Em and I have you, you may have doled out vitamin A to children in a measles outbreak in another setting. That's actually not appropriate in our setting, because the children in a refugee camp, for example, have other risk factors for severe disease, including malnutrition and vitamin deficiencies. And so that's when vitamin A has been shown to have proven benefit. And there may be some children who are severely unwell in an intensive care or in a hospital, for whom vitamin A is appropriate, but for most children with meetings, we aren't recommending vitamin A. And then finally, for patients who are immunocompromised, there may be a role for intravenous immunoglobulin. This would obviously be on a case-by-case discussion with your virologist and paeds ID teams and pharmacy,
Emma: Perfect. So, it's management like usual, no extra vitamins, but obviously we're always promoting everybody to have a healthy diet and vitamins, I would say vitamins are better taken in vegetables rather than pill form. And just being aware, you know what to look out for if they deteriorate. So, remember, if you're sending children home, be very clear with parents. Give them good safety netting. Make sure they know where and when to come back. There's always information on Healthier Together, which is the website, which is now almost national and has a centre in London. So, you can text parents direct advice about measles and about fever.
So, our patient was well, we gave them straightforward advice. We sent them home, but they obviously, they got their measles from somewhere, and they going to give it to somebody else. So, we have to think about contacts. So, what kind of advice? What do we need to do at that point when we think we have a suspected measles, because we might not have it come down at that point.

Liz: So, did you know that 90% of unvaccinated contacts will get infected? Measles is so infectious, and a contact is pretty much anybody. So, it's anybody in the household, anybody you've had face to face contact with, and anybody who was in the room with you for 15 minutes or more. So that's a really low threshold for calling them a contact. It's a very infectious virus. But the most important thing, whether you're admitting the face to sending them home, is ascertain whether it's anybody who's highly vulnerable at home, and that would include pregnant people, infants under one year, who are both at risk of severe disease and are likely to be unvaccinated, and then anybody who's immunocompromised. And so, we'd really suggest that you ask families who is in their household and who they've spent time with, who might fall into those categories. And the good news is, we're not expecting you to do any contact tracing that you can then highlight that to the health team, because if they're in the middle of an outbreak, they get lots of referrals, and if you let them know that high risk person, they can prioritise that family.

Emma: So, if I'm sitting in a GP practice and I see somebody, I think this child might have measles, but they're relatively well. I would do a swab, an oral swab, I would give them some general advice about fevers, and then I would have to do some contact tracing, or better still, I could contact the Health Protection Agency. So how would I do that?

Liz: So, the Health Protection Team are unique to your locality, so there isn't one number for the country, but if you Google Health Protection Team UK, HSA, you will get a little box to put your postcode, and it will tell you how to contact your health protection team. At the moment, we're asking everyone to phone the Health Protection Team, because the numbers are not so high at the minute. And just to be clear, there is an outbreak, but it's not terrible, so it's manageable. If things get busier, it will probably become email contact Health Protection Team, but when you put your postcode in, they will know how busy their team is and will give you the appropriate recommendation to contact them, including a direct number.

Emma: So, you don't actually have to do anything other than ring this number and they will do it for you.

Liz: Yes, but you will make an immediate friend if you have the information to have, they are going to want to know. So, it's probably worth gathering back together before you call them. You will, initially probably speak to an admin operator rather than an actual health protection doctor, who will take details, including the name and address and contact details of the family and what your suspicious disease is, because they obviously take notifications for lots of things, but if you can then tell them who's in the household that you're worried, so there’s about pregnant lady who's 39 weeks, or there's somebody who's been on chemotherapy for six months, or there's twins under one, then actually that's really helpful for them in terms of prioritising their work.

Emma: Amazing. That's great. So, in our case, we had to do contact tracing for the whole of the emergency department, so all the people who were sitting in the room with a child with a fever and a rash. And so, this brings us on to a really interesting discussion. So, in our waiting room we ha, obviously, five children under one. We had some children who were waiting to have, who were having treatments and leukaemia and had come in with a fever, and we had staff members who were older who hadn't been vaccinated. So, Liz, let's think about what happens to all those contacts and what they need to have to keep them safe and stop them catching measles.

Liz: So, I’m a nerd so I love this! This type of thing, it’s like some kind of weird exam question where I get very excited. So, we know the highest risk groups are pregnant women, because they are at higher risk of severe disease, also stillbirth and premature labour. We know that under ones are at high risk of severe disease, so complications such as encephalitis which has been mentioned, are more common in that age group, and they haven't been offered a vaccine yet so are more susceptible. And then immunocompromised I'll come to in a minute, because it's a bit more complicated. So, for pregnant women, you don't need to do anything in a hospital setting, but the Health Protection Team will arrange for them to have human normal immunoglobulin in the community to boost their immune system. Actually, what they'll probably do first is get their booking bills checked and see if they have IgG, because sometimes people think they haven't been vaccinated and they have, and you have a few days to work this out, so that's what they will actually do. For child under one if they're under six months, we just give them human immunoglobulin. If they're six to nine months, it depends on the level of contact, they may either get human immunoglobulin, or if it's not a very close contact, we'd offer them a very early MMR. And if they're between nine months and a year, we give them an MMR. I don't expect you to remember that. It's on page 49 of the national guidelines if you want to go and have a look for reference. But the key thing to know is that if they get an MMR under a year of age, it doesn't count. And the reason for this, I think, quite interesting, and it's the reason why we designed a vaccine schedule, is that there may be maternal immunoglobulin around and the vaccine might not take properly. So, we will assume that vaccine has some benefit at that time as part of the protection, but we would want them to still have two doses at the normal time that vaccines are offered, which is the really key learning points there.Emma: So, if we're thinking about contacts, pregnant women will have human immunoglobulin in the community. Children under one, you need to think about whether they need treatment, but particularly under six months. So, they might get immunoglobulin under six months. The older ones might get an early MMR, which is a bonus MMR, and they still carry on with their normal vaccination schedule. And now we've got a tricky one. So, what about the child who is having leukaemia treatment, who's come in because they've got a fever?

Liz: This is really interesting, because humoral immunity, or your antibodies, are actually the protective mechanism here. So, things that you might have learned in terms of protection for other things are different when it comes to this immunocompromised. And there's two groups, group A, who might still have antibody, and therefore you don't need to worry about and group B, who don't have antibody, and you have to worry about.
Group B all gets IVID or immunoglobulin, and that will be given in a hospital setting, and through the specialist teams in pharmacy and Health Protection would call the paediatric team to arrange that. And for group A then you do talk to the Health Protection Team and do a risk assessment with them. So, this responsibility doesn't lie with you, but you may be involved in a conversation or discussion about it. And so, any child who has leukaemia or nephrotic syndrome on steroids or has had a transplant in the last year, or any kind of community modulation therapy is best check. Many of them may not need any post exposure prophylaxis, but we don't want to miss ones that do.

Emma: Yes, and I think it's really interesting because they're a really big group now. So, you have to think about all the children on monoclonal therapy, children with severe inflammatory bowel disease, all the children with things like juvenile idiopathic arthritis. So, I think the key point here is what you said earlier, is take a good history, make sure you've identified them, and then get the advice from your paediatric infectious disease team, or the HPSA.

Liz: The other thing to know, though, is that the child who had two per kilo of pred for their asthma for three days doesn't fall into that immunosuppressive category. You have to have a reasonable amount of immunomodulatory therapy to be at risk. And so those are children that we wouldn't really worry about. If they were unvaccinated and made contact, we would probably just give them an MMR. It’s anybody beyond that that would be a worry.

Emma: Yes, that's one of those questions that we get all the time. So short courses of prednisolone, that's like less than a week, or one of courses of dexamethasone for croup, they do not count as immunosuppressive therapy. We've decided. We've rung the Health Protection Agency. We've sorted out the pregnant ladies and the immunocompromised children sitting in our emergency department. But Liz what about all the staff? Because they were going in and out of the same room where the child with measles has, so what happens to staff?

Liz: Yeah, so I think this is something that worries a lot of people, because particularly for the more mature members of staff who might predate the introduction of measles vaccine, or in particular, the non-normal healthcare staff. So, if you're a receptionist or an admin person, you might have a different occupational health pathway. So, I don't know if you know, but your measles serology was likely to have been checked when you started work with occupational health, and so you should be able to access that, and that should be universal, but I know that sometimes things are missed. And there was a really nice table in the national measles guideline, which has the years the vaccines were introduced, and when we think people would have had natural immunity from infection in it. And so, I had a single needle vaccine, so try and guess my age from that. I didn't get an MMR, I got rubella when I was an older teenager. And the other question that comes up on this is, ‘If I know my rubella status. Does that mean I'm definitely protected from measles?’ And the answer to that is no, because we used to give the rubella vaccine separately from measles. So, most healthcare staff should know their status.
The safest thing to do, if you're not sure, is just have a dose of the MMR and it's a live attenuated virus vaccine. And if you have immunity, your immune system will just wipe it out. If you don't have immunity, it will give you immunity. And it's really beneficial to have it. And so generally speaking, if you're not sure, that's the thing to do, but most people should have access to their information. If you have someone who you know is not protected through choice or circumstance, then they should not be looking after these children, and they should be kept away from them where possible and encouraged to do what they can to protect themselves, including. PPE.

Emma: Thank you, Liz. Yes, originally you got a measles vaccine, then you've got measles rubella, and then eventually MMR. And I may have been in that category. We actually had somebody who actually remembers measles and getting measles. So, we have got people older than me, but only just and we did exactly what you said, and our occupational health team came down and gave everybody vaccinations, both at the time and opportunistically afterwards. So, I've just had my MMR, very recently. I had lots of aches and pains, exactly as you'd expect, but I won't get measles!
But I think the other thing that you alluded to, which is really important is, being really careful and protecting yourself from measles. So, about PPE and the need to have fit testing and wear masks, which seems to have completely gone out of fashion now. But I always wear a mask because when I'm in the emergency department, I am constantly seeing children with fever, rash and cough, and I have no idea what they have at the time I see them. So, what are your thoughts on this?

Liz: I don't want to get a cold, so I'm happy to wear a mask around infectious children, whether I also don't want to get anything more serious. So, I didn't find the trend of wearing masks that onerous. However, just to be clear, the national guidance for PPE for me is also to wear an FFP3 three with eye protection, a gown, and gloves. And this may seem over the top when you know that you're vaccinated, but it has two roles. One is to protect you, just in case your vaccine didn't work, very unlikely, but you don't want to get
sick. And also, they might have something else which is worse. So, it's always good to be overprotective, rather than under protected. And then finally, you might still get a very mild version of measles and then become infectious and then continue the onward transmission of this outbreak. So the main role that you have as a paediatrician is to try and break transmission, and that is either through early identification and isolation, so preventing all these people in the waiting room being exposed by picking up a child, that you can prevent from becoming unwell through the post exposure prophylaxis. But also, by not becoming part of the entire transmission cycle yourself by wearing PPE.

Emma: We always have to mention try and use tissues. Throw them away, cough in your arm and wash your hands I can't say this often enough. And you've got another hot tip for preventing measles or screening it early, don't you?

Liz: Yeah, so what we're suggesting, and I'm very unpopular with some people for suggesting this, is that we are really just on it in terms of those children and getting them into the side room quickly so that Emma and her colleagues don't have to phone 29 families who were in the waiting room and were exposed.
So, I'm not suggesting that every child with a fever and a rash has to go into a side room. That's just completely impractical. However, if you have a poster up signposting parents to things that they might want to consider, including, is your child vaccinated? Have you travelled to an area where there's lots of measles? And if you ask your triage staff or your reception staff to just ask those questions of children who present with a fever and a rash, are they vaccinated, or have they been in contact with some measles? You might be able to swiftly get them out of the waiting area and prevent having to do that extended contact tracing exercise. And it's a really simple thing to do. It's two extra questions for your reception staff and a poster, and it might just save a lot of time and effort, potentially a severely unwell, immunocompromised person.

Emma: We probably should have asked this at the beginning, but I guess we just got into the clinical side of it very quickly. But why is there so much measles around now, what's happened to change things?

Liz: So, this is a really interesting story, and there have been measles outbreaks in the last 10 years, so in 2013 and in 2019. And then there's been a rise in cases over the last year because of global outbreaks in Asia and Africa, and because of poor vaccine coverage, which started in the pandemic and has kind of continued. And so, in the UK, our vaccine coverage just isn't as good as we'd like it to be. And so, the dose uptake in two-year-olds for the first dose was 89% and we really need that to be 95% and for two doses at 85%. And actually, where I work in London, it's as low as 60% in some areas. And this is a real worry, to be honest, and the reasons for that are multifactorial.
And you know, there are a subgroup of people who are still concerned about autism in the MMR, which is probably the most over investigated outcome of any vaccine that's ever been looked at. And I can confidently, hand, in fact, say that hundreds of 1000s of children have been analysed. The data from hundreds of 1000s of children show that there isn't link between autism. But actually, it's more than that, and there's a convenience and an access issue for many families, particularly for that second dose, where it can be really tricky to get out of your zero hours contract on a Thursday afternoon which is the only time your GP practice offers it. There may be a language barrier, there may be a cultural barrier. So, for some groups, it's just not acceptable in their communities. There are worries about pork in the MMR vaccine, and we have a really great pork free MMR vaccine called priorix, which is available in most areas. So, make sure that people are aware, they can get a pork free vaccine. And then the final thing is that, you know, all of the negativity about Covid vaccines has just shaken people's confidence in any vaccines, and so they're just all a little bit worried about vaccines in general. And I think we have a role as paediatricians to know a lot about vaccines so that we can confidently talk about them with patients and not judge them if they're not vaccinated. There are many reasons why people don't get vaccinated, and usually, if you just say, what is it you're specifically worried about? Can I point you to a really good resource like the NHS website or the Oxford Vaccine Group website? Many families go and read them and are quite happy to take the vaccines. They just needed somebody they trusted to be positive about going to give them accurate information, rather than whatever nonsense is on TikTok and Instagram, etc.

Emma: I think it is a number of reasons that are really important. So, there was a slip in vaccination rates during the Covid pandemic because people just couldn't get there, and we haven't really caught that up. There is immigration from areas where there is less vaccination. So, we see a lot of people from Eastern Europe, for example, or from Russia or Ukraine, who just can't get hold of vaccines. And there is still some hesitancy about using vaccines, although, as we say, there's very, very clear evidence that there is no link to autism.

Liz: And so, one of the things that you know, if you're interested in a QI project, or something like that, that you could explore is whether there's any opportunity to do opportunistic vaccines where you work. So, UKHSA have a catchy MECC, which is, ‘make every contact count’. The idea there is that every time you see a patient to check their vaccinations, and if not, either offer to vaccinate them or signpost them to where they can get a vaccine easily. But we should be trying to do what we can, particularly in areas where vaccine coverage is low, such as London, West Midlands, to make sure that we're catching as many people, whether in front of us, as we can.

Emma: Yeah, actually in the Northeast, the vaccine level is really good for the first MMR, but not quite so good second dose, but it is better than other areas, which is one thing that we can be happy about. Opportunistic vaccination doesn't need to be difficult. So often if you see somebody on the ward just before they're about to discharge them. You can offer them vaccines. If they're coming to clinic for another reason and you happen to notice they don't have vaccines, that's another opportunity. And I think it's important to think about hard-to- reach communities. So, we're doing some really interesting work with the food banks and schools. So, I think that you need to look at your area and know what's happening in your area and how you can ensure that everybody gets the opportunity to be immunised, because it's a lifesaver. Literally.

[music starts]

This podcast is a collaboration between Medisense, medical education and the Royal College of Paediatrics and Child Health. You can find more creative learning resources on www.medisense.org.uk and of course a wealth of information on the important work of RCPCH on www.rcpch.ac.uk or #ChoosePaediatrics.

Emma: The views, thoughts and opinions expressed in this podcast relates only to the speaker and not necessarily to their employer, organisation, the Royal College of Paediatrics and Child Health, or any other group or individual.

[music ends]

RCPCH The paeds round
Neonatal herpes simplex virus disease – THANKS (think hands and no kisses) Transcript of podcast – October 2023

[music, with snippets]

Emma: Us not being open and talking about herpes so that we can do something about it, have all led to this awful tragedy that is part of your family history.

Sarah: Don't let anyone hold your baby without washing their hands, and, and don't let anyone other than the parents kiss your baby.

[music ends]

Emma: Let’s get down to rounds. Hello, my name is Emma Lim and I’m a consultant paediatrician at the Great North Hospital, and I would like to welcome you to The paeds round, your regular podcast from the Royal College of Paediatrics and Child Health

Emma: So Sarah, well welcome today and it's really lovely to speak to you. Would you just like to introduce yourself and tell us why you're here?

Sarah: Yep. I'm Sarah de Malplaquet. I'm the CEO and founder of Kit Tarka Foundation, which is a charity I started after the preventable death of my son Kit when he was 13 days old. Um, and he died from neonatal herpes.

Emma: First of all, Sarah, I just want to thank you for coming because to do what you did to start a foundation and to continually talk about what must be one of the most distracting things to ever happen to a mother is, is just so hard. If we go about how many years ago was this now?

Sarah: So he died in September, 2017, so he should be five now.

Emma: And how did you feel when you were pregnant with your first child?

Sarah: Um, absolutely over the moon. So we were really lucky. Um, and yeah, the pregnancy was pretty smooth. I mean, the usual like aches and pains and heartburn, but absolutely no concerns throughout the whole pregnancy until the very end.

Emma: And when was it that you had some inkling that things weren't quite right?

Sarah: when I was around 39 weeks, I actually got a rash on my fingers. Um, And this was actually a red herring that because I had a rash, I was taken into hospital and tested for, um, icp, cuz it was like an itchy rash. It actually turned out to be pom, it's, it called conflicts the, um, eczema. So that was a complete red herring. But because I was in hospital and my blood pressure was checked as a matter of course, and it was found to be high. Um, and that's when kind of alarm bells ring for the doctors. I mean, I'm absolutely convinced it was the white coat syndrome and However, once I was on that kind of intervention train, um, Because it was so close to the end of my pregnancy, I was kept in hospital and an induction was recommended.

Emma: So you'd had this wonderful pregnancy. It was your dream. It had all come really quickly and nothing had gone wrong, right till the end where you had a little rash, you got admitted and was found to have high blood pressure, which you reckon was seeing doctors and being in hospital.

And from that point on, it all became quite medicalized and you were booked for an induction. Do you want to tell us what happened next?

Sarah: Yes. So the planned home birth I wanted was out of the window. Um, absolutely devastated, but obviously wanted to follow what was right. And obviously it was a, the pre-eclampsia risk that, um, doctors were concerned about. I was really, really terrified because all I'd heard from friends who had had inductions were absolute horror stories.

And that went ahead with it had a PEs, the Pessie. Um, but within an hour or so, I started getting contractions and they were absolutely, unbelievably painful. Um, and they didn't stop.

And on top of that, I had a reaction to the PEs. So the insides of my vagina were incredibly, incredibly, like sore and painful. So any. Investigations down below were agony. But I wasn't really dilating at all at this point. I mean, to me, my body just wasn't ready to give birth.

Um, and probably the fat that I was so tense didn't help either. Um, anyway, we cont continued for a few hours. So, however, during this time, kit was being monitored. Um, and at first was, was thought to be okay. Um, but then there were some concerns around Kit. So at that stage it was suddenly category one cesarean section, and I was rushed into the operating theater

But Kit was born and he was born healthy and he was absolutely perfect, sweetest, sweetest little boy. Um, started crying straight away, had his AGPAR test and scored 10 out of 10. No concerns at all. Um, was given to me and James were doing skin on skin. And it was all like, I mean, I'll say it was all amazing, but it was, it wasn't because I was still in agony and it was, um, the exact opposite of the birth that I had planned.

And, but still we had our son and he was amazing. Um, and we thought that was the end of the nightmare. Um, and his blood sugar was found to be too low.

Um, and also at this stage he was a little bit cold as well. So there, there was some attempts to try and bring it back up. However, it was decided that he was at risk at this stage of getting ill. So he was taken into the special care baby unit.

Emma: So Sarah, You'd been through this awful birth, which was the exact opposite of everything you'd hoped for, which was a nice home birth. But as you said, you had the boy of your dreams, you were, it was everything. Seeing Kit. Had you thought what might happen after your baby had been born and had you ever considered that your baby might not be Well?

Sarah: Um, it just didn't cross my mind. And also, I guess at that stage we had met Kit and he looked like a very healthy, happy. He almost looked like he was smiling in the, his first couple of hours.

Um, he looked like a healthy baby. So even when he was taken into special care, I didn't think he was ill. And actually I was just desperate to get him home. Um, I went along with it, but till now I wish I hadn't. I wish I'd just taken him home and he might have still been here today.

Emma: So is this bit, you've been through this hellish labour, but you've got your baby, he's amazing and he just has slightly low blood sugars and he is gone to the special care baby unit and all you want is to have him back. What happened next?

Sarah: So he was taken upstairs. I was physically unable at that stage to go with him. I couldn't move. Um, so we decided James should go up with him, my partner. Um, and I was downstairs and that was absolute torment. I felt like he had been taken away from me. It really felt like that, like almost against my will, although of course it wasn't against my will.

We'd given consent, et cetera. But it felt like my son had been taken away. Um, and it was a, it was, wasn't until another few hours that I think James managed to get a wheelchair, managed to put me in the wheelchair and take me up to see Kit and pretty sure I was crying for most of those hours. Just so sad that after everything we'd been through and then for this to happen.

Um, and also I was kind of, yeah, pretty sure that he wasn't ill. I just really wanted him home.

Emma: And you were right because, um, they gave him some feeds and then he came back down to you a bit later, didn't.

Sarah: He did. It took six days. So although he had a trip downstairs still whilst he was in the special care unit, he was a, he was taken downstairs to see me at some, at one point when again, I wasn't well enough to go upstairs.

Um, and it was during that time where there were red flags that we now see as red flags, but at the time we didn't know. So kind of from day three, four, um, he was really, really sleepy. So he wasn't waking up for feeds.

I think he only woke up for about 20 minutes a. . Um, I was asked, I asked doctors, nurses, midwives, like, is this normal? You know, everything you hear about newborn babies is that they hardly ever sleep. They cry all the time. And Kit was hardly crying. Barely at all actually.

Um, and I was just told that he was a sleepy baby. Some babies are sleepier than others. Um, boys are sleepier than girls. Maybe it's because I'm allergic to codeine, so I'd have morphine at the birth. So maybe it was a after effects of morphine in my breast milk cuz I was at this stage trying to breastfeed him, but also pumping milk for the, um, bottle feeds.

Um, maybe it was that he was having too much milk because they're trying to get his blood sugar up. , there were all these reasons given, and I, I know my Google search history at the time is just like, how much should baby sleep? Why is my baby not waking up? Et cetera, et cetera. Um, but I was reassured that that is normal.

Emma: So Sarah, you told me that even though Kit was upstairs on the special care baby unit, you were worried that something wasn't right because he was sleepy and he was hardly crying and you even described how he didn't cry with painful stimuli.

Sarah: Yes. Yeah. So that was another thing that we were asking about. I mean, I think at this stage I wasn't necessarily worried. I was asking the questions, but because I was told it was normal and there was nothing to worry about, it was kind of Oh, okay. Even though that didn't, it didn't feel right.

We were consistently told that it was fine. he didn't respond to pain at all. So he didn't wake up often. He didn't wake up for the heel pricks that he was having, what feels like thousands of, um, and even when his cannula was, were being inserted, he didn't respond at all.

And, and I remember talking to James and talking to one of the nurses about it, like, why, why is he not responding?

Emma: So you are telling me that when somebody put an intravenous cannula, so uh, a line into his vein to give fluids, he didn't wake up and he didn't cry.

Sarah: Yeah. Correct. So if he, if he was awake at the time, which was rare, he. He didn't cry. Um, didn't wim her, didn't yeah, didn't flinch. Which we, we thought was unusual, um, but we're told it was normal.

Christo: Sarah, at this point, um, what communication, uh, had happened between you and either kind of midwives or the nurses and doctors on the special care baby unit to explain, um, because by this stage he'd been up on the unit for a few days, is that right?

Sarah: Yeah, so at this stage it was just a case of he, this is very normal for even full term babies born by caesarean.

Um, he's just taking a little bit longer to get stabilized. Um, we're being extra cautious to make sure he's okay. Um, and it wasn't until he was six days where they were happy enough with all the observations that he could then get discharged to the postnatal ward.

Emma: And you did manage to get your son home, didn't you?

Sarah: Yes. So he was down with us on the postnatal ward, um, on day six, I should say. This was pre covid, so thankfully I was in the whole time cuz I was still quite poorly. But James could stay with me

So we, we we're absolutely delighted to get kit back to the postnatal ward. He fed quite well, breast fed quite well on his first night there. Um, but the next day there were some concerns about whether he had jaundice or not.

So he was put under that special light, um, but that stabilized quite quickly and he was actually allowed home on his seventh day.

Emma: And how did it feel to get him home?

Sarah: Um, it was really mixed feelings. I was, we were absolutely so happy to have him home. Um, but at the same time, I was desperate to establish breastfeeding and it wasn't happening and I was in agony and. And that's, I think that that just felt like the only way I could help him at that stage, and I wasn't able to do that.

Emma: Why was it so painful to breastfeed? So with something else that worried you then wasn't there?

Sarah: Yeah, so I think it was about day four or five when I started getting blisters on my nipples from one of them particularly.

Um, and at the time I raised this with the midwife and also one of the neonatal nurses, and she got one of the breastfeeding specialists to come and speak to. Um, and at that point the blisters were thought to be as a result of using the wrong size like breastfeeding found.

Um, I was googling as usual, suspected flush. It was tested for flush, um, found not to be flush. Um, and what we now think is, you know, that's, that was a sign of HSV that perhaps kicked had transferred to me, and that was one of the signs that wasn't picked up.

Emma: So Sarah, these blisters, they were very painful, weren't they?

Sarah: Yeah, really painful. So it was, it made. Expressing milk. Really difficult, very challenging.

Emma: And how did they develop or heal?

Sarah: it just started as like red soreness, which I guess is expected with breastfeeding. Um, and then it was only a bit later that I noticed some blisters.

Emma: Um, and just at this point, having saw nipples when you start breastfeeding, I think that's really common.

But having blisters is quite unusual. And you'd never had blisters before and you'd never had cold ulcers either had.

Sarah: No, I've never had colds in my life or blisters anywhere that I can remember.

Emma: Yes. You, you, I know this is a bit personal, but you've not had genital herpes either.

Sarah: No, absolutely not.

Emma: Did you think it was anything else at the

Sarah: time? Uh, I didn't know what it was. I, I, I took what I was told to be the truth.

Emma: So we'll come back to those funny blisters a bit later. But meanwhile, you've been struggling to breastfeed.

It's been agony. Kit has got home, but he's still sleepy. But things weren't right. .

Sarah: Yeah. So after we got home and kind of announced his birth to the world, which we hadn't felt comfortable doing until then

Um, but we did, and then it was that first night where Kit just didn't really wake up at all. you know, we had our instructions about he has to take this much meal every two hours. I think it was at the time. Um, because Kit had been so sleepy, we'd been given techniques to wake him up, like strip off his baby, Glu grow, um, blow on his face, tickle his toes, but none of these things were working.

And he had hardly any milk at all that first night. And then the community midwife came round the next day for her, like day one visit. and I told her about my concerns and at this point he started to look a bit more yellow again. So I showed her a photo of him the night before and him that day, and she agreed that he did look a bit more yellow.

Um, she said in every other respect, he seems like a healthy baby. His tone is really good. Um, he looks really well, but she agreed he does look a bit more yellow. Um, so she recommended then that we take him back to the children's hospital to check again for jaundice, and she thought that the jaundice might be the cause of his tiredness.

Emma: just as you think that you're ready to get the congratulations and that your baby is back home with you, he seems more unwell and jaundice and sleepy, and you take him back to hospital. And what happened next?

Sarah: So we got to the hospital and saw a doctor really quickly. Um, and that doctor immediately recognized something in Kit that he was a poorly baby, um, and admitted him straight away and he was put back on antibiotics and his infection markers were high. Um, within a few hours, his care was escalated to the higher dependency unit in the children's hospital. Um, and he was, you attached to all the wires. Um, and he remained there for the next five days until he was 12 days old.

Christo: How did it feel, Sarah, to go from, uh, having your delivery and the first few days of Kit's, life being very medicalized to then going home, uh, and then to be thrown back into, um, another very medical and clinical, uh, situation with, um, high dependency care?

Sarah: Um, getting home was so nice. , I was just, from the minute I was admitted to hospital, I was desperate to get home and then subsequently to get Kit home. And then to go back, I, when I went back, I thought it would just be, he would just be under the lights for a little bit longer and then he would, we would have him home again.

But when he was admitted, yeah, it was like all our nightmares come true. Really. And just absolutely devastated to be back there.

Emma: So Sarah, you talk about how you've been at home and you've just been a bit sleepy and not feeding and you come back in thinking perhaps you'll just need the lights. But in fact, he needs antibiotics, he needs fluids. He's on the high dependency unit. Does anybody know at this point, what's the matter with kit?

Sarah: Lots of tests were done. So he had a lumber puncture. Um, There were various theories, like maybe it's a metabolic condition, maybe he's allergic to my breast milk. Cuz they, there seemed to be a pattern there, um, I guess all the usual tests that at no point was Hs feet suspected or tested for.

Emma: So Kit is now seriously unwell and he is getting a lot of treatments, but he is not getting better, is he?

Sarah: So at this stage, the doctors were still telling us that we would be home in, it was days and then it was weeks, but it was, we will be home soon and this will just feel like a bad dream. It was a difficult start to Kit’s life, but we'll have our little boy in our arm soon enough at home.

Christo: When you were speaking with the doctors and they were trying to find out more information about what might have led kit to be unwell, did they ask questions about your health, so about infections prior to delivery, or about any warning signs that with retrospect might have related to hsv?

Sarah: No, they didn't ask anything.

Um, so the, the, the big warning sign that was we there, which I've already talked about, is the blisters on my nipples, and they were well aware of these. In fact, James, who was my champion, was fighting for me to be seen by anybody because I was in so much agony from these blisters. Um, but they were never connected to kits, welfare kits, health.

Emma: So at this point, you and Anny, you've still got these funny blisters around your nipples and kits, despite everything that is being done for him is not getting any better.

How did things change from there on?

Sarah: So on his 12th day, it was by this stage he was having seizures, um, struggling to breathe grunting, which is the medical term for what we just thought as he just sounds like he's in a lot of pain.

But then he just start, he did start to look really unwell and really sad to be honest. . Um, so yeah, when he was 12 days and he was having all these uh, deterioration, they decided that he needed to be taken to the intensive care unit at the Alina.

So he was put in an induced coma and he was rushed up to the hospital there. And

Emma: How did that feel?

Sarah: So that was really difficult. That was the first time anyone had mentioned that your son might die. So that was an absolute shock.

We had to go behind kits in the car cause there wasn't room for two of us in the ambulance. Um, that alone was really difficult because Kit had always had one of us by his side until that point, except for his lumber puncture, and that was the only point that he hadn't had a parent by his side.

Emma: So you described Sarah, how, um, this is the first time you suddenly think, actually Kit is seriously ill and he may not survive, but so far nobody really knows what's wrong. Did they have some ideas when you got to the Alina Children's Hospital, which is in London?

Sarah: Yes. So when we first got there, one of the first things a doctor said to us was, have either of you had a cold?

So recently, because I suspect this could be herpes infection. So he sees several, often tragic, usually tragic cases by the time they get to him, um, a year. So Hal Kip presented that kind of overwhelming infection. Uh, the, he'd had, I think he had liver failure. So I think that was a warning sign for the doctor.

Um, and that was the very first time that we had heard the word herpes and were like quite shocked to be honest.

Emma: And what was your first thought when you were told he might have herpes?

Sarah: Um, I've never had a cold saw in my life.

We kind of moved on like I did Google it, but. We kind of dismissed that as it wasn't the cause at that stage, I think.

Emma: And things didn't go as you hoped. Kit didn't get better.

Sarah: Um, no. So by the time he was admitted into intensive care, they were just doing all they could to save his life.

They did send his blood off to be tested for various things, including H S V, but they knew that even if it was H S V at this stage, like they, it's too late to be just starting antivirals.
They needed to stabilise him first. Um, and it seemed like they had stabilized him, um, and recommended that we go downstairs and try and try and get some sleep

and then we got a phone call saying, you need to come upstairs. And so we did. We kind of knew what we were gonna find, I think, at that stage. Um, and we found a doctor desperately giving CPR ticket to try and bring him back to live. Um, but it didn't work.

And he, yeah, he, he died shortly afterwards.

Emma: Sarah, I'm so sorry. This must be so hard for you to talk about this. I think the thing that makes it so difficult is that horrible, inevitable feel that things are getting worse and you still don't know why at this point. Did they ever find out?

Sarah: Yes. After he died, We held him for a little bit, but by that point he didn't feel like kiss anymore.

I remember saying to James like, this isn't our little boy. He was really swollen. Kit was so like delicate and perfect, He, he just didn't look like him anymore and he had died so he didn't feel like our boy anymore. Um, we were taken home shortly afterwards, so we had to leave kit there.

Um, and we got a knock on our door of a couple of hours after we got home. A pair of police officers because at this stage it's an unexplained child death. Um, so officially we are suspects, I guess, and I absolutely don't fault that system. That's what should happen in a circumstance like this, but it was an extra.

Kicking the teeth to us. Um, they interviewed us. Um, left still had no answers. And it was not until the next day the police officers came back. They'd heard from the hospital that he had a diagnosis of H S V one, um, and that was what was gonna be put down as a cause of death. So the HSV had caused the organ failure, um, because it was a disseminated herpes version.

Emma: So Kit had died of type one herpes sinex virus, the virus. That gives people simple common colds.

Separate quote: we would ask any clinician working with newborn babies to not work clinically if you have a cold sore.

Emma: Uh, thank you Sarah. This is a terrible story and outta that terrible story, you've actually done amazing things, which is start a charity in Kit's name that champions working with hospitals and foundations around herpes simplex for the Kit Tarka Foundation.

Do you want to tell us a bit about it

Sarah: I did speak to a number of larger charities to see if they would help with what at the time was an obvious gap in the research. So the latest, the latest BPSU study that had been published at that time was 25 years old. There was an interim, interim one, which hadn't, I think it only got published a couple of years ago.

Emma: So Sarah, once you'd started thinking about it, you actually found there was a big gap in the knowledge around herpes simplex and how it affects babies. So there wasn't any recent research or studies, there wasn't much for public awareness and there wasn't enough for clinicians to be aware of what they should look out for

Sarah: Um, obviously there was a huge gap there amongst health professionals, doctors, um, on that side, what to look out for in babies, that kind of non-specific signs.

It's not always a bacterial infection. It could be a viral infection. Um, and on the other side, there was a huge gap in knowledge amongst parents.

Emma: That's amazing. And I think you're so right. I think viruses are really neglected and you've done more than that because you've also done a public awareness campaign called Thank. Haven't you, do you want to tell us a bit about that?

Sarah: Uh, yeah, so off the back of that survey we launched the Thanks campaign, which is Think Hands and no Kisses. Um, so it's all around the importance of good hygiene around newborns. Um, a lot of parents told us that although they let other people kiss their baby and don't wash their hands, they're not comfortable with it and that they don't want to be seen as overprotective parents or they feel awkward having these conversations. So we produce all these resources, posters, um, postcards, et cetera, and social media campaigns who kind of empower parents to make those decisions for their vulnerable newborns.

Emma: have you got three top tips or three top messages that you would like new parents to know?

Sarah: Um, don't let anyone with a cold sore near your baby. Don't let anyone hold your baby without washing their hands, and, and don't let anyone other than the parents kiss your baby.

And this might be number four, but anyway. Any expectant parents. If you have any known history of genital herpes, then please, please, please talk to your, um, midwife about it or your obstetrician. Um, don't be embarrassed. 25% of the population have genital herpes infections. Um, and we know that's actually is the most common way that babies contract HSV.

Emma:. This is such a tragic story and I think that your message of parents not knowing what is the right thing to do as in washing your hands and not exposing your baby's cold source, and clinicians not recognizing these nonspecific symptoms and treating it early and thinking about hsv herpes simplex virus, and.

Us not being open and talking about herpes so that we can do something about it, have all led to this awful tragedy that is part of your family history.

Sarah: Um, another thing that really surprised us from our survey was that only 15% of our respondents were us during pregnancy about previous genital herpes infections.

Um, I'm nearly 50% of birthing per appearance with a known genital herpes infection said it was not discussed at all during, with a health professional during pregnancy.

Emma: And that survey led you to lobby and change a whole lot of things, didn't it?

Sarah: Yeah, so one of the main changes that's come out of that is the nice antenatal guidance We, um, campaigned for that to now include information on herpes to be given to all expectant parents, and that's in there now, which is brilliant.

Emma: So Sarah, it's been a tremendous privilege to talk to you and to hear your story and hear about Kit, and I think that you need to reflect that it's, you one person has changed so much. You've changed the way clinicians think, you've changed how parents think, and you've changed policy at a national level, which is an incredible achievement for any one person.

[music]

This podcast is a collaboration between Medisense, medical education and the Royal College of Paediatrics and Child Health. You can find more creative learning resources on www.medisense.org.uk and of course a wealth of information on the important work of RCPCH on www.rcpch.ac.uk or #ChoosePaediatrics.

[music ends]

[music, with snippets]

Katy: We can treat it if we know early enough.

Emma: There is such a stigma about herpes simplex virus.

Katy: Your result is only as good as the swab you take.

[music ends]

Emma: Hello, welcome to The Paeds Rounds. We host a regular podcast from the Royal College of Paediatrics and Child Health on key issues affecting paediatric practice. My name is Emma Lin and I'm a consultant paediatrician at the Great North Children's Hospital in Newcastle upon Tyne. I'm here today with my co-host and colleague, Christo Tsilifis, and this is our final episode of three on herpes simplex virus (HSV) and today we're looking to round up our learning from what we've heard before, from Sarah and Dr Hermione Lyall.

So, let's get started with today's round and hear from Dr Katy Fidler, a great friend and colleague of mine who I've known for a very long time. Katy, would you like to introduce yourself?

Katy: Hi, Emma. I'm Katy Fidler, I'm a paediatric infectious disease consultant in Brighton and a reader at Brighton and Sussex Medical School. And, also I currently run the national study on neonatal herpes through the BPSU (British Paediatric Surveillance Unit).

Emma: Katie, what do you want to tell doctors about when to worry about HSV and what to look out?

Katy: Well, and the neonatal HSV can present in one of three different ways: with skin, eye and mouth disease; with a CNS (central nervous system) disease, so encephalitis; or with disseminated disease. And for the first two of these, presentation may be easy to recognise, because they have skin lesions or they may present with fevers and seizures. But it's this last group with disseminated disease that is really, really difficult to recognise, because they present very nonspecific symptoms, of poor feeding, lethargy, they may present with a sepsis picture, but everybody will think they've got bacterial sepsis, and not think about treatable viral sepsis.

Emma: Thanks, Katy. I think the difficulty is that basically babies don't present in many different ways when they either get a fever, or they cry, or parents come in and say they're just not themselves. So, is there any time you shouldn't use acyclovir? Because it seems to me that it will be really hard to unpick beforehand whether this is a HSV infection or not.

Katy: I think that's a very good question Emma, about when you shouldn't use acyclovir. From an infectious disease point of view, we would like to consider HSV and starting acyclovir in pretty much the same way as you do antibiotics, that you start and then you can stop when the cultures are negative antibiotics, or the viral PCR (polymerase chain reaction) tests are negative, but HSV. However, we have to put that into the context of many, many babies presenting to the emergency department and how that would affect 1000s of babies per year.

Emma: I think that brings us back to that reminder, that Hermione talks about, to take a really good history and to talk to the parents. I think the second problem is that we don’t have good point of care tests. So, what we really would love is a point of care tests that will tell us if a child has HSV (herpes simplex virus), when you see them is that slightly sleepy and lethargic, possibly febrile and other moments when to care that don't exist like that. But what tasks can you do, or what tests should you Katy?

Katy: Well, I think the most important thing is to go back one stage, and even before the testing, you have to think of the diagnosis to send off the test. And we've done studies to show that when you ask registrars what diagnoses they consider in an unwell baby presenting in the first week of life, only 3% think of HSV, whereas everybody will think of bacterial sepsis. For instance, everyone thinks of listeria, however, listeria is not nearly as common as HSV in the neonatal population.

Emma: I think that's incredible, because the number of listeria cases in neonatal population is maybe two figures per year, like 10s or 20s.

Katy: Yes, so we know that both junior doctors, and indeed the public, are all very aware of listeria infection, but hardly anybody is aware of herpes simplex infections in neonates and what they can do to reduce their risk of babies getting infected.

Emma: I think that really goes back to that idea that there's such a stigma about herpes simplex virus.

Katy: Yeah, I think there's still a huge stigma around it and it's such a shame because of course, it would turn neonatal herpes into a much more easily treatable disease. Doctors should ask women in pregnancy, and those who are presenting in the emergency department if they have a history of this illness, because we can treat it if we know early enough.

Emma: And it is that horrible combination of being completely stigmatised to talk about genital herpes, and then also disregarding cold sores as anything serious so most people don't bother to treat cold sores, and don’t think that cold sores are in anyway serious.

Katy: Yes, and I think Hermione talked very nicely about what we can do to prevent these infections. And of course, prevention is better than cure, and she talked about the antenatal things we can do. But of course, between 10-25% of these infections are acquired postnatally, and we really need to educate parents and staff in hospitals about the importance of postnatal transmission of herpes from a cold sore lesion or a herpetic whitlow, and providing advice about how not to work with newborns or touch newborns if you have these lesions.

Emma: But what does a herpetic whitlow actually look like?

Katy: Well, it looks almost like blisters, often on the side of your finger, but it can also present like a paronychia, so redness around the nail bed, and it's often confused for a bacterial infection.

Emma: Let’s imagine we live in the world where you could have anything you want. What are the tests that you really dream about if you're concerned about HSV?

Katy: Well, in my dream world, we'd have a point of care test, like we have for COVID these days, to look whether a baby has herpes infection, when they initially present, so we can treat with antivirals at that point.

Emma: But we don’t, so what is our second-best real-world scenario?

Katy: So then we want to think of the diagnosis and take samples from as many sites as possible. Many people think of taking a CSF (cerebrospinal fluid) and sending this for HSV PCR, along with enterovirus and some of the other viral infections. However, we really, really want to catch these babies when they're at the by viraemic stage before the virus is disseminated. And therefore we have to take a blood sample, which is an EDTA (ethylenediaminetetraacetic acid), looking for herpes simplex PCR. So this is not the antibody test, the serum clotted test, which shows your response to herpes, we really want people to send off the viral DNA sample on admission.

Emma: What can you tell me about the kind of swabs we'd like?

Katy: Well, we want the viral swab, which in our hospital is a green swab not a charcoal swab, and it's the same swab of course everybody knows about with COVID these days. And what I would suggest is, any baby with any skin lesions, you may think it's erythema toxicum, you may think it's a staph infection, but please, please send that viral swab as well and you may get a surprise. This means you could start treatment earlier than if you forget that.

Emma: If we were to hit the jackpot and have every investigation that we wished for, that actually exists at the moment, we would like a CFS PCR, we'd like a blood PCR that's in an EDTA tube, and we'd like viral swabs of absolutely everything. So any blisters, any lesions, any redness, and anything that looks like a paronychia, and that swab would be a viral swab, which would be a green swab, not a charcoal bacterial swab.

Christo: Katy, Is there any value in popping blisters to get some of the fluid inside the vesicles?

Katy: Yes, I think we would like to pop the blister and really try and get that green swab into the base of the blister even if it causes a little bit of discomfort for the baby. Your result is only as good as the swab you take.

Well, it's a bugbear of mine that I've been training our juniors about for research studies, on the meningococcal disease, to doing COVID swabs. You don't get your swab to the back of the throat, or in this case to the base of the lesion, a negative result does not necessarily mean anything.

Emma: Katy, going back to our investigations. Remember, this is a baby who doesn't necessarily have a fever, who may look just a bit sleepy. We've talked about what investigations we'd like to try and isolate the virus, but what other tests would you like to do?

Katy: The tests that are very helpful would be the CRP (C-reactive protein) and that's usually low in herpes simplex virus, liver function tests because once your ALTs (alanine aminotransferase) start to rise, your risk of mortality increases significantly, and clotting because again, this can go off in these babies.

Emma: Okay, so we have a list of all the investigations would like. Do we need to talk about treatment?

Katy: I'd love to talk about treatment. I think it's very difficult, and a contentious area at the moment, because infectious disease doctors would like to treat all babies with acyclovir. It's relatively well tolerated; however, it does cause problems with the cannula and the veins, and the cannula tissuing.

Emma: So, although we like vitamin A and acyclovir, we'd like to give it to everybody, it’s a bit like thinking about antimicrobial stewardship, and we need to think who needs to have it. Or we could start it on more children and then stop it if we've done the right investigation. I agree with you, it's always difficult to give, we always struggle with cannulas, and I don't think I have a good answer for that.

Katy: I think any baby in which mum has any history of herpes illness at all we would treat. Any baby who is unwell with nonspecific signs of infection, or sepsis, it would be good to treat. And certainly, any baby who has abnormal liver function tests, or deranged coagulopathy, or who is not getting better after 24 to 48 hours of IV antibiotics.

Emma: And I think you were particularly interested in babies who are under 16 days old, in the first few weeks of life?

Katy: Yes, so we're conducting a national study at the moment and it does seem that the median age presentation with disseminated disease is about six days; with skin, eye and mouth it's eight days; and with encephalitis it’s ten days.

Christo: We worry a lot about antimicrobial resistance, do we need to be concerned about acyclovir resistance in HSV?

Katy: We're lucky at the moment that we don't seem to see acyclovir resistance very often in women who are treated or children who are treated with acyclovir.

Emma: We're still standing! I'm going to give you five minutes to tell us about the BPSU study that you have just recently finished, o that is the British Paediatric Surveillance Unit, which we were just talking about a bit earlier.

Katy: Yes, so this is a study we've been running over the last couple of years, where we look at all anonymous cases of neonatal herpes in the first few months of life in the UK and Ireland. We have interim results to date, the study is not fully concluded yet, but we have found most importantly, that the incidence of neonatal herpes infection has doubled again since the last study that Sarah mentioned that was undertaken about 20 years ago.

Emma: So that means I have to talk to you again, another excuse to come and meet up!

And finally, thank you so much for being with us, Katy, and for the enormous amount of work you've done in this area. And I think it's such an important area because of the lack of recognition and awareness of the horrible disease and the possibility that it could be avoided through a few questions and maternal prophylaxis.

So, do you have three top tips that you'd like to share with our listeners?

Katy: Three top tips are really that antenatal transmission can be reduced, as discussed by Hermione. Postnatal transmission will be reduced by good hygiene and not touching babies if you have a cold sore or a herpetic whitlow. And lastly, we can reduce mortality if a baby does get infected, by treating them early with acyclovir, the key to this is really thinking of HSV as a possible diagnosis.

As you know, Emma I've been badgering you for years to talk about treatable causes viral sepsis, as well as bacterial sepsis. And I think everybody thinks for things like enterovirus, and RSV (respiratory syncytial virus), and viruses that you can't really give specific treatments to, you just have supportive care. But herpes simplex is one of those viruses that you can completely alter the course of the disease if you treat these babies early and mustn’t be forgotten.

Emma: Thank you, Katie. It's the day of the virus, your time has come! I really appreciate it and it's been great fun to talk to you all and we probably should make a date to come and chat again once you've got all the results from the BPSU study.

Katy: Thank you. Thank you very much for having me on your podcast.

Emma: Thank you very much Katie that’s amazing and as always we add all our links on our show notes. For guidelines under management please look for the paediatric and microbial stewardship group. This can be found at: https://uk/pas.co.uk At the time of our recording the guidelines for the treatment of HSV were being updated. The general consensus among the UK paediatric antimicrobial stewardship network is based on Dr Fidler’s current BPSU data. The UK PAS guidelines for neonatal herpes simplex have now been updated. It is recommended for acyclovir to be used in the treatment of neonates with suspected sepsis and any of the following features:

ALT or AST greater than 2 times the upper limit of normal or abnormal liver function tests

Coagulopathy

Vesicles

Seizures

CSF Pleocytosis

Suspected Meningitis of Encephalitis

Recent maternal HSV disease

Post-Natal contact with HSV

The recommendations also strongly recommend considering acyclovir in neonates who present on days 3-14 with one of the following, in the absence of the above risk factors:

No obvious cause

Not improving

Or unexplained maternal, febrile illness peripartum to 14 days postpartum, especially if premature. Thanks you very much I hope you enjoyed the episode

[music]

This podcast is a collaboration between Medisense, medical education and the Royal College of Paediatrics and Child Health. You can find more creative learning resources on www.medisense.org.uk and of course a wealth of information on the important work of RCPCH on www.rcpch.ac.uk or #ChoosePaediatrics.

[music ends]

Emma: The views, thoughts and opinions expressed in this podcast relates only to the speaker and not necessarily to their employer, organisation, the Royal College of Paediatrics and Child Health, or any other group or individual.

[music, with snippets]
Liz: Common things are common. And you get to recognise things that are uncommon
and need different attention, so seeing lots of children with viral infections while is
annoying at three o'clock in the morning, makes you a better doctor.
Christo: It's not a case of not wanting to prescribe antibiotics. It's about wanting to do the
best thing for the child in front of us.
Emma: Part of what we do in medicine is explain and reassure, that is actually harder
than giving out pills or giving out medicine. And that is the art of being a paediatrician.
[music ends]
Emma: Hello, everyone, and welcome to The Paeds Round, your regular podcast from the
Royal College of Paediatrics and Child Health. My name is Emma Lim, I'm a consultant
paediatrician at the Great North Children's Hospital in Newcastle upon Tyne. Together
with our guests, we'll dive into some of the hottest issues affecting our specialty. We'll try
and bring you insights from paediatric experts and round up some of the key learning
points for your practice along the way. So, let's get started with our Paeds Round!
It's the beginning of the new year, and I thought it would be really interesting to talk
about one of my favourite bacteria, group A streptococcus. And so to help me because we
always need help from experts. I have Liz Whittaker here to talk to us.
Liz: So I am Liz Whittaker. I'm a paediatric infectious diseases consultant in London and
an academic at Imperial College, and I am the convener of the British Paediatric Allergy,
Immunity and Infection Group (BPAIIG), which is why I ended up talking at a lot of these
things.
Emma: Liz is one of my ‘phone a friend’ people, so when I’m horribly stuck, she’s one of
the people who is A very nice, and B knows all the answers.
Liz: I actually know all the people who know the answers, I think that's the key.
Emma: I also have my sidekick to keep me on the straight and narrow, Christo.
Christo: Morning. My name is Christo, I'm a research fellow in Newcastle working with
Emma currently doing a PhD in paediatric immunology.
Emma: So, let's dive straight in. One of the things that I always think about with bacteria,
people seem to think that bacteria are bad, but actually bacteria live on our skin and in
our throat all the time and don't really cause as many problems. So, what I'm really talking
about is commensals. Liz, can you talk a bit about group A streptococcus, what it is and
carriage rates.
Liz: Group A streptococcus is a member of the Streptococcaceae family, and we learnt
about this in med school, and I remember spending a lot of time on streptococcal and
staphylococcal bacteria in microbiology. And I've got to be honest, at the time, it didn't
make any sense. But subsequently, both as a junior doctor and then as a consultant, I've
realised how important both of these wonderful pathogens are. So, they're not just
pathogens, we are covered in bacteria. It's really important for our immune tolerance and
our development of our T cell responses and our ability to recognise foreign from not, and
in particular, our pathogen recognition receptors. And so, we are covered from head to
toe in not just by bacteria, but also viruses as well. We have a biome and microbiome,
which is both bacteria and viruses, and carriage rates are surprisingly high. So, we have
this problem, and this is one of the reasons why diagnostics become slightly challenging,
particularly in this context, is that many people carry streptococcal bacteria at the back of
their throat without causing them any harm at all. And so it's really difficult to say just
because you found something on a throat swab or in a rapid test, that it's causing a
problem. You have to take it in the context of how the child is clinically presenting as well.
Emma: Thank you. I mean, I think that says it all so clearly, that lots of people have strep,
but it only causes disease in some people. And even those people that might cause minor
disease and very, very few get seriously ill.
Christo: Liz, is this why rapid antigen testing isn't recommended by NICE (The National
Institute for Health and Care Excellence)?
Liz: This is almost exactly why rapid antigen testing hasn't been adopted in our setting.
And it's interesting, lot of people say ‘Oh, but it's used all across the United States and
Canada and Germany’. They have a very different healthcare system structure as well
though and they are used in the context of clinical scoring systems and not just as a tool
by themselves. But we know that if you treated every child who had a positive rapid
antigen test with antibiotics, you'd probably be overtreating by between 90 and 95% of
those children. And that's a lot of antibiotic that's not needed. So, we should try and avoid
that.
Emma: Absolutely, they are my favourite words, ‘avoid antibiotics’. Let's say we have
people where bacteria just sit on their throats and they don't do anything, but we see a lot
of children with sore throats. That is a really common presentation. So how do we pick
apart those with just viral illnesses from those with strep throat?
Liz: That's such a good question, and there are a number of scoring systems that have
been developed and really validated in adults, if we're honest, with some data in children.
So the Centor scoring system with a feverPAIN scoring system are the ones that we use,
and usually in children over the age of three. But as a general rule, if they're full of snot,
and they're coughing and spluttering, classic virally looking rash, and they've got a sore
throat with that, that's probably going to be a viral infection. This is where, as you get
more senior it's easier, you learn to trust what you know. And this is why we make you go
to A&E to see lots of patients, because common things are common, and you get to
recognise things that are uncommon and need different attention. So, seeing lots of
children with viral affection for us annoying at three o'clock in the morning, makes you a
better doctor.
Christo: Those scoring systems that you've mentioned Liz are really helpful for trying to
pick apart viral versus bacterial tonsillitis and sore throat, but do you think every bacterial
or likely bacterial tonsillitis requires antibiotics?
Liz: That is such a good question and no, I don't think they do. The vast majority of
tonsillitis is self-limiting. There is lovely evidence showing that antibiotics might reduce
your symptoms by maybe a day, but not much more than that. And actually, when we go
back to that immune question before, having repeated episodes does help you to develop
protective immunity against some of these infections, provided they stay mild and allow
your immune system to develop the way that it should. Because although we don't have
a vaccine against group A strep, and so protective immunity is a little bit elusive, we don't
continue seeing tonsillitis and group A strep infections throughout childhood. At some
point people develop the right kind of immunity that stops them from getting ongoing
tonsillitis.
Emma: I think that's so important. I'm always saying to parents, when they bring us snotty
children, there is a plus side to this. This is going to help your child develop a good
immune system. And I think that's really vital.
Going back to talking about antibiotics, number one we just shouldn't prescribe. Number
two, even if we do prescribe them, as you said, it might only shorten the course of the
illness, not even do it much else. But I think it's really important to think how we give
antibiotics. You know, we're a big fan of pill swallowing. And I'm very keen that people
don't give 10 days of oral penicillin. Have you tried giving oral penicillin four times a day to
a struggling toddler? And there are lots of other better options.
Liz: Absolutely, I couldn't agree more. I think there's a great opportunity here whilst the
stage is looking at antibiotics, to do a bit of education for parents in particular, but also
those who work in primary care and in frontline settings who prescribe the bulk of this
kind of antibiotics, to say that we should be encouraging children from the age of five,
maybe younger, if they’re on it, and to try and swallow pills. I have to confess, my children
have been very lucky and haven’t had many illnesses in their life and I taught my nine
year old to swallow Tic Tacs over Christmas because I was so embarrassed that it had
never come up before! But I realised that it just hadn’t been on my agenda of things that
we need to do, we need to make that part of parenting, that actually over time you teach
them to ride a bike, you need to teach them to swallow a tablet, it’s part of growing up.
Christo: On the topic of antibiotics. What are the kind of good alternatives to penicillin
be?
Liz: One of the things that was extraordinary in December of this year (2022) was the big
media coverage of antibiotic shortages, which I think was very alarming for both parents
and clinicians. And a rapid protocol was developed to allow pharmacists to give good
alternatives. So actually, I was involved in some of those meetings. We've talked about this
a lot. So first line recommendations are amoxicillin, very palatable for children and
penicillin. After that, the other options are things like macrolides, although we have to
remember there's between 8-11% resistance to streptococcal infections from macrolides
and that is from azithromycin and clarithromycin, augmentin, but again, it's quite broad
spectrum and is more associated with GI (gastrointestinal system) side effects so that
wouldn't be top of our list. And we have Keflex, very underused antibiotic but actually very
effective and quite palatable. And then we have things like Septrin which was what we
got when I was a child, and but kind of has gone out of vogue a little bit but is a really
good alternative as well. And so I think there are lots of options. Currently until things
change, you can just write penicillin on the prescription and your amazing pharmacist will
choose an option if they do not have what you want available for them, including
probably Amoxil quite high up there.
Emma: And this is one of my huge bugbears, is that people don't understand when they
get antibiotics, antibiotics have side effects. And you mentioned GI, gastrointestinal side
effects, so when you have an antibiotic, it doesn't just kill the bacteria in your throat, it kills
all the healthy bacteria in your gut and you get a bit of diarrhoea, it does not mean that
you are allergic to that antibiotic. All medicines have side effects and that's why they
should only be prescribed with caution.
Christo: I think this is really important to communicate across to parents and families
when we're counselling them and safety netting, that it's not a case of not wanting to
prescribe antibiotics. It's about wanting to do the best thing for the child in front of us.
And if the potential side effects are going to cause more distress, and add, say diarrhoea
on top of a child who's snotty and miserable, then foregoing antibiotics might be the
better choice for that child. It's just sometimes difficult to be able to communicate that
when you’ve got parents who are stressed or tired, and you're busy in the GP surgery or in
A&E.
Liz: And they just want their child to get better, Christo. So yeah, I think I'm slightly
worried that with all these children with viral infections who are given antibiotic,s that
they will go through the normal history of a viral infection and develop a maculopapular
rash, which is self-limiting, but that that will be labelled as an allergy. And what I also
think that as clinicians both in primary care, but also in A&E, that we can say to parents
that doesn't look like an allergy so they don't get labelled as having an allergy for the
future.
I also think that the important thing about not giving antibiotics is to give parents the
decision-making ability about when to come back, because although the vast, vast, vast,
vast majority of these children will get better and not need more medical attention, a
teeny tiny subset might get severely unwell, and the safety netting advice and that ability
to give that decision making to parents is so important, as part of our job.
Emma: Thank you Liz, thank you Christo. I think this is such an important thing. I think
part of what we do in medicine is lean or reassure, and that is actually harder than giving
out pills and giving out medicine. That is the art of being a paediatrician.
[music]
Emma: Obviously, we've talked about strep throat, but group A strep can cause more
significant illnesses. And one of those is scarlet fever, which actually used to be really
common.
Liz: It was, and also in Victorian times, and you read about in literature, don't you? It's so
fascinating, and Little Women is my go to book for scarlet fever and rheumatic fever
education! So, scarlet Fever is something that we probably need to think about a bit more
seriously. Interestingly, probably most people get better from scarlet fever without
treatment, without any sequelae, but it is slightly more likely to be associated with
complications. So at the moment, the recommendation is that we would treat it, however,
fever and a rash is probably the second most common thing that you're going to see in
primary care, A&E. So understanding how to recognise scarlet fever is quite important.
So, children with scarlet fever develop a flu like feeling with headaches, high fevers and
sore throat, and then the following day or the day after that will develop a very red rash.
And very interestingly, and very importantly, it doesn't always look red at all skin types.
But the fascinating thing is, you can feel it, people say sandpaper, it's rough skin, and it's
kind of all over the body. It starts on the trunk and then it can also spread upwards. That's
different to other rashes that might look similar, like measles, and we're a bit worried
about measles vaccination uptake for preschoolers, so you do need to know what measles
looks like; starts on the face and spreads down. So just remembering to take a history, not
only of where the rash started and what it looked like, but how it progressed over several
days, will help you to make that diagnosis.
Emma: That's so funny, Little Women. I totally think you’re Jo!
I think that's a really good point about rashes. We see a lot of rashes. The first thing I
always think about is take your history is the child actually ill with the rash, because so
often it's really minor and they're not ill and therefore they don’t have scarlet fever.
Children with measles have really red eyes and they're incredibly unwell. And people
aren't really used to seeing it here because it's so rare, they’re much more unwell than you
would expect. And then the last thing I think we need to mention because I always get
this, I get this quite a lot, is EBV (Epstein-Barr Virus). So, the teenagers who turned up with
a sore throat and a rash!
Liz: This the other thing I was thinking of when I mentioned antibiotic rashes earlier. So
EBV in its own right actually gives about 10% of kids a rash which I think people don't
realise and they'll often have a few and they’ll be quite fatigued, and they might often
have lymph node involvement, so they'll have palpable lymph node somewhere and the
rash is much more maculopapular and not palpable in the same way that the scarlet
fever rashes and we are likely to see the kind of post antibiotic EBV amoxil related rashes,
that timing of rash onset is also going to be really important to this cohort. And EBV is a
common virus.
Emma: So Epstein Barr Virus, glandular fever, I always think, again it's going back to the
history, this is often in older children, they have a slightly different history. And the other
thing is, I get this question all the time in the emergency department, people say, ‘Oh,
maybe I shouldn't give Amoxil because I don't know if this is EBV’, but the incidence of
amoxicillin driven rash in EBD is actually relatively small. And if you take a good history,
and then if they're much older and you think it's EBV, but in young children EBV causes a
very minor kind of viral illness. So it is all about going back to the history again,
Christo: I think when we're talking about rashes, and Liz you mentioned this, it is really
important to recognise that a lot of the textbook descriptions describe how rashes look
on white or Caucasian skin. And I think this would be a really useful opportunity to
signpost some resources for how different rashes might look in people who don't have
white skin, and there are various websites such as brownskinmatters which provide
reference photos, as well as the ever trusty dermnetNZ.
Emma: You can also use Don’t Forget the Bubbles who have produced a whole section on
rashes in non-white skin.
The other thing I think we forget about Liz, I worked in lots of other countries, in the South
Pacific, in New Zealand, and actually there we hardly ever saw sore throats but we saw
lots and lots of skin infections and pustules, impetigo also caused by group A strep.
Liz: Yes. So this goes on to the other end of the spectrum of streptococcal and
staphylococcal infections, which cause all sorts of skin infection and can cause all sorts of
problems, so folliculitis, cellulitis, really worrying things like necrotizing fasciitis, that
people just need to have at the back of their mind. And actually, this is really important in
the context of chickenpox, and so we know that a really strongly recognised association
between varicella or chickenpox infections and subsequent group A strep infections, both
cellulitis and then more worryingly, necrotizing fasciitis, which is an extremely painful, just
remember indurated, looks very tender, is very tender spreads very rapidly, bright red skin
infection and doesn't respond to antibiotics. So this is the reason why when you’re a
trainee people have got you to draw around red lines, literally for necrotizing fasciitis. So,
just to be aware of that, and that is a type of invasive group A strep that can become very
serious, very quickly and is a skin emergency. It needs plastic surgery, and debridement,
and broad spectrum antibiotics including potentially cataracts zone and a toxin killing
bacteria antibiotic, such as clindamycin or linezolid.
Emma: Oh Liz, so many pals in one paragraph! So as always, because we're in infectious
disease, we can't actually make a diagnosis, unless you do some tests, so it's all about
seeing children, thinking about what it could be and taking some swabs. So, what are the
samples that people don't do that you want to do?
Liz: That's very good. Well, there is a balance. Not every child who comes in with
something needs a swab. If they're being admitted, or if you're giving them treatment for
a rash, that’s when we want you to do a swab. And we want to have swap at the site,
anything that’s wet basically, you can swab anything that's wet or looks nasty. But also
can you send your MRSA (methicillin-resistant staphylococcus aureus) screen at the
admission so that if they're not responding after 48 hours, we have a result and know
whether to escalate to things like vancomycin, t’s really annoyingly when you don’t have
that. But it's good to send groin, anywhere gooey, groin, axilla, neck swabs, and a throat
swab will also tell us what kind of commensals are around that we might want to take
into consideration for a child who is deteriorating.
Emma: I also ask people to do viral swabs at the same time because of course if they're
wrong, and it's not strep, and in fact you send a rapid viral screen and it comes back as flu
A you've got your answer and you don’t need to give antibiotics.
Christo: Liz, the bacterial swabs have another role more than just guiding management
for that patient because they have a role in surveillance. Is that right?
Liz: Yes, that is such a good point, Christo. So, a lot of what we knew for this outbreak
going into November and December came from three places. One was scarlet fever
notifications, which is GPS and doctors mainly who tell Public Health England, it’s a
notifiable disease and they have an obligation to tell people if they've made that
diagnosis. One is from invasive group A strep notifications. But the third one is
surveillance, which is done in a number of laboratories across the country, where they
look at the level of positivity of throat swabs for group A step for example, but also as, as
Emma mentioned, positivity in sterile sites, that will include things like empyema fluid,
lumbar puncture fluid, etc, etc.
Emma: And that's where sending these notifications and that recent information, that's
where we notice this early rise in invasive group A strep.
So, do you want to tell us a little bit about how it happened and what we should look out
for?
Liz: Interesting, it actually all happened way longer ago than anyone remembers. I’m
going to give a bit of context, it's going to be a slightly long answer warning for those with
a shorter attention span.
So we had seriously high waves of group A strep every spring from 2014 to 2020. And then
in 2020, everyone started washing their hands (what were they doing before?) and
wearing masks, behaving differently and group A strep really went away in very dramatic
fashion for two years. And then it reemerged really late in the season, so early summer
last year, and there was an actual alert from UK in July, to say that they were worried they
were seeing quite high cases of your group A strep at that time using the surveillance
that we've already mentioned. And that settled down in the summer holidays when
everybody washed their hands again, apparently, and then it came back again in the
autumn when the children went back to school. And this is unsurprising. Children are the
ones who get these infections and they pass it around amongst themselves. And so in the
autumn, cases of positive throat swabs and invasive group A strep increased at an
unseasonable time of the year, leading to the outbreak that was slightly unexpected in
November, December.
Emma: That's really interesting. And it makes me feel better because often I say to
families when they come with their snotty miserable children, you don't need antibiotics,
actually what you need is hand washing, cough hygiene which means wash your hands
before meals, cough into your elbow, if you sneeze into a tissue throw it away! Do not stick
it up your sleeve! You should kill it, bin it.
Liz: Yes and it's very interesting. I think we just need to clarify a few things about the
actual notifications of what actually has happened in the last few months because I think
the perception if you are somebody who just read mainstream media, is that the death
rate is massive, there's loads of this really severe end of the spectrum invasive group A
strep and it's all a bit of a disaster zone. Actually, although cases have been higher than
expected at this time of the year, the proportion of serious cases and tragic death in
invasive group A strep is completely in proportion, in fact it may be slightly low compared
to the mild and self-limiting illness. So it is just that it's happening at an unusual time of
the year, rather than it's a disaster zone and that we need to really worry about this
particular pathogen. It’s just the wrong time.
Emma: Perfect. And that kind of brings us around to the fact that occasionally, group A
strep does cause serious invasive infections. But these are very varied. And it kind of
brings me around to my general message, which is: do people know how to recognise
really sick children?
So Liz, do you want to talk a bit about the range of invasive group A strep infections that
can affect children and why are we really scared of them as a paediatrician?
Liz: So invasive group A step is a devastating illness, I'm not going to sugarcoat that and it
is rare, but we do need to know what it means. So what that means is that the
streptococcal bacteria has managed to get through our barriers of the skin or the
mucosa, and into a site where it isn't normally found. And we do see, as I've mentioned
already, chickenpox because you've broken down the skin barrier. It also can be seen after
flu, that's very well recognised when your mucosa is all inflamed, and the bugs can get in.
And then I think this autumn we've recognised that other viral infections that cause
mucosal damage can allow the bacteria to get in as well. And so we can see meningitis,
we can see sepsis, we can see empyema and pleural effusions. We see necrotizing fasciitis
from the skin. We also see osteomyelitis and septic arthritis, and all of these are actually
surprisingly hard to treat, they take quite a long course of antibiotics.
But the thing that as a frontline worker you need to know is, they get very sick very
quickly, and that's why it's so devastating. So you might see a child who has a viral
infection on one day and within 24 to 48 hours, they've become very septic very quickly
and that's where the safety netting and telling parents when to come back is the most
important part of your job.
Emma: Absolutely, I couldn't agree more and I think that it is hard to understand how
quickly that happens. So I think Matt Thomas here in Newcastle did some really nice work
showed that empyema from group A strep can actually appear within 12 to 24 hours. So
really, really quickly. The point about safety netting is my be-all and end-all because it's
rarely difficult to think that actually you're seeing a child at one point in time, so you have
no idea whether they're going to get better or worse after you leave that room. The only
person who can judge that is the parents, and therefore they need to know what to look
out for, when to come and get help and where to get help. And that doesn't mean that
everybody should come to the emergency department. It may mean that you can safely
self-care home, and I'm going to do a huge plug for our healthier together. website
because I think that it has got a really clear red, amber, green rating for parents so that
they can look at their children with coughs or colds or fevers, know where and when to
get the right treatment.
Christo: With regards to treatment of invasive group A strep, what are some of the
differences above and beyond the usual care that you provide to a sick child so, fluids,
senior review and so on.
Liz: So these children are likely to come into A&E being very tachycardic, very hot,
tachypnoeic. So all those things that we hopefully trained you to recognise as red flags,
and they need good access. We really want you to get good samples of these children
before they get antibiotics, so blood cultures and throat swabs, but absolutely the blood
culture. Early antibiotics was broad spectrum, so we use BLANK, but look at your local
guidelines. And the thing that's key if you're particularly worried about group A strep or if
there's any profound erythema or redness anywhere, is to add in something that has an
anti-toxin effect and the first line is clindamycin, and that's why we add it. It can be
stopped if we find another diagnosis, but what it does is it stops the bacteria making
more toxin and it's often the toxin that drives the really devastating, rapid process. So the
clindamycin is really important here,
Christo: Along with antibiotics, is there a role for intravenous immunoglobulin and what
are the limitations around this?
Liz: This is a really interesting point. So intravenous immunoglobulin is magic, a little bit.
What it does is it mops up that toxin that we were just talking about, and it may have a
role, but it should be following discussion with your local tertiary infectious diseases
service. It's not going to be appropriate for every child. It is a rare commodity and it is a
big load of fluid, and that that may not be helpful if you're somebody who's in shock
where fluid management can be quite tricky. And so, the children need first line
supportive care, so small fluid boluses if you're needing more than 20 or 30ml per kilo, you
absolutely need to escalate to your transport services or to your intensive care unit for
advice. Consider early inotropes, which they will give you advice about those drugs that
help with blood pressure, making sure we're monitoring really closely input and output
and considering catheterization. And all of those basic tools of looking after a very sick
child, which you should be supported with, there are extremely good support systems in
our setting. So do reach out and ask for help.
Emma: I think that the thing to remember for invasive group A strep, it's like any serious
disease, if you can recognise it early, then you're more likely to be able to treat it and get a
better outcome. Treatment like the big study from New York, treatment bundles to sepsis
includes fluids, but just sufficient fluid, so 10ml per kilo boluses, always reassessing to look
if they’re overloaded, giving antibiotics early, thinking about whether you need
clindamycin, thinking about giving inotropes early, much earlier than we would have
before, so, after about 40ml per kilo. And the most important thing of all, which Liz said
very nicely, is get help. You are never there alone. Who is your local transport service? Is
there an anaesthetist in your trust? Do you have intensive care? Don't do this alone. You
need help in this situation.
[music]
Emma: We've talked about recognising very serious invasive with group A strep, but I just
want to add in what about contact facing and treating contacts?
Liz: Thank thanks so much for bringing that up, Emma. This is really crucial.
So, group A strep has a very high second attack rate, which means that other people
within the household are at risk of becoming unwell. And so about one in five of those in
the household may develop an infection, and actually can be more seriously unwell than
the person who presented in the first place, particularly if they're vulnerable. The
vulnerable people are pregnant women or those who have recently given birth, neonates,
the elderly, particularly those over 75 And anybody who's immunocompromised. And
actually, what you're meant to do is report it to your local health protection team, who can
then organise prophylaxis. What I would ask you to do, is if this child comes into your A&E
department at six o'clock in the evening, that you just find a way to give antibiotics to a
vulnerable person there and then, because actually the health protection team won’t get
onto the case until the following morning and these second cases can often occur within
24 hours. So, this is where trying to get appropriate prophylactic antibiotics, that can just
be penicillin, but there are very clear guidelines on this that can be lifesaving.
Emma: Yes, absolutely. And we've had cases like that where if a child is brought in and
they die, the last thing you need is for their grandparents, or their siblings, or their
pregnant mother to get sick as well. So, it's so important and really easy to forget, because
actually we're not good at asking who else is living in the family? What are their names?
What are their dates of births? I just want to make a really quick point. Liz, what is a
household contact?
Liz: Household contact is somebody who lives in the house, and spends a large amount of
time with the person. So, we would say probably more than eight hours in the last 24
hours would be a significant amount of contact. And so around Christmas, it's easy,
they've spent all Christmas day in your house, but they went home to sleep somewhere
else. They are still a household contact because they spent the whole of Christmas day in
your house.
Emma: Don't worry about the school and the class, that will be somebody else's job, but it
is your job to contact public health and for them to trace and sort out that. You're just
doing those immediate family contacts.
Liz: If you want to notify a case of scarlet fever or invasive group A strep, please contact
your local health protection team whose details you can find on the gov.uk website.
Emma: Last of all, so we've been the whole way round from having group A strep as a
commensals, sitting on your skin doing nothing, to causing really invasive disease. But
actually group A strep, it's like a party with a hangover because you can have post
infectious complications. Just when you think everything has got better, something else
happens. So do you want to tell us a bit about the post infectious complications?
Liz: Yes, thank you. So, this is what was really fascinating at med school, I thought. So post
streptococcal complications are actually quite rare, and we were worried and we are
going to do some surveillance to see if we see more of them after this outbreak. But
actually after the big outbreak in 2017/18 it doesn't appear that there was a big increase in
them.
So the most common or the one that you will most likely see is post streptococcal
glomerulonephritis, and this is the child who presents 5 to 10 days after a sore throat or an
episode scarlet fever with blood in the urine, in essence. And these children need the
usual renal monitoring with blood pressure and urine analysis.
After that, we have rheumatic fever, and I'll give a fiver to anyone who can tell me without
googling the Jones criteria, I look them up every time. This is a combination of carditis
and arthritis, so bone and heart involvement. And there are strict criteria there. You have
to identify strep, so you have a positive throat swab or a positive ASO (antistreptolysin O
titer) that's very high, that you have changes on an echocardiogram or an ECG
(electrocardiogram), and that you have met some criteria in terms of the joint
involvement. This is really rare in our assessing actually, which is good. It is much more
common in low and middle income countries ,where presumably, we think that there's a
lot more general exposure to streptococcal infections than we see, which is then never
treated. But it is an important one to pick up because if not managed well it can result in
damage to the valves of the heart.
And then we also see something called Sydenham’s chorea, and this is worth looking up
on video. So lovely videos of the type of unusual movements that are chorea, which is
often writhing or gripping and grasping and again, this need management with between
rheumatology, neurology and infectious diseases. And the reason all of these are
important is that these children may need to go on to preventative doses of antibiotics for
a period afterwards, discussed with your local IDT (Inter-Deanery Transfers).
Emma: Fascinating Liz, it's really interesting that it's so rare and wasn't a huge spike after
the last lot of complications. One of the things I wanted to say was, if you give antibiotics,
although that reduces the incidence of rheumatic fever, there is no evidence that it
reduces the other complications, you can still get those. So I think that's another reason
not to give loads and loads of antibiotics.
As you say, all these things are rare. I do see a bit of post streptococcal or post infectious
arthritis, juvenile arthritis. And these are children who have red swollen joints for more
than six weeks, need high dose ibuprofen and when you stop it, the symptoms come
back. I do send those to the rheumatologist and that's a little bit more common, but they
don't have the full rheumatic fever criteria. So I see that a little bit more often.
Liz: A little interesting point about the arthritis and arthralgia with streptococcal infection,
it is very sensitive to aspirin and nonsteroidals where the arthritis, due to juvenile
idiopathic arthritis, tends not to respond to it. So, it's always worth a trial of a good dose of
ibuprofen or even naproxen for these children as part of that trying to understand what's
going on.
Christo: Liz, you mentioned measuring antistreptolysin O titre, what are some of the
limitations with this? Because I think it's something that if you try and read about there's
often a lot of conflicts about how useful it is in day-to-day clinical practice.
Liz: I should never have mentioned it. So antistreptolysin O titre is an antibody response
to having streptococcal infections, and we told you this is really common. And actually if
you took a poll of children, a huge number of them would have a positive ASOT, and it
comes in ranges depending on how much of it is around and how much you have to
dilute the sample in order to find it. And so we would tend to see children who have a
range of 200 to 800, relatively commonly. If you've had a very severe or very recent
infection, your titre is more likely to be above 1200 or even up to 3600. So that's the kind of
range where we would consider that to be significant, but I agree as a kind of screening
tool it’s not very useful. You have to take us in the context of the child and the history they
have presented with, and what your question is. You can't just do it, you have to know
what you're asking about.
Christo: I hate the ASOT because it’s always sent by people who don’t have to look at the
result.
Liz: I was going say though that we just audited ASOT, and got all the ASOTs that were
sent into the trust in under 21 year olds, and that positivity rate is ridiculous. All like 200 to
400, the most useless test on the planet.
Emma: It's been so nice talking to, really enjoyable and so informative. It’s really, really
brought things into focus in a very succinct and efficient way.
At the end of these podcasts, we give you the chance to give us your three top tips, like
desert island where you can only share three messages.
Liz: So remember, you should behave the way you behaved at any other time when you
saw a child in A&E, and your behaviour should not change just because of differences in
reporting of a bug in the media. Whether that is group A strep or something else, the
child needs an assessment to see if they're septic. They need reassurance if they don't
need antibiotics, and they need good safety netting on the way home.
Emma: Christo, do you want some top tips as well? You're looking very cheerful this
morning!
Christo: I think my take home messages from discussing group A strep is that there is a
difference between being colonised with group A strep and having group A strep
infection. Working based on swabs alone can sometimes be difficult and so you'd have to
take the child in front of you, rely on messages you get from parents or carers about how
worried they are about their child.
When it comes to treatment, ignoring patients with invasive group A strep who need
rapid, prompt, broad spectrum antibiotics, and treatment for most of the manifestations
of group A strep might reduce them to duration by a couple of days but comes with the
potential risk of side effects and so you have to make a balanced decision for each patient
in front of you.
Emma: Perfect! I think I’m going to give myself three top tips because I like the last word.
First of all, don't give antibiotics unless you really need to. If you need to give antibiotics I
want to give a huge plug to the UK Paediatric Antimicrobial Stewardship group who have
really good guidelines for prescribing antibiotics in different situations.
If you are going to give antibiotics, can this be done by swallowing pills? Please look at our
pills following podcasts and kids medz information. If this child is over five, why haven’t
they learnt this skill for life?
And last of all, this is for everybody, always safety netting. Safety netting is vital, you only
see a child at one point in time. How are the parents going to recognise if they get worse
and what do they do? I give a huge plug to the healthier together national network.
Enormous large work by Sanjay Patel and Wessex. But it's all the way across the country.
South Yorkshire has a brilliant site, so in northeast Cumberland also. So do you have the
local healthier together website where you can directly text the parent the right
information at the right time?
So, it just leaves me to say a huge thanks, Liz. Absolute pleasure. We might even ask you
again!
Liz: Thanks so much. I really enjoyed myself. Thank you.
[music]
This podcast is a collaboration between Medisense, medical education and the Royal
College of Paediatrics and Child Health. You can find more creative learning resources on
www.medisense.org.uk and of course a wealth of information on the important work of
RCPCH on www.rcpch.ac.uk or #ChoosePaediatrics.
[music ends]
Emma: The views, thoughts and opinions expressed in this podcast relates only to the
speaker and not necessarily to their employer, organisation, the Royal College of
Paediatrics and Child Health, or any other group or individual.

[music, with snippets]

Sanjay: The Healthier Together programme is not just a website. It's an ethos about how we take those professionals on a journey with us.

Emma: And it's taking away that awful worry that you're missing the serious illness.

Sanjay: This isn't about illness this is about maintaining health. This is about advocating for prevention and early interventions.

[music ends]

Emma: Hello, welcome to The Paeds Round. The Paeds Round is a regular podcast from the Royal College of Paediatrics and Child Health, and we touch on important topics in paediatrics, and we aim to bring you up to date and talk about relevant educational points for your practice. In this episode of the Paeds Round, my name is Emma Lim and I'm a paediatric consultant in the north of England in Newcastle upon Tyne, and I'm here with my trusty sidekick Christo Tsilifis. Do you want to say hi Christo?

Christo: Hi, my name is Christo and I'm a paediatric trainee working with Emma at Newcastle.

Emma: And it's my very great pleasure to have the fabulous guests with me today. It's one of my dearest and oldest friends Sanjay Patel.

Sanjay: I'm a paediatric infectious diseases consultant based out in Southampton, and Emma and I have known each other for about 15 or 20 years having worked together in London many years ago.

Emma: So, Sanjay and I have been working on something that I am really passionate about, and it's called Healthier Together. And for me, I think the secret to this is I really believe that knowledge is power and that sharing information and sharing health information in an equal way, so that everybody gets to know as much as possible, is the key to this. But at first sight Healthier Together is a website about health information for children and babies, maternity, and young people. Sanjay, how would you describe Healthier Together?

Sanjay: That's a really good question, Emma. And I think at first sight people do think it's just a website. And yeah, I called the programme the Healthier Together programme as opposed to the Healthier Together website because actually, what it's trying to do is empower parents and young people and pregnant women. And the reason we set out on this journey over 10 years ago, was just a simple observation that a lot of parents bring their children to the attention of a healthcare professionals because they're worried about their child. When you look at kind of rates of pathology in children compared to say the frail and elderly, you know, a lot of our management is managing anxiety and obviously within it are a small number of desperately unwell children who do need to be seen quickly and they often come to our attention eventually don't they Emma in our role as paeds ID consultants? So, I think that was the original observation. And then we could look into the literature about why that sort of health seeking behaviour has occurred or is occurring, a lot of it has to do with confidence. And confidence is such a fragile thing, as we all know, as clinicians, you know, in order to be a good clinician, it's all about feeling confident, and it's exactly the same for parents. I think clearly, society has changed over the last 10/15 20/30 years. And parents are the first to admit that they just don't really know when their child's poorly, when they're unwell enough to need attention and when they're really, really poorly to need to go to hospital. And when we look at all the data that we have, you know, there are so many children being brought to ED and primary care and I think that's what we're trying to address, consistent messages.

Emma: I absolutely agree. And I had this really interesting conversation with one of our healthcare associates who worked in the community. And we were training everybody to use the Healthier Together project, and she said, I'm one of those people. I'm really anxious. I'm a serial emergency department attendant, because I sit at home, and I worry and worry. I can't trust myself and I need to go and find somebody else's opinion. He said since I've had access to this website, since I can cross check with my own worries, I've actually stopped going to them. So, for me, that's the key to this. It's that parental anxiety, it's empowering parents, and it's taking away that awful worry that you're missing the serious illness. And you and I know that actually of all the children we see the ones who are serious bacterial infections are like 1%, 1-5%. So, there's a very, very few.

Sanjay: So that's a fascinating story, isn't it Emma? About an individual whose health seeking behaviour has been so radically transformed by access to these resources. And when we've looked at this at scale, and we've looked at it across Hampshire, the Isle of Wight, we've seen similar trends for primary care presentations and for ED presentations. I think for me, one of the aspects of health seeking behaviour is the negative impact we can have as professionals, we generally think that we bring added value all of the time by how we communicate with parents. But I think when you look at how complex our urgent care system is, if parents are faced with inconsistency at the different points in that system, and if they see a GP or a practice nurse who tells them one thing, and then they go on the NHS UK website to get something else, and then they call up one more one and they're told God you need to take the child to ED, it's impossible for them to trust their instincts. And that's why the Healthier Together programme, not just a website, it's an ethos about how we take those professionals on a journey with us to ensure that we are consistent in what we communicate with parents because I think that that's going to be the game changer in terms of parental confidence.

Emma: Absolutely. I think that's so important. This idea about consistency. I see it all the time with different advice about weaning, different advice about cow's milk protein allergy. And I think when you go onto the website, there's two things, first of all you can see an area for parents, you can see an area for young people, so they don't necessarily want the same information as their parents. And you can see the professional's information and it is completely transparent. So that a parent can go look at the professional's information if they want to. And lots of parents do a lot of digging around on the Internet. And they do like to see, I often say to them if you're the sort of person who likes to read lots on the Internet, have a look at our professional site, see what they should be looking at, see why they think you should go various places because it's all transparent. And the other new addition to the Healthier Together programme is an app for your phone. And the great thing about an app is, first of all, it takes up some of the unnecessary information, so if you put in your details for how old your child is, you only look at the bit that is relevant for that child. If for example your child is, let's say coughing, you can then put in the symptoms like coughing and you will be taken to the page on coughing. It will ask you some questions and the questions will then rank your child's symptoms into the red, amber, green categories. So red is obviously bad, red is you need to go straight to the emergency department. And the amber category is for like grey zone, and that is where you might need some health information or advice from another professional. That could be from your GP, it could be from 111 and there will automatically be links to your GP and your GP could then email back some advice to you. If you don't have any red or amber flags as it were, it doesn't mean that your child is well, but it does mean that your child is safe to stay at home and there is some simple self-care advice. For example, taking paracetamol, not wasting money on cough medicine, which is one of my bugbears. So, Sanjay, tell us a bit more about how the app works.

Sanjay: Yeah, the app is the newest addition to the Healthier Together programme. So, if we think about one arm of the programme being the website, that's clearly quite static information, that's one directional in terms of we can put content on the website and people read it. We obviously base lots of our training of professionals of the content on the professional site. And so almost the key to embedding the Healthier Together programme anywhere is to ensure that all of those professionals, from our voluntary sector colleagues to our health visiting colleagues, to primary care staff, to ED doctors, etc, that we're all consistent. But then the newest bit is the app, and the app really takes into account functionality. You know, we're also used to using tech digital technology, we use it for banking, we use it for everything now that. The app is more intuitive in terms of displaying the core information the parents want and that's the red, amber, green content. But in addition, it's functional in terms of integration with primary care and NHS 111, potentially. So, in Hampshire or the Isle of White, if a child in working hours has amber features, the app will send a message via the app to the GP practice. The GP practice will review that information the same day and communicate with the parents. Out of hours it links up with NHS 111, and so you get a similar functionality.

Emma: I know also Sanjay that you have this master plan where from like sort of conception to 19, you'll be linked to Healthier Together. So down South you've actually done a lot of work embedding the maternity app into this. How does that work?

Sanjay: Well, we all know that improving pregnancy has such an impact on childhood outcomes. And we have a really captive audience with pregnant women. As anyone would know, when they're pregnant with their first child, you're desperate for information. And so, we've worked really hard with our midwifery colleagues. And this work has been recognised by the World College of Midwifery, in terms of their digital awards that they awarded the app earlier this year. And it provides very similar functionality to the paediatric app, that when a pregnant person is worried during pregnancy, they can access resources easily and they can integrate with the maternity desks that we have in Hampshire. And so, it really means you get the right information in a timely fashion. And looking at the data we have the maternity app, most of the requests and information seeking by pregnant women results in reassurance and no need to progress up to further discussions.

Emma: So, for example, you're pregnant with your first baby, you might be worried about less foetal movements you can go on to a page on the app, check out that it's okay. Get a response from a trusted professional so a midwife or your GP and then be reassured, and that would save people from actually making unnecessary visits. And you've got some evidence to show that the app has actually reduced visits or reduced attendances, is that right?

Sanjay: That's right Emma. We've got evidence to show that it's reduced visits to GP practices, and that's the data we're getting from our GP colleagues across Hampshire and the Isle of Wight. And we're just getting feedback from pregnant women that, you know, for many of the things that worried them, similarly to parents, that they find the content very reassuring and easy to access. And I think the real strength of the maternity app actually is that not only do they create a profile for themselves, but as soon as their baby's born, they create a profile for their baby and other children in the family. So, it's a very powerful way of having parents creating profiles for their children. So, I envisage in the next five years, every child in Hampshire or the Isle of White will have a profile on the app, because every pregnant woman in the past year has created a profile for herself.

Emma: There's one other thing that I really want to talk about. I think that you and I know the kind of people who look on websites and apps are often well off people, educated people, they're hunting for more information, they've got a laptop, so it's second nature for them to look up health advice and be able to judge what is good and what is not good. But how does Healthier Together help the underserved communities? How is it that to provide a leveller for health inequality?

Sanjay: I think that's the million-dollar question Emma. And I think we spent a lot of time thinking about that as part of the Healthier Together programme, not just with our sites in Hampshire and the Isle of Wight, but with many of the other 15/16 ICS that have on boarded with the programme. I think it goes back to the initial discussion we had about Healthier Together not being just a website, but being an ethos, being a way that we can integrate care. The pendulum swung so much during COVID towards digital offers, and I think we're increasingly realising that that's not the answer, you can't do everything digitally, and we can't deliver healthcare entirely digitally. We have a myriad of extraordinary people that deliver health care, from volunteers to help visitors to midwives to primary care staff. And actually, in my view, Healthier Together is just a platform to support those individuals. And so, it's not about having access to a website. It's how those individuals can be empowered to better support those families, because those are the professionals and volunteers that go out to support the most vulnerable families. And a thought I've had recently following discussions with the Department for Education with NHS England, is the siloed working that we're forced to work in, we work for the NHS, so many of our thoughts relate to NHS pressures, but when you speak to colleagues from the Department of Education, their pressures are to do with school attendance, and school preparedness. And when you actually think of the children that you've described, you know, who are these extremely vulnerable children? They're the same families, the same children. It's the same child that's not attending school, that has potentially got safeguarding issues, that is potentially presenting to primary care or ED multiple times. And so I think we need to change our approach to delivery of care away from siloed working to patient centred and family centred approaches, and I think that's where Healthier Together can really win, I think offers a platform that teachers can buy into, that social care staff including local authority staff, public health staff, health visitors, they can all buy into and healthcare professionals can buy into. And so that's where I see the vision of the Healthier Together programmes supporting the most vulnerable families and society.

Emma: Yeah, and I think that's something that we've not really talked about, that it's not just specialists like ourselves or GPs who've done so much work in building this site. But it's actually how this site is used out in the community. So, we have a Champions programme, because I think you're right, people don't want digital information all the time. They want the information from somebody they trust, and somebody you trust is usually somebody in the community, who understands what it's like to live and work in that community. So up in the Northeast, we've developed a Champions programme, where we had special training for people in the community. Some of these were non-governmental organisations, parent groups, schools, and they would all come and get a bit of information and then they would go back to the community, and they would then champion the Healthier Together projects to their community. It's very interesting you picked school attendance, we had really good feedback from one of the schools. We have a really great page which says when your child can go to school, so if you have diarrhoea, you have to stay off for 48 hours. If you have nits, it's bad, but it doesn't mean you can't go to school. And they had some children who weren't attending quite a lot with things like a little cold. And they sent them the page and they said every time they're sick, we will be looking against this page. And the parents actually really found it very reassuring and that's child's attendance improved. So that's a very real example of how information on the site ended up with better school attendance for a child.

Sanjay: I think your point is very well made, Emma. What we've realised, all of us as healthcare professionals or just as members of society that that care for children, is that schools are hugely protective. And so, although we perceive school attendance as a kind of outside of our sphere, we know that when children don't attend school, they lose their most important, protective mechanism, especially for them for their emotional well-being and mental health. And so those same children, if we don't focus on school attendants, will end up coming onto our wards with eating disorders and self-harm and altered behaviour, it's not a them problem. It's not an DFE problem. It's anyone who wishes to advocate for children and support children needs to recognise that need to work together. And so I think the model you've described of the social prescribers or health and wellbeing champions in community settings is exactly the right model to go through and it's something we're working up with The Well Centre, which is a charity in South London, that model to support young people and I think that's the model we should be advocating for across the country.

Emma: Absolutely, there are quite a few great examples. So I think in Liverpool in Ian Sinah and Alice Lee, had parents centre hubs where they use the same kind of information to teach the local community, so they've taught people in the local community about bronchiolitis and they had bronchiolitis champions and they showed that they could safely reduce emergency department attendances and increase everybody's knowledge in the community for such a simple common condition. So, I think that it's really important that, I guess that relationship where Healthier Together is actually like the glue between tertiary primary health care, communities, schools all these other things.

Sanjay: I was reflecting on the name of our programme just at the weekend you know, as I said, we develop the programme 12 years ago and the focus originally common illnesses in children, especially children aged under five because they make up a huge amount of primary care and ED activity. But increasingly, I recognise that almost the luck with which we chose the title of our programme really reflects what we're trying to achieve. It's all about Healthier Together. I think both of those terms, this isn't about illness. This is about maintaining health. This is about advocating for prevention and early interventions, and together, reflects entirely the integration and how we have to work with all of those extraordinary people that support children in our society.

Christo: I think that's really interesting, Sanjay, because taking the second part of the name of the programmes so the Together, you've talked quite a bit about information going sort of from us as healthcare professionals out into the community. Do you have any mechanisms by which you're getting feedback from parents, from schools, from other people who are involved, about what to develop? Whether any content needs changing or updating?

Sanjay: I think that's the key to the success of the programme, actually, Christo. I think that it's only if people feel that this is their initiative, do they buy into it. And so, I think we've called it a social innovation. I can't even remember the term we've used on the website, but it's very much advocating for this is us working together to support our local community. And there are two bits to that. There's that local bit, because one could always perceive Healthier Together as a big national programme, and the vision has never been to do that. You know, this has to reflect local services and it's got to listen to local young people, local pregnant women, local parents, local professionals, and that's what we strived to do throughout.

Emma: We went out to a Sunderland youth group to do a design sprint, because we have different parts of the website. So, Sanjay has talked about the maternity and the child section, and we've got a young people section. But young people never look at websites. They just don't and we're all aware of this. So, we developed this design sprint, and we went up to Sunderland, and we spent the whole day with Professor Greta Defeyter and Professor Joyce Lee, and a whole group of youngsters in Sunderland and we asked them, how would you co produce a young person's section for Healthier Together? And it was absolutely amazing. It was gobsmacking they had so many ideas. So, I'll just give you a little bit of feedback. For example, they said no, we don't look on websites. We only look on Instagram or TikTok, so you've got to get yourself a TikTok account. We actually think you should be Dr. M and that you should have like a weekly kind of like update where you just chat, they said we just want 15 seconds of a little bite and then we might go towards that. The other thing that was interesting is they absolutely believe and trust the NHS. When they were asked, they all said they would go to an NHS website, and they would look up health information there. And the NHS websites are really dry, and I think quite complex. I think ours is much better. So, there is a precedent, they will look for health information if they're signposted to it. But I'm always completely gobsmacked by the way that young people actually have an enormous amount of energy and drive, and real intelligence about how we design these things.

Sanjay: Do you know I was going to reflect on something similar but reflecting to professionals. I think if you give people the opportunity to be heard, and I think if you give people the opportunity to try things and to innovate, they don't cease to amaze me. I have trainees that write to me constantly saying, could we develop this page for the website? Could we do this project related to Healthier Together? And if you ask me, what am I most proud about Healthier Together? It wouldn't be that we've rolled out to half the country and that you know the Royal College of Paediatrics is hugely advocating for it to be rolled out to the rest of the country. What I'm most proud of is it offers people a platform to be heard and to try new things and it improves morale of staff. I think morale is single handedly the most precious commodity that we have in health and social care and from our voluntary sector colleagues, and if this programme has any impact on morale, we should be most proud of.

Emma: I think that's so true, Sanjay, I think it's morale and it's listening because there's no way one or two people can know everything. And it's the surprising, unusual things that people come up with. So, for example, we have the same experience, a trainee came up and said, I'm going to make some videos for you. I said Oh, that's great. What are they? They said, we're making videos for families of children that have tracheotomies, breathing tubes. When they fall out, how do you put them back in when they get blocked, what do you do? It's really hard to read about that. You just need a video to show you what to do. That's what all the cooking shows and everybody else does. So, they're building an entire segment on how to care for your tracheotomy tube. Specifically for parents of children on this website. So yeah, it's been open hearing what people want to do.

Sanjay: To me your description of trainees developing that content, you know, it is such an important part of the vision of the programme because so much of our work is about sharing good practice and not reinventing the wheel. And what we've achieved through having 151/6 different Healthier Together sites is that we're all able to share the best stuff. And so, I know that you and your colleagues have developed fabulous resources. You've done some of the work on testicular pain, in partnership with others. We've unashamedly then taken that and put it on our website. Our colleagues from West Yorkshire have done some extraordinary work on neurodiversity. And just last week, I added that to our website, and I think that's what's brilliant about the programme is it allows us collectively across the country to share our talents and to people and harness that energy, so that it's shared at a really wide scale.

Emma: So, I just wanted to ask Christo something, what's your favourite function on the Healthier Together website, project, platform?

Christo: I think practically the way that you can try and get the information on the pages to patients. So, I suppose I'm thinking of two scenarios. One when you're seeing a family, in say children's A&E, and you think there's some really good information and rather than having to print it or use email or something like that, there's a simple button where you can text it to a family member's phone, they get a link. It's not linked to your mobile phone or to your email address at all, so it's kind of anonymous from the point of view of the practitioner. And but I think more useful than that or even more useful than that is the kind of inbuilt translation because I think that's one of the challenges when we're seeing families in A&E. And we know that these families, the ones for who English isn't the first language, where we do them a disservice. It takes a lot more of our time, and we miss things and there is nuance that is lost. And I think if we can find a way of making that communication a bit easier, then I think everyone benefits from it.

Emma: Christo, you had two points, but they were both brilliant. So yeah, absolutely. The texting, there's a yellow button at the top it's a yellow box, you press on it, and it immediately sends a text of that page to the person in front of you. So, first of all, you know they got it. They can't lose it. It's on their phone. And remember, every time you meet people, they only remember about 30% of what you've said. And that's if you're lucky. So yeah, I use that all the time. I think that's really important. Your second point was so important. I mean one of our big drives is to be inclusive. So, we have Recite Me on the website so it will automatically translate, and it will read out the information on the page. And I think this is vital, because actually it's not that easy to read, and particularly when you're stressed. And we've also had a real drive to actually make it simpler, so we've started to include easy read pages, because actually sometimes you need something really simple, and you don't want all the detail. The national literacy level is around eight years of age, you need to think about the Sun newspaper and frankly, that's what you should be aiming at that level of information. Because when you're stressed, when you're worried, you don't need to read too much, you just need to read the important things. Sanjay, I think we're almost at the end of the things I need to talk about. So, Christo had his two favourite things, I'm going to ask you what are your three top tips for Healthier Together?

Sanjay: I think firstly, give getting it in your region. So, I think advocacy is the first thing I'd suggest for all of you and many of you listening to this podcast will have Healthier Together in your region. As I said it covers about half the country. We're trying hard nationally to find the support to roll out to every single ICS in the country. But I think there's a big difference between having the website and actually having an impact on families in your region. And that's why advocating for it, that's why using it, that's why sharing it with all of those colleagues across health and social care to support young people, and finding a way to listen to them so becomes your initiative I think is the first step. The second bit is probably something for the paediatricians listening on this webinar, in that we probably more so than ever need to advocate for families. I think that the financial crisis affecting this country has meant that more and more attention has moved towards the most costly bits of health care, which is often the frail and the elderly and has moved away from paediatrics. I find it harder now to advocate for children and young people than at any point in the last 12 years. And I do think that programmes such as Healthier Together, that are evidence based, are definitely grounded within frontline professionals that have got a huge impact, not only on health and on Urgent Care activity, but on school attendance, on safeguarding, on addressing some of the social determinants of health. We need to advocate for them. And we do that by advocating with our local commissioners, nationally with NHS England, and above that and some of the work we're doing is now advocating that governmental level in partnership with the Department for Education, Department for Health and Social Care, Institute of Health Visiting to really push the paediatric agenda and I think we've all got a responsibility to do that. And thirdly, it's probably collect data. So, in order to maintain buy in, and to continue innovating, we need data to show the impact. We're awash with data in the NHS and yet we're so data poor in terms of the time and energy and access we have to those data, but I would really, really suggest that people try and get hold of that data and look at the impact of Healthier Together and look at where your hotspots are for needing to address issues. And use your data to innovate. Use it as a way of working with your primary care colleagues, working with your voluntary sector colleagues, because actually the new models of care, which almost frontline clinicians have to drive, you know this isn't going to come from NHS England. This is going to come from us, people that desperately care about children and spend our days and lives looking after. So, use it as an opportunity to collaborate and to innovate and to bring about new models of care and new ways of work.

Emma: Amazing. I mean, obviously this is kind of like preaching to the converted, but I think Healthier Together is incredible. It's evidence based, it's easy to use, it's efficient, it's effective. And I think our message to you, to everybody is use it, share it, personalise it, collect data for us and for everybody, and innovate with us. If you're not using it, if it's not in your region, just drop us a line. We absolutely want to spread it everywhere. If you are using it, fantastic! You're already one of our champions. So, congratulations to you. And thank you very much, Sanjay. That was really lovely to see you on a Monday morning.

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This podcast is a collaboration between MediSense, medical education and the Royal College of Paediatrics and Child Health. You can find more creative learning resources on www.medisense.org.uk and of course a wealth of information on the important work of RCPCH on www.rcpch.ac.uk or #ChoosePaediatrics.

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Emma: The views, thoughts and opinions expressed in this podcast relates only to the speaker and not necessarily to their employer, organisation, the Royal College of Paediatrics and Child Health, or any other group or individual.