Dr Tamsin Newlove-Delgado (Senior Clinical Lecturer and Hon Consultant in Public Health) & Dr Oana Mitrofan (Consultant Child and Adolescent Psychiatrist), both of Exeter, UK, present their surveillance study of new Sydenham’s chorea cases presenting in the UK and Republic of Ireland.

Transcript

[Tamsin]
So yes, it’s a hard act to follow on from Callum and Andrew – I was just thinking and also reflecting on how great it was that we heard from you first because in a way the presentation that we’re giving might feel a little bit dry, because we’re talking about numbers and cases, and I just think it’s really important that we’ve heard your stories and that we, which we always tried to do when we research, remember that they are real. Every single case that we’ve had reported to us and our surveillance study is a child or a young person and a family, and they have a story like that. So I hope this doesn’t sound too horribly dry after hearing about your personal experiences.

But I guess what we’re trying to do is step back a bit and talk about what we’ve learned at a population level – but yeah, fantastic to hear from you guys. And I think I climbed one, Monroe once and that was extremely difficult.

And yes, I’ve not had Sydenham’s chorea or anything. So I’m also very confident you can climb Everest!

But I’ll move on and get on to what we’re going to talk about. So Oana and I are going to talk about our UK experience of researching Sydenham’s chorea and the cluster of Sydenham’s cases, and again I don’t like to say “cases” because it’s children and families, isn’t it? But it’s often the term that we use in research and epidemiology, so I hope you’ll excuse me using that.

And some of the only other research that had been done in terms of looking at how common or rare Sydenham’s might be was by Professor Mary King’s team in the Republic of Ireland, which was 2004 to 2014, and they did a retrospective study and the title of their study was “Sydenham’s Chorea –  not gone, but perhaps forgotten?”, finding quite low levels of awareness and uncertainty about the best kind of treatment.

So together we  developed a partnership with researchers and with the Sydenham’s Chorea Association to try and address some of these questions about what’s currently going on in the UK and Republic of Ireland in terms of Sydenham’s. And we’ve had a lot of support and funding, both from the Symptoms Chorea Association here today, but also from the British Association for Childhood Disability and the British Medical Association, all of whom have given us funds to carry out our surveillance research.

So what we all worked together to do was to develop a surveillance study.  And I suppose you might say there are a lot of questions that you could ask about Sydenham’s and a lot of research to be done. So why in this case a surveillance study? And I think the value of that is that you can establish the pattern and presentation of a rare condition, which is really important. You can describe what’s currently going on in terms of clinical practice. And then follow up. Hopefully you can investigate outcomes and what happens to the children and young people, which can then be really valuable information for families.

And the other thing about surveillance studies is that they often have a kind of a secondary effect of raising awareness amongst clinicians because they’re being asked to fill in cards every month or getting information. And it just might help them become more aware of the condition through the process of participating in surveillance, as well as when we talk about our own results.

I’ve just touched on it here – a few other ways in which we use surveillance studies is they can help us establish population estimates of exactly how rare or common something is. There was the idea that at one stage Sydenham’s was a thing of the past, but we know that it certainly isn’t, as I said, this kind of surveillance can help to provide better information for families about what to expect and the experiences of other children and young people who have had the condition.

And importantly, clinicians need to know in modern times, how does Sydenham’s Chorea present? What are the most common features and what information they can give to families?

And when we think about services like paediatric neurology, or cardiology, or child & adolescent psychiatry, we need information on the needs of children with Sydenham’s so that we can plan and design services in terms of describing variations in practice and management – and that can help us identify whether we need to develop more guidance or consensus, and also identify further unanswered questions and uncertainties for further research.

And there’s a lot of those.

[Oana]

Just to say, that’s what the BPSU and CAPSS studies were designed for in the first place. I think, in a way, the title of the paper “not gone, but perhaps forgotten” is a better way to think about what they call “rare conditions”.

And also now reflecting back on our experience, in clinical practice, that we are all trained in things that perhaps we have not seen.

When I first heard about the Sydenham’s Chorea project, I had to go back and look it up. Because I have not seen a child or young person with this condition, which is perhaps telling, and reflects the what we’ll be talking about later on in terms of the CAPSS study, that I’m not the only one, you know, I’m not the only child psychiatrist, chances are, that has not seen it during training or practice as a consultant later on.

So I think it’s one of the great things about the surveillance and bring that forward. And it’s one thing that I remember from my medical training, you can’t recognize something unless you’ve seen it before, unless you know about it. So if you don’t think about it, you’re not going to recognize it.

So I think that’s the fantastic opportunity to run surveillance studies is that you bring that into people’s minds, that’s the hope I think we have with the studies.

[Tamsin]
Exactly. Thank you, Oana. And yes, I remember, I think I had to go and look, I found some videos, to see how it presents, so I could understand more about it. I had only done a bit of training in child and adolescent psychiatry, but also never seen it. And so I think that’s why the videos that Adrian and others are making also are so valuable. And Oana mentioned BPSU and CAPSS, which are the surveillance systems which some of you might be very familiar with. But we’ll say a little bit more about those in a moment.

So this was the aim of our study and I think this again sounds slightly dry, doesn’t it, the aim was to conduct the first prospective surveillance study of Sydenham’s in the UK and Republic of Ireland, and we wanted to describe the current paediatric and child psychiatric service related incidents, presentation and management in children and young people aged 0 to 16. So again that does sound very dry – basically it’s about understanding more about the incidence, new cases, and the pattern of them presenting and how they present in terms of modern day Sydenham’s, and understand more about practice and what happens to those cases. Those children, sorry.

And these were our research questions – so we wanted to look at the service related incidence of first presentations to paediatrics, so by this we just simply mean the number of new cases that are being seen by paediatricians in ages 0 to 16 in the UK and Republic of Ireland, and then the psychiatric service related incidence, which would be children and young people presenting to child and adolescent psychiatrists or CAMHS services in the UK as well.

CAPSS is also Ireland, isn’t it? Yes, CAPSS is UK and ROI. And the thing to say about that is that it was slightly different, in that we were interested in any children and young people coming in contact with CAMHS , whereas for paediatricians it was new cases. But Oana will say a little bit more about that in a moment.

And again, we were interested in finding out how are these children and young people presenting, what are the symptoms they have when they come into contact with services, and what’s the current clinical practice in terms of investigations, management and referral. So we already touched on some of the things around immunotherapy, antibiotics and what children and young people being prescribed, how long are they taking it.

So I’ll move on – Oana is going to talk a bit about the method.

[Oana]

So we used the BPSU and the CAPSS, that are already running studies with similar methodology in terms of conditions that we don’t see often in clinical practice.

So you know why that as I said that that’s what they were designed for.

 And it was a fantastic opportunity to have both on board so we can run a parallel surveillance. So the BPSU is the paediatric and BPSU is psychiatry, I like to think of them as like the sisters.

Two sisters working together. The timing wasn’t quite the same, related to practicalities as well as planning ahead in terms of the follow-ups, because some of them were thinking of children and young people presenting to a paediatrician for the first time. But the CAMHS which is kind of the mental health presentation, psychiatric presentation would often come later on. So they don’t exactly match in terms of the timing, but we wanted to cover as much as they can cover so BPSU ran from November 2018 to November 2020, and CAPSS was May 2019 to December 2020.

I won’t go into that much detail, I’m happy to answer questions, but basically they do a very similar thing. Both BPSU and CAPSS send reporting cards to registered paediatricians and child psychiatrists, nationwide, basically just to ask whether you have, as a clinician, seen a child or a young person presenting with the suspected or confirmed condition, Sydenham’s Chorea in this case, and then the cards get returned (these days electronic forms are used, they used to be in paper format), to notify if you have or have not seen a case.  You want them to say Yes, I have, or no, I haven’t, and that’s to check whether actually people receive the cards. That response is really, really important, that’s how we check.

And I’ll explain because with CAPSS, there was a time when the response wasn’t great.

Once somebody says yes, I have seen a case, then we ask them for more information for the questionnaires.  So the National Health Service partner site receives the notifications and then when the questionnaires get returned there is obviously a bit of a process around anonymizing the data so that the research team receives only the data they need to see and then obviously then securely stored. So that’s the research data coming to the university, without the data we don’t have to know.

The case definitions are slightly different as has already been touched on, so obviously with the paediatricians, this was the first time they have seen a child or young person with possible Sydenham’s Chorea. It’s frequently a clinical diagnosis. So although we ask about lab testing, strep infection does not have to be confirmed, so we don’t miss out.

And CAPSS – we had, I remember, a long conversation, lots of debates about how we can make it clear for clinicians. But we don’t want to miss out on cases being reported and we know services work differently – paediatrics compared with psychiatry/mental health service.

So we asked psychiatrists to report whether they have or have not seen a young person/child with suspected or confirmed diagnosis of Sydenham’s presenting to them, to their service, for the first time within that current episode of care. This is very much service related, but we had to phrase it in a way that it’s clear for clinicians what we want them to report, and we don’t miss out any child or young person that at some point has been referred to a psychiatrist or CAMHS.

 I stress that because you’ll see later on, it’s been, for us as researchers, a little bit disappointing in terms of CAPSS, but it might be that there is a lesson to be learned from that. So I remember Tamsin Ford saying “you know, negative findings are still findings”.

The questionnaire content had a lot of details in it, and of course for BPSU, there’s much in terms of the paediatric aspect –  symptoms, history and antecedents, the investigations, management and referrals, impact on functioning, lots of details and hopefully everything, trying to cover lots of material and also being aware of clinicians’ time. But it was very important for us because I think that’s what families with children and young people and what other clinicians want to know, not just numbers.

[Tamsin]

So just moving on to some of our findings. These are currently submitted for review, hopefully we’ll be published, but at the moment they are unpublished. So I’ve just put on the slide the title of the paper that we hope to publish – these findings won’t change, but the way they’re framed might do slightly.

So these are our findings from our surveillance with the British Paediatric surveillance unit over two years of surveillance and basically what we see here is that we had 72 reports from paediatricians, some of which turned out to not be eligible – when we got the questionnaires back, it either wasn’t the first episode of Sydenham’s, or actually when it came through, it wasn’t Sydenham’s.

Some clinicians reported duplicate cases to us, maybe two different paediatricians, one who might have seen the child first, and then another who saw them subsequently, so we excluded those and we did have 15 that we weren’t able to follow up and get questionnaires back from. That’s not at all uncommon with research, it’s actually quite a decent response rate. But obviously it would be nice to have got all questionnaires back from everybody. But sometimes this just happens, clinicians move on or are very busy or can’t find the records of that child.

 So what we’ve ended up with is having in total 43 children or young people 0 to 16 with either suspected or confirmed Sydenham’s Chorea that were reported to us. And on this next slide we have  done a bit of work turning these into estimates of incidence in a population because that’s normally how we would present things in epidemiology. But these of course do look like very small and perhaps not particularly meaningful numbers to people when we talk about 0.16 per 100,000 children aged 0 to 16 per year.

We can move on to think about what that actually means, but also to add (and this is all in the paper) that we can also assume that a certain number or a certain proportion of those that we couldn’t follow up may also have had Sydenham’s Chorea actually, and that does slightly increase our incidence estimate. But I suppose if you think about this in a population (and again it goes back to the number that we had), is that we do think based on the numbers we had reported, if that were to happen every year, we would see 20 to 30 children roughly aged 0-16 in the UK developing Sydenham’s chorea presenting to paediatricians.

But there are lots of reasons why this isn’t an estimate of all cases. Some might not be seen by a paediatrician, some might not recognize symptoms. Some paediatricians, for example, you might be seen by a doctor who’s not a consultant or not currently reporting to the BPSU, and the consultant that does isn’t aware and so it won’t be picked up.

 [Tamsin]
And I think the other important thing to say is that this is new or incident cases, so we’re not including children and young people who might be presenting to a paediatrician with, you know, a recurrence, as in Callum’s story.  I think the other thing to say is that these  estimates of incidence seem to us to be  roughly in line with Professor Mary King’s, from the study that she did from case notes in in Ireland some years ago so we’re coming up with fairly consistent estimates of the incidence of paediatric presentations.

So in terms of the characteristics of the children that were presenting to paediatrics, there was a mean age of of 9.4, a range of four to 16 (our limit was 16). So that obviously makes sense. The majority were girls and the majority were from a white ethnic background. The majority of cases that we have reported or children reported were from England with fewer from Wales, Scotland or Northern Ireland. But that’s probably roughly proportional actually, when you think about population sizes. Most of the children were reported by consultant general paediatricians, but a third were reported to us by consultant paediatric neurologists. But of course they may have been seen by multiple different types of paediatric consultants over their journey. But these are the ones that actually report it to us.

This is a little bit of a busy slide and again it there’s more details in our paper, but this shows the most common features that children were presenting to the paediatrician with. Obviously all of the children had chorea, because that was the key feature of Sydenham’s chorea, and the majority were presenting with what the paediatrician characterized as “moderate” chorea, with a few with very severe chorea, and some with milder chorea.

So the most common features overall were, as you might expect, neurological features. The vast majority had a loss of fine motor skills, or disturbance in their gait (their walking) or slurred speech (dysarthria). So those the most three most common features overall, but a majority also experienced some kind of problem with muscles, in terms of weakness, loss of muscle tone, or “motor impersistence”, another common presenting feature.

We were, of course, very interested in the kind of emotional and behavioural neuropsychiatric symptoms that children might present with, “emotional lability”, so those rapid kind of changes of mood, and again they were very common: more than 3/4 of children presenting with that, and over half presenting with some kind of anxiety.

Inattention or deficits in attention were also common, as were tics too.

Less common things at presentation were obsessive compulsive symptoms, depressive symptoms, hyperactivity. But again, these were at the time that they were presenting to the paediatrician. So later on, that might have changed.

And interestingly other features of rheumatic fever, other than chorea, were very rare in this particular sample, although some children did have carditis [heart inflammation] at the time of presenting, but that’s probably something more for paediatric cardiologists or others to comment on, it feels slightly outside my field.

 [Oana]
One thing to add, just reflecting, when I was looking at the results – sometimes that’s the beauty of research, flagging up some aspects of a condition that weren’t necessarily included in the diagnostic criteria – one comparison in my mind is when we used to think of autistic spectrum conditions, and sensory processing difficulties weren’t part of it, but now it is. So that’s what I’ve looked at, yes, loss of fine motor skills I expected, difficulties with walking and joint problems, everything I expected. But actually the emotional lability is very high. It’s almost as high as the motor difficulties and I was thinking, I wanted to go back and look at the diagnostic criteria, because maybe that should be in there if it’s that common. Maybe that’s something to look into, ‘cause I don’t know at this point, maybe the first thing to mention, emotional behaviour, because I expected hyperactivity or tics, I was more familiar with those but problems/symptoms like rapid changes in mood, becoming easily tearful, I tend to see that in my practice quite a lot, but not necessarily for young people with neurological or neuropsychiatric conditions, and so that is the first thought I had, it’s similar to others and something that should be included in the diagnostic criteria.

[Tamsin]

Yeah, I think that’s really interesting, have you pointed out that it was one of the most common things that the children presented with.

[Oana]
I didn’t expect it.

[Tamsin]

Yeah, after those neurological symptoms. I suppose one caveat is, how comfortable the paediatricians felt identifying and putting a tick in the box against some of the others, like hyperactivity or obsessive compulsive symptoms, or inattention. But I think it’s really interesting and something to think about when we think about how we characterize, how does Sydenham’s present, what are we likely to see?

 [Oana]
I mean, it does stress the importance of joint working and having clinics where you have a paediatrician and a psychiatrist working together, “liaison psychiatry”. I can’t stress it enough. And I work in a service where we are fortunate to have one but it doesn’t happen everywhere.

 [Tamsin]
Again, this sounds very dry, impact and activity of daily living and it makes me think back to what Callum was talking about, his experience and we included something called the UFMG, it’s from a Brazilian university but I’m not going to embarrass myself by attempting to pronounce it, it’s what we used, a rating scale, to ask paediatricians to rate impact on functioning in a number of domains: hygiene, handwriting, dressing, speech, walking, using a knife and fork. And half of children had what was rated as “severe” impairment due to their chorea on at least one of those domains. So I think that just shows us (probably not as well as Callum’s story), but does show us the impact that it can have.

This is probably the final slide on the findings and I haven’t given a lot of detail here. There is some more detail in the paper, but it’s quite a small sample really to describe in a lot of detail. But what we can say is the vast majority, almost all, were prescribed antibiotics, which is obviously positive. But there were certainly different antibiotic regimes and use being reported by paediatricians. 

Other treatments used included the symptomatic treatment of chorea say with anticonvulsants such as Epilim, or neuroleptics.

Over 1/4 had some kind of immunomodulatory treatment, 16% prescribed Prednisolone or another steroid, and 12% having intravenous immunoglobulin.

And in terms of the other agencies or professionals that might be involved, around half of children (and again, more referrals might be made later, because this was at the point of presentation) were referred to occupational therapy or physiotherapy, and 14% to clinical psychology or neuropsychology. I don’t think we had very many where they reported involvement of educational psychology at that stage. But again it’s early stages and very few, I don’t like to give exact numbers here because we have a small sample and we’re just being a bit careful, fewer than five had a referral to CAMHS. Oana will talk about the CAMHS.

[Oana]

It is interesting because on the BPSU side of the study, when some children, as Tamsin was saying, were referred to child and adolescent mental health services, when we run the CAPSS study again, as I said earlier, very similar methodology with that difference between the case definition and the questionnaires, because we wanted to know about the children presenting to a child psychiatrist for the first time.  We can hypothesize, there is no clear or straightforward explanation, why we haven’t had any reports over the 18 month reporting period and despite all the efforts in terms of tracing, making sure that we haven’t missed anyone out – we haven’t had any reports from CAPSS.

So again, as I was saying, Tamsin Ford is always highlighting that you shouldn’t despair, that you take this as a positive and think of what are the implications of the negative findings, they are still findings. Next its implications, what recommendations we could make for research as well as clinical. It’s very easy many times to say, well, I know the research study, but it’s how doable that is.

In terms of our thoughts, making sense of the negative findings, we talked about the emotional and behavioural difficulties, that emotional lability being quite high and and quite common, the way to think about the methodology issues, there was a low response rate from CAMHS, it was time limited.

Could it be that children, people that had emotional and behaviour difficulties, were seen by other clinicians, I’m thinking of the service I work in, paediatric psychology?

Or maybe being referred to CAMHS, they weren’t seen by child psychiatrists. Unfortunately, CAPSS only covers doctors. The consultant psychiatrists are registered with CAPSS but it doesn’t cover every single other CAMHS clinicians. And it could be that there were many teams within CAMHS or clinicians not registered for CAPSS. And of course we won’t hear about them.

Some CAPSS services tend to be quite small and so if there is a case discussion you hear about it, even if you haven’t seen the child directly, you’d hear about the young person being talked about in a multidisciplinary team meeting.

So there is that possibility that the cases were seen within CAMHS, but the psychiatrist was not aware.

And we are left with the question if children were not referred to CAMHS, were not seen by a psychiatrist, was this appropriate or not? And how we can ensure, how can we make efforts, that children have the support they need, not necessarily from a psychiatrist but within a mental health service, so that could be in psychology, could that be within the wider CAMHS service?

So we are left with questions at the end of the study, which is not very comfortable for researchers, who like to have answers to questions, not to end up with more questions that you started with.

But we’d like to hear people’s thoughts, and to help with this event, and the paper, this is a starting point. And you know, it might be a good thing to have this question, to raise awareness and colleagues reading the paper, thinking “have I missed something in my own practice?”

We tried to put together a few thoughts and have put more detail in the paper about “not gone, but perhaps forgotten”, and we’re trying to get rid of the “perhaps forgotten” bit!  So that we can raise awareness.

It would be fantastic to reach that consensus in terms of the clinical management and the support for children and for the families.

We mentioned that kind of confusion between PANS [paediatric autoimmune neuropsychiatric syndrome] and PANDAS [Paediatric autoimmune neuropsychiatric syndrome associated with streptococcus], which many of us feel or will be thinking “what exactly is the difference between these?” That distinction is important clinically because of the treatment and the trajectory in recovery afterwards. But there is good work done in in both areas, it’s important to bear in mind the difference, but yes it is a work in progress, with many of us in clinic thinking, “have I got that right?”

[Tamsin]

And I think we did wonder whether any of that might have been influenced reporting as well.

In terms of what’s next, we’ve got the publication of the study findings more formally, and we also have, we didn’t particularly talk about this because we haven’t collated the findings yet, but we did also do 12 months and 24 month follow-ups going back to the paediatricians to ask how the children were doing, and I think that’s actually one of the most interesting things really, answering that question about one year and two year outcomes and I think you can say that we haven’t had obviously such a good response to that, because you’re trying to track people down later on. In general, a lot of the children seem to have had quite a good resolution to what’s been happening with them in terms of their difficulties, but we need to look at that in a lot more detail. So I don’t want to say too much about it, but we are currently, we’ve just got a student who’s going to come and work with us to analyze that and I think Mike Eyre and others are going to talk about the Delphi project later on, actually, but one of the things coming from this is an international collaboration, thinking about consensus and development. And yeah, also interested Oana has talked about some other things around how we support children better, but obviously keen to hear other ideas or feedback about what’s next. So thank you everybody.

[Oana]

Reflecting on Callum’s story. It would be fantastic, but we are limited with methodology, to have a longer follow up. Because that, the optimism and the hope, that positive approach, it’s so important for someone’s recovery.

So knowing this kind of story, is obviously with the charity, that’s a fantastic piece of work, so people know, yes, the recovery is happening, that I can look forward to the rest of my life. But it would be great as a researcher to be able to have that data like 5 years later, or 10 years later on, that would be great.

[Tamsin]

It’s true. It did make me think, listening to Callum, our two year follow-up, it’s very short, but it’s just one of the difficulties of following people up effectively, and it also made me think that it should be interesting to know what Callum identifies as the most important research priorities. I know that’s discussions that the SCA do have, but anyway, thank you. We’ll stop, happy to take any questions.

[Nadine]
Thank you both. That was wonderful, any questions?

[Michael]
I thought I’d kick off, because I read in the Guardian three days ago, a paper I don’t always read, that rheumatic fever, which of course is very much part of the story of Sydenham’s chorea, that they are highly connected. According to the Guardian, rheumatic fever is “a disease of severe social deprivation found mainly in the Third World.” Would you be able to explain whether your findings tell us anything about that?

[Tamsin]
Sadly not, other than that’s clearly not the case, no, but it’s only in the third World – it is interesting in terms of the distribution of cases that we’ve seen, but we didn’t collect  information about where people were living or their social circumstances, unfortunately.

I just wonder what you would reflect on that, Michael, what your reaction was to that article?

[Michael]
My reaction was I wanted to write a letter to the Guardian, but I didn’t think they’d publish it. But the medical editor could certainly do with a bit of information. I suspect just introducing them to Andrew and Callum would be a start. I mean what we found in Glasgow was that it made no difference really what people’s background was and I think it’s unfortunate, still, that you know people see rheumatic fever and Sydenham’s chorea is something that doesn’t happen here and hopefully your paper, when it comes out, and the Italian work that’s come out, will help people see that differently.

[Nadine]
Thank you, Michael. Any other questions, Adrian?

[Adrian]
Of course, the Glasgow story was of a cluster and I thought it was interesting that in the duration of your surveillance study, it didn’t really look like there were any clusters. And of course the reason it’s better known as a disease in areas of social deprivation is because of the fact that it’s an infection that’s spread by close contact and poor hygiene. So it’s just a different kind of situation, isn’t it? And and I know Doctor Garone is going to speak more about the data in Italy. So look forward to hearing more.

[Nadine]
And I think, Adrian, you did that helpful map, didn’t you?, Glasgow is such a large city and actually there wasn’t, was there? There wasn’t really any correlation between where the case is from?

[Adrian]
No, that’s right. And even just looking at the people who’ve joined our Facebook group, from all around the world, again, it is just scattered around. It doesn’t look like there’s clear outbreaks. But of course, you’ve just told us there’s a case in the UK, probably every two to three weeks, and we’re not hearing it as a charity. We’re not hearing about most of the cases still, which is a shame because I don’t believe it’s for lack of the need for support and information.

And going forward I think there will be clusters in the future and it would be nice to know more about them.

 [Tamsin]
Yeah, I think we were surprised because, well, certainly I had expected to see clusters, but over that two years, no evidence of them. Obviously it’s sometimes that time frame, it perhaps was just by chance that that didn’t happen, but they were very distributed. And the other thing was the reporting was fairly even, we would occasionally get a few come in at once, but generally the reporting over the course of the year was fairly even, which also surprised me.

Actually during COVID as well, because one interesting thing was that the last six months or so of our surveillance was during COVID and we’d expected maybe not to see, I don’t know, I suppose we might not see any or very few during that time. If being isolated might have made that kind of difference. But again, it was quite, quite steady. But I think it’s difficult to extrapolate on a quite a small sample. So we may well see clusters in the future, as Adrian says,

[Oana]

In relation to COVID, it might have been too early. And it’s not just within CAMHS. We see a bit of a comeback in some conditions or a sharp rise in presentations including tics for instance, and in terms of the come back of some conditions that have been rare for some time. So I don’t know if we could run the study again it would be really interesting to see if there has been any increase or any clusters now.

More questions than answers…

[Nadine]
I know it’s always the case, isn’t it?

But I think it was lovely that you put the positive spin on it because the questions and then more questions, it’s all positive. I think it’s really interesting. The response from CAMHS I really do and I think that is a much bigger question for what is happening with just physical illness in general within CAMHS and what’s happening to the nature of CAMHS. So I think it’s very exciting for us who work in CAMHS to be thinking actually some of this work is going to penetrate and hopefully change the structure of CAMHS, because at the minute CAMHS just seems to be firefighting, with waiting lists and urgent need and so hopefully I’m hoping and very passionate that some positive will come from this work for that relationship to, I suppose, re-engage because it’s been there in the past, but between paediatrics, and psychiatry, and from primary care to. CAMHS.

[Tamsin]
Yeah, in a way this is almost an exemplar, isn’t it? Because there are other conditions that this applies to, many of them, but it’s an example.

[Nadine]
Yeah, and a really good one. That’s lovely. Well, thank you both so very much.