Thread by @SammyInquest

Back in court

Coroner asks name for recording: Dr Jo Baker

Coroner: You're a consultant paediatrician is that right?

JB: yes

Coroner: do you remember Sammy in addition to any notes you wrote at time?

JB: Do you mean do I remember him? Yes I definitely remember him

C: will take you through your involvement with him, welcome refer to statement, then will ask you questions

JB: I think I met him for first time on 7 June 2018 and I had been, one of other paediatricians in Margate informed me Samuel had moved to the area but I think we had...

JB: Was aware he'd been involved with Dr Ryalls when he was living in Surrey so I, in June did general appointment with him, went over past history, he was on growth hormone at that time. Did letter to GP outlining general history

C: That was June 2018?

JB: yes, plan was basic drug tests, many patients see Prof Dattani as well, he comes down from GOSH and we share patients. Anyone on growth hormone sees Prof Dattani and I arrived for Sammy to see him in his outreach clinic

C: is that a joint clinic?

JB: Yes he comes for whole day, sometimes we see patients together, sometimes individually

C: In terms of endocrine problems with Sammy was that something you were looking at separate to his Prader Willi Syndrome or part of?

JB: No he was on growth hormone because of PWS... yes it was endocrine really

C; would you have in your role have any involvement or planning for any problems he may have more generally, or only specifically about endocrine problems

JB: It was really the endocrine that I was seeing

C: in relation to PWS and autism who would you expect to take the lead with regard to any problems occurring?

JB: with regards to the autism you mean?

C: well the combination of the two

JB: CAMHS

C: not the Children with Disabilities Team, but CAMHS?

JB: in my experience they work together but he was already on [medication] at that stage, prescribed by psychiatrist

C: so any management of that were being dealt wth by those who prescribed drugs, so CAMGS team essentually

JB: yes

C: We've heard about Children in Need meetings, did you attend?

JB: I wasn't able but I did do a letter

C: so they have an understanding of your role in Sammy's care?

JB: yes

C asks if Patricia AS brought letters to show Dr Baker and discussed his episodes with her

JB: I don't think I'd understood the problems in 2018. Yes he had outburst, but it obviously got more severe, sorry cant remember question now

C: did she bring problems she was having in regards to his behaviour to your attention?

JB: yes

C: were you able to give any specific advice?

JB: I do remember clinic with Prof Dattani and he suggested a referral to Prof Santosh, but that hadn't been mentioned before, he'd been seen a year before that but we realised things had escalated

C asks about interplay between endocrine and PWS

JB: Sammy was quite tall, his parents are quite tall, but he was started on growth hormone to help with muscle tone. Boys with PWS sometimes need help going through puberty, he had investigation I think in March...

JB: sometimes boys do need testosterone replacement, that was anticipated in future really, we were aware that testosterone would perhaps make his emotions even more difficult

C: so his testosterone was in a normal level, when was that taken?

JB: March 2020 he came to ward and had these investigations, 9 March

JB mentions Prof Dattani considered delaying testosterone, Coroner asks why

JB: because its puberty so his emotions would be more difficult to manage

C: you say testosterone was normal in March 2020, was he pre-pubescent or at what stage?

JB: test was to see whether he was able to produce testosterone, he did manage a response and was able to produce it. I think from memory when Prof Dattani examined in Jan XX he hadnt started puberty

C: So behaviour wasn't related to hormone?

JB: Correct, yes, he was pre-pubescent

C: presumably you monitor and any further advice you give, how frequently, six monthly?

JB: six monthly

C: his mother in her evidence explained at time of covid she tried to contact you for advice regarding the risks to him; what would you have said his clinical risk was at that stage, whether needed to shield or otherwise?

JB: its difficult, at that time we'd have said we had to do what government was recommending, because it was unknown and they were saying children with special needs needed to shield

C: that was global advice rather than specific to individuals?

JB: it did change after that

C: we were fairly early on in the pandemic, when you saw him last was March 2020 what would advice to be, just generally to shield if you have any disability, or just physical disability

JB: I think it was people with genetic conditions and disabilities generally

C: would there be different advice today in regard to what Sammy presented with at that stage; would he be advised to shield now?

JB: I don't think he would, looking at immune response he didn't have immune deficiency

C: but early stages was shield in case

JB: GPs had been instructed to send letters out, I think, they'd been instructed to do that JBL its difficult, at that time we'd have said we had to do what government was recommending, because it was unknown and they were saying children with special needs needed to shield

C: that was global advice rather than specific to individuals?

JB: it did change after that

C: we were fairly early on in the pandemic, when you saw him last was March 2020 what would advice to be, just generally to shield if you have any disability or just physical disability

JB: I think it was people with genetic conditions and disabilities generally

C: would there be different advice today in regard to what Sammy presented with at that stage; would he be advised to shield now?

JB: I dont think he would, looking at immune response he didnt have immune deficiency

C: but early stages was shield in case

JB: GPs had been instructed to send letters out, I think, they'd been instructed to do that

C: If there were concerns at Children in Need meeting how would that get back to you?

JB: I would probably be copied into letters although I dont remember there being any

JL: struggling to hear I'm afraid

C: you are quite softly spoken, could you raise voice please, probably from dealing with children you lower your voice

JB: Probably in a letter

C: Do you recollect any response directing you to take any action?

JB: No

AP: Profound general disorder, multiple impact and rare condition [I think]

JB: yes

AP: you were seeing him as an endocrinologist, that was reason he was seen by you?

JB: yes

AP: physical aspects of his care and hormonal aspects of how PWS was affecting him as child?

JB: yes

AP: to be clear during that time his height and weight was being managed well weren't they?

JB: yes

AP: for PWS patients he was physically well?

JB: yes, his weight had gone up a little bit but it was amazing

AP: he wasn't morbidly obese or anything, his weight was managed, for a PWS patient it was acceptable if not impressive?

JB: it was impressive

AP: behavioural episodes are feature of PWS arent they?

JB: I've not seen many patients with PWS, Prof Dattani will have seen more

AP: we'll ask him, there was no question that his behavioural aspects was part of his condition as a PWS child?

JB: no question, yes, was part of his condition

AP: it was open to you or Prof Dattani at any time to make referrals onto specialist teams to look at behavioural aspects of Sammy's condition?

JB: I guess so, yes. Are you referring to Prof Santosh?

AP: or any other professionals

JB: I was aware he'd been seen by psychiatrist and having dealings with CAMHS

AP: it was clear main concerns during period you were seeing Sammy were about his behavioural aspects, is that right?

JB: I think first meeting was schooling, he was out of school, second meeting I think he still didn't have a school place, so that was concerning as he was out of school

AP: there were number of Children in Need meetings in 2018 and 2019, you never did attend any meetings did you?

JB: no

AP: did you attend any meetings?

JB: there was just one meeting I couldnt attend and did letter for

AP: did anyone raise you weren't attending Children in Need meetings at that time

JB: no

AP takes to letter 29 October: there's summary of his presentation, weight, BMI, marker there <cant hear> still being prescribed XXX

AP: if we scroll to bottom of first page there's mention there was seen in outreach clinic in Jan 2019 and had been due to see him in clinic but postponed appointment and you spoke to Mrs AS on telephone in June 2019. Can you see that?

JB: yes

AP: she said she was having a very difficult time with Sammy... at times such state tried jump out of window... now classified as Child in Need, mum aware requires 3 members of staff at school to restrain him

{reads from letter}

AP: Go on to plan, you'll do some bloods today, we heard earlier Sammy founds that difficult, then he'll see Prof Dattani in Jan 2020 at outreach clinic. After talking mum decided hold of growth hormone for now and discuss growth hormone and testosterone in Jan 2020

AP: So conversation in June 2020 and she's raised concern is very significant isnt it

JB: yes

AP: she's told you the police are being called because he's become so violent?

JB: yes

AP: you know social work team involved as well as CAMHS, did you reach out to them after this conversation to see if anything being done to address this issue?

JB: I didn't speak to them after this no

AP: was any conversation between you and Prof Dattani after June 2019 about how best the behvaiural aspects might be supported?

JB: I think he was aware he was off growth hormones

AP: was limit of conversation about growth hormone aspect of his care, which as you say he was <can't hear> muscle tone staying same, no conversation you recall about behavioural aspects?

JB: I must have explained he was off growth hormones because of behaviour

AP: any discussion between you at that stage that another specialist input might be required, in June?

JB: no, no

AP: its agreed to hold off growth hormone isnt it?

JB: yes

AP: referral made to Prof Santosh because it was someone Prof Dattani knew. Prof Dattani hadnt mentioned a referral to the Maudsley before then is that correct?

JB: yes

No further questions from family

JL for Kent CC

JL: Only have a few, I'll be asking, I wonder if you could look at the bundle

C: I'll get my usher to open, which bundle Mr Landau?

JL: Bundle 3 ma'am

C: Mr Landau represents Kent County Council

JL: TYVM ma'am. My name is Jonathan Landau, I'm asking questions on behalf of Kent County Council. I'd like to ask about Children in Need meetings, you said you were invited to one meeting, weren't able to attend and wrote a report

JB: yes

JL: can I ask you to look at p401 please

JB: i'm not sure where the pages are in this

JL: if you use page number of pdf itself, at top, electronic should be 962, if you type in 401 next to that it should bring up that page

JL: they're social services progress notes of various engagements in relation to Sammy, bottom of page, X Jan 2020, scroll down

I'll read it to you to put the point, if you need to see it let us know

JL: Letters sent to professionals inviting to next CHIN, which is children in need meeting, says letter to be sent to Dr Baker.... we have actual text of the letter below that informing of CHIN meeting to take place on 17 January at the school.

JL: Do you recall getting that letter now I've refreshed your memory about it

JB: I've a letter I did in Nov 2018 for a CHIN meeting in December

JL: I want to suggest there was another invitation sent on 3 January inviting you to meeting on 17 January and for whatever reason you didnt respond to that, you cant help us with that?

JB: no, I wasn't aware of it and probably wouldn't have been able to attend

JL takes to another record; email sent to various including Dr Baker, this time it was an invitation sent by email

JL: again I suggest to you there was an invitation but that for whatever reason you weren't able to attend that meeting either, would that be right, it might have got lost?

JB: I don't recall it

JL: In relation to PWS you said you're not terribly familiar with it because its very rare but we've heard about some of the behavioural aspects of that

JL: is that why Sammy would have been referred to CAMHS because its not just a physical disability but also has some impact on mental health so needs input from psychiatric services?

JB: yes

JL: thank you ma'am those are my questions

C: I'll now ask the represerntative from the psychiatric services if she has any questions, Ms Tew

AT: I think you said you expected CAMHS to manage the behavioural aspects of Sammy's presentation, did you know Sammy was on medication?

JB: yes

AT: is that what you'd expect CAMHS to provide?

JB: Well I'd expect follow up and monitoring

AT: thank you, I have no further questions

C: in which case, thank you very much for coming to give evidence today.