July 8, 2021 • 43 mins
In this episode we have the fortune of speaking with Consultant Paediatric Neurosurgeon Mr. Jay Jayamohan. This was a very pionient and moving conversation about the importance of 'Empathy' and caring for not only the patient in ones care but the whole family.
Dr Jay works at our local Hospital, the John Radcliffe Hospital, Oxford and is also an Honorary Senior Clinical Lecturer at Oxford. He has been the star of two highly acclaimed BBC fly-on-the-wall series following the work of neurosurgeons.
Dr Jay's work breaks down into three primary areas: Paediatric Neurosurgery - tackling tumours and congenital problems in children; Craniofacial Reconstruction - working with a plastic surgeon to give babies or victims of accidents a shot at a normal life; Expert Witness - employed by the courts to help solve head related crimes or provide the case for the defence.
Jay is also the author of acclaimed book "Everything That Makes Us Human: Case Notes of a Children's Brain Surgeon". Described by Dr Amanda Brown, author of The Prison Doctor as "an inspirational book written by a truly remarkable man" and 'Extraordinary' by the The Times.
Visit our shop here to purchase a copy of the Thinking of Oscar Cookbook - Made with Love or Face Coverings. THANK YOU!
Thinking of Oscar website and contact details can be found here.
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Theme Music - ‘Mountain’
–
copyright Lisa Fitzgibbon 2000
Written & performed by Lisa Fitzgibbon,
Violin Jane Griffiths
Podcast editing - Right Royal Audio
Podcast artwork thanks to The Podcast Design Experts
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Jay (00:00):
That was a really pivotal moment where you realise that
(00:02):
however young you are, yourinherent desire should be taken
into account if you're able tounderstand it. And kids may not
understand the details ofnuances of different types of
outcomes. They sure know aboutlife or death. And when they've
been through it so many timesthey know what they're prepared
to put up with, to keep going,to keep having some quality of
(00:23):
life. And we have to always beaware that they are listening
and they are taking in and ifthey don't get listened to,
we're basically sending them toa court and making a decision
over their life without gettingthem any any involvement in it.
David (00:44):
Hello, everybody, and welcome to Episode Four of the
third season of the not miniadults podcast, pioneers for
children's health care andwellbeing. My name is David
Cole. And you've just heard JayJayamohan, who is a consultant
paediatric neurosurgeon at theJohn Radcliffe Hospital in
Oxford, UK. Once again, I'm alsojoined by my wife, Hannah. And
(01:04):
together we are the co foundersof children's charity thinking
of Oscar. This week, we have theabsolute pleasure of speaking to
Jay and the theme that we'regoing to be discussing is all
around empathy, as you mightimagine, as a neurosurgeon it is
a very important part of hiswork. Those of you in the UK may
have come across Jay when heappeared in two highly acclaimed
(01:25):
BBC flying the war documentaryseries following the work of
neurosurgeons. Jay is aspecialist in three primary
areas. Firstly, paediatricneurosurgery, where he tackles
tumours and congenital problemsin children. Secondly, cranial
facial reconstruction, workingwith plastic surgeons and others
to give babies a chance of adifferent, hopefully better
(01:47):
life. And finally, as an expertwitness employed by the courts,
the police and lawyers to helpinvestigate potential crimes, or
to analyse alleged child abusecases, we really wanted to talk
to Jay not only to discuss theamazing work that he is doing,
and the ways in which he isemploying empathy to help to
speak to both patients andparents, but also because of his
(02:09):
mission to give a voice to thosepatients, so often overlooked,
because of their age. Jay,Hello, welcome to the not mini
adults podcast, thank you somuch for for agreeing to come
on.
Jay (02:25):
Good morning. Thank you for inviting me.
David (02:28):
Jay, we'll talk a little bit about kind of how we heard
about you and your book and allthe work that you're doing. But
it'd be great if you could justmaybe start by telling us a
little bit about yourself andwhat you do and how you got
there please.
Jay (02:40):
Yes, short version is I'm a paediatric neurosurgeon. So
that's a children's brainsurgeon at the John Radcliffe
Hospital in Oxford. And I'vebeen here for 17 or 18 years.
And I sort of go through thestandard training of being a
doctor and then deciding to dosurgery during my basic surgical
(03:00):
training, and then neurosurgicaltraining. And then I after I did
that in London, and then I wentoff to Glasgow and worked there
for six years. And then I, atthat point, I realised I wanted
to do children's neurosurgery.
So then I went off to Toronto,which is one of the world's sort
of big centres for children'sneurosurgery, I spent a year
there, which was a real turningpoint, realising This is what
(03:22):
I'm really want to do. I cameback and got a job at Oxford.
And like many of us, once youget into a place, you really get
your, your group settle down,and so really have been here.
Since then, I can't really seemyself moving now until someone
puts me underneath a tree,hopefully many years from now,
Hannah (03:45):
what was so important about your experience in
Toronto? Why was it so pivotalfor you?
Jay (03:50):
It was a time when I'd done my training. We're always
learning but done, my basictraining of neurosurgery. I had
done, my exams are passed. So Ikind of knew that I was going to
become a neurosurgeon. You know,I was going to get a consultant
job somewhere. But it enabled meto really concentrate and focus
(04:12):
the mind on just kiddiesneurosurgery. The set up in
Toronto for children'sneurosurgery is very intense,
highly academic, which I'm not.
But it enabled me to see thelevel of academia that you can
do if you want to do that. Lotsof operating, fantastic bosses.
I did have fantastic bossesbefore, I should say in case any
(04:33):
of them are listening. But Iwent by myself. So I left my
fiance in Glasgow, and she wasdoing a PhD. So off I went and I
basically could just live in thehospital and a small pub around
the corner. And between thosetwo, I could spend a year just
doing children's neurosurgery,which was really what I wanted.
I didn't have to think I need tobe somewhere else or do
(04:56):
something else. Not that Ididn't miss my field search at
all. Have a case she's listeningin. But you know, when you are
doing something, and you're soengrossed in it, that you don't
really realise what's going onaround you. And sometimes if
you're reading a book, you know,you don't realise that
everyone's gone, and the lightsare all off. And you there's one
light on there. And actually,that was, for me, it was like a
(05:18):
year of that. And it just wentpast without me realising it. It
was an amazing year.
Hannah (05:24):
was an amazing experience to have been able to.
I don't mean it was selfish. Butas in just to be able to devote,
there are very few moments inyour life, when you can really
invest in yourself like that.
Jay (05:37):
It was. Lots of people go off and travel after their A
levels. And you know, or take agap year, I didn't do that I
basically spent my entire lifefrom school onwards, just moving
almost one day to the next fromone job to another. So the
maximum I ever had off betweenjobs was a Friday to a Monday, I
(05:58):
just went from job to job to joband never took any time out. I
never really travelled aroundthe world, I went on wee little
holidays, but never reallytravelled around the world to
find myself. I never reallyfound the need to do that. But
what was interesting was, Icould realise that this is now
on the cusp of becoming aconsultant being in charge,
having all the responsibility ofbeing the person in charge of
(06:20):
looking after a little person.
And so this gave me a year toreally polish my armour, sharpen
my sword. Before I in my mindwent into independent battle.
David (06:33):
I think I heard you actually on the Chris Evans
Breakfast Show, I think that'swhere I first first came about
you and you were talking aboutyour work everything that makes
us human. And I remember justkind of stopped in the driveway,
just dropped the kids off atschool and listening to what you
had to say. And then when Imanaged to, you know, pick up
the book and find it there wasvery early on, there was a there
(06:54):
was a line that you said or acouple of sentences that you
said that I'm just going to readout, which made me just know
that we had to try and get youon here. And if you don't mind,
I'm just going to read them,which is I became a doctor to
save lives. I became aneurosurgeon, because I believed
it to be the highest achievementin medicine. I became a
paediatric neurosurgeon to givea voice to those patients. So
long overlooked because of theirage, to give them a life, to
(07:16):
give them a chance, to give themrespect. I'm quite emotional
kind of reading that, becausethat's what we, I guess, trying
to do from a charitableperspective. But that is such
powerful words and such powerfulkind of vision that you took on
and wrote down there.
Jay (07:30):
Yeah, it wasn't an instant decision. Clearly, each of those
have happened at a differentpoint in time. But each of those
decisions have, again allowed meto focus and concentrate the big
soup that is wanting to helppeople into Well, how do I do it
in the best way that I've gotskill to do? And not everybody
(07:51):
can do it the same way? How do Iuse my skills and abilities to
do the best I can for the peoplewho I really see as needing my
skills again, of course, I'mgoing to say that children are
the most important. But somebodywho does adult work, equally has
a valid argument for that. EveryAdult was somebody's child at
(08:11):
some point. So it crosses over.
But for me, I felt that, youknow, having heard so much
discussion about the need to goback if we think back to why
people concentrate on certainjobs. So if I just divert for a
second, think about when you dosurgical training, we used to do
surgical training, everybody hadto do general surgery, and
(08:33):
everybody had to do A&E,basically, the reason why is if
there's a war, if there'sessentially an adult orientated
world, which is, let's face it,not a pleasant one, this is what
you need surgeons to be able todo is to be in the field and
treat abdominal thoratic wounds,and do emergency work. That's
how all of surgical training wasdesigned from war time. And for
(08:56):
so many years, it just seemedthat kids just kind of got the
bottom end of that deal. Becausethe investment was never in
children's services because ifyou really get down to it. If
you save children's lives, theydon't automatically go on to
make money for the state. If youfix a broken leg on a 25 year
(09:17):
old, they're going to go backand own taxes and give money
back to the state. So if youlike they're going to pay for
their medical treatment by goingback and working. Most children
especially again, neurosurgicalchildren, lots of neurosurgical
children. They never really earnhuge amounts for the state, may
get jobs that pay taxes, butwill always be slightly lower
(09:41):
than the average amount of taxincome for various reasons. It
doesn't mean that what they dois going to be any less
important for them or forsociety, but financially,
they're going to be lower. Andthat means that kids get pushed
to the side when money isallocated. So I felt that
(10:01):
natural sense of injustice as towhy should kids who haven't done
the bad things in the world getthe bum end of the deal when it
comes to allocation. So again,it's that thing that kids don't
get a voice. And that's inmedicine that's in society,
that's a home. If I think aboutmy personal experience, I was
(10:23):
once I was telling up one of mykids, and my wife said, we
really should try not to dothis, because we would never
talk to adults, the way we talkto kids, we would never treat
adults the way we treat kids,because you'd get punched in the
face by most adults, if youshout at them. And you certainly
wouldn't expect them to do whatyou say. So why, why do we do
that to kids, and that there'sthis thing that goes through
(10:45):
society, I think that kids arestill to some extent, to be seen
and not heard. And that I wantedto get into that and make them
heard.
Hannah (10:55):
I told our three year old off yesterday morning,
because he'd been in and out ofour room since 4:30am, telling
us his bedroom was boring. Soonce we've come into the hours
of the day that we were meant tobe spending time with him, I was
a little groggy, and justfrustrated. So I tried. So I
told him, I first thing, Leo,tomorrow when you wake up, if
(11:15):
you wake up in the nightrollover, go back to sleep, then
you won't be bored, becauseyou'll be asleep. So I told him
my first thing, and then later,an hour later, I'm still groggy,
and I repeat this in front ofour eldest. And Leo instantly
objects and said, but Mommy, youtold me, You know, I said, Sorry
about this already. But it isthe point that you've just like
he was justifiably objectingthat, you know, I was bringing
(11:39):
this subject back up when he hadalready addressed it. So I hear
what you're saying it's fresh inmy mind.
Jay (11:45):
It's a painful lesson, isn't it? When you realise that
that's actually asked that we dothat without even thinking as
parents and as not usually foranybody else's kids? Or where
you'd quite like to sometimes,but we do, we run that strict
hierarchy. And then we objectwhen society runs strict
hierarchy on kids, but it justreflects what we do ourselves,
(12:06):
doesnt it.
David (12:06):
it? One of the the interesting things, I think
synergies around some of theconversation are quite a lot of
conversations that we've had,that you are kind of portraying
is empowerment. So you know,empowering the child its just a
constant thread that we havethrough many of the
conversations that we have. Andthat is a big thing for you as
well, right? So you want to makesure that if a child is able to
(12:27):
understand what is happening tothem, then then you're able to
try and convey that to them andgive them the opportunity to
really understand Can you talk alittle bit about that,
Jay (12:36):
Really important is avoiding the automatic
assumption that a child orsomebody who has different
abilities from everybody else,is not able to comprehend and be
involved in decision making. Andthat's, I can't remember if I
did talk about it in the book ornot. But there was a wee kiddy
(12:58):
that we talked over this patientfor a good 10 minutes about a
tumour that had come back, I wasI was essentially going to kill
them, whether we may havethought about trying to do this
operation. And was it fair? Wasit going to be too painful and
difficult for the child to bear?
And the parent was barringtowards No. And we were barring
(13:19):
towards No. And eventually,after about 10 minutes of this
conversation, where we werebasically settling on no and
this kid said, Can I can I saysomething? I said, Oh, yeah. And
this is your, I'll probablystart weeping when I say it. But
this kid just looked at theparents who asked and they said,
I want to live. Because that wasa really pivotal moment where
(13:40):
you realised however young youare, your inherent desire should
be taken into account, if you'reable to understand it. And kids
may not understand the detailsof nuances of different types of
outcomes. But they should knowabout life or death. And when
they've been through it. So manytimes, they know what they're
prepared to put up with, to keepgoing to keep having some
(14:02):
quality of life. And we have toalways be aware that they are
listening and they are taking inand if they don't get listened
to. We're basically sending themto court and making a decision
over their life. Without gettingthem any any involvement in it.
It's really important. And thenyou move on from that young
child to an area which I hopewe don't do but which I know
(14:26):
does happen is that if you havedifficulties in expressing
yourself, if you're physicallyunable to express yourself with
words, or with very clearactions, there's an automatic
assumption that that means youcan't understand. And again,
this happens even to older kidsand adults, where people make
(14:46):
decisions for them. Whilethey're able to hear understand
what's going on. And if you justwait or give them a different
way, you can get theirinvolvement and they should have
that autonomy needed to be ableto make those decisions? And we
take that away from people whohave different abilities as
well.
Hannah (15:06):
You've just touched on the answer to my question, but
I'm curious to understand a bitmore. You said that for older
children, or were they maybeit's harder for them to express
themselves? And one of myquestion is about the methods
that you've developed to, youknow, solicit their points of
view and one that you'vesuggested a minute ago was time,
you know, how else have you madethat work, so that you feel that
(15:28):
they're being respected andheard?
Jay (15:30):
Well, with kids, the first is you, you've got to talk to
them, you sometimes you have totalk to the parents about more
build risks and benefits thatthey won't understand. But at
some point, and a fairly earlyon, you need to talk to them in
a way that they can understand.
And then they feel that they'repart of the conversation.
They're part of the team, tryingto fight whatever the illnesses
(15:52):
that they've got, if they're notpart of it, then they're not
fully psychologically engaged init. And we know that being
psychologically engaged intreating illness is hugely
important in recovery. If yougive up, you tend to do worse
than if you say, and I'm goingto really, I'm going to fight
this. And we know that. So youtalk to them, you talk to them
(16:13):
at their level. And again, ifyou think about what it must be
like to lie in a bed, and havefour or five, six foot giants
stand around you talking in away that you may catch a few
words, which are probably themost terrifying words. You know,
for me, the words must be thingslike tumour, operation, scar,
(16:34):
for older kids, all of thesecatching these words, but not
really getting the gist of whatthe rest of the conversation is.
Well, that's got to be prettyscary. If you were an adult in
that situation, you'd be utterlyterrified. Imagine being a kid.
So you get down, get down totheir high physical height, make
(16:55):
eye contact, and then they knowthat you are talking to them,
not about them. And I thinkyou've once we do that, it can
usually mean that when you thentalk to them that they know that
you are talking to them notabout them. And they can trust
you. So you also have to be ashonest as you can be to them. So
(17:16):
I tell my patients, I tell mykids, that it's going to hurt,
when they wake up, it's going tobe sore, we'll give you lots of
painkillers, we'll make it aslittle soreness as possible, but
it is going to hurt. There's nopoint in saying to kids, it's
not going to hurt, because we'regoing to wake up with a scar
from ear to ear, you know what,it's going to hurt. But again,
(17:39):
we tell them that and I say tothem, that means that when you
wake up, and it does hurt, youremember that Mr. J said it will
get better. And again, it'sabout them saying, Oh, yeah, he
told me it would hurt. But healso told me that it will be
better by tomorrow. And oncethey know that you are telling
them a big true, they will takecomfort and benefit in knowing
(18:02):
that it will get better. Whereasif you say to them is not going
to hurt, and then it hurts. Whyshould they trust you, that you
tell them is going to get betterby the next day or by the next
week? Or if they have aweakness, you say look, it may
well be weaken your arm, whatwe'll do lots of physio, it may
take weeks, but it is probablygoing to get better. And if it
doesn't, we'll work around it,then they're part of the
(18:24):
conversation there. They knowwhat's going on. And that always
ends up with a better outcome.
David (18:31):
There's a code I think that you have, you know, code
review, if you will, withinsurgery, which is watch one, do
one, teach one right, which Ithink we've you know, heard a
few times. But is, first of all,it was interesting to understand
that and just you know the kindof nuance of that of how that
works. But I'm hoping that thathas also happened when it comes
to that kind of bedside mannerand the compassion elements of
(18:53):
it and teaching your kind ofstudents as it were, or the
medical students coming throughhow to have that interaction as
well, because I think, I don'tknow, maybe it is maybe it's
not, but it feels like it's arelatively new way of, you know,
being able to think about howhow one discusses what's going
on with children and thatempowerment element of it. And
the reason I say or maybe guessthat is because we're starting
(19:14):
to see technologies to try andhelp with that element to try
and empower the child to try andbring them into the decision
making process more than theyare already.
Jay (19:24):
Definitely kids adopt technology so fast, that we are
struggling to keep up to be ableto make the apps or make the
devices to keep up with theirability to use them. So the
answer to your first question isyes, absolutely. We don't do see
one, do one, teach one any morethank goodness. You see a lot,
(19:47):
you do a lot and then you startto do them by yourself. So it
there's much more oversight ofwhat happens in the operating
theatre from the more seniormembers of the of the team than
they used to be. But we do Wardrounds with our trainees. And
they're involved in theconversations, they hear how we
do it. And you'll hear differentways from different people. And
(20:08):
it's not the one person's isright. But what you get to do is
by doing as many Ward rounds,and as many of these in depth
difficult conversations, you getto start to pick and choose bits
from each of your bosses and go,I like the way they did that. I
like the way they did that. Ididn't like that. So we'll get
rid of that one. But you canstill take positives from
everyone that you learn from,and then you build up your own
(20:30):
style. But I think as long asthe style respects the patient,
and gives them a voice in it,it's fine, how you want to do
it, you know, some of mycolleagues are much more, nicely
patriarchal, so much more about,don't worry, I'll sort it, it'll
be fine. If you genuinely can dothat, with honesty in your face,
people will go with that systemas well. That's not usually my
(20:54):
method, I'm a bit more of a ofan equal conversationalist but
it's not the ones better be onthe others worse, doesn't
matter. As long as the patientand the parents feel that
connection, feel that trust,feel that unspoken, signing on a
contract that you do, when youlook the parents and the child
in the eye and you tell themwhat you're going to do, you're
(21:16):
making a contract there, youknow, you are signing on the
dotted line with that familythat you will look after that
child as best as you possiblycan, however you do it, you've
got to be able to make sure thatyou make that contract. And
you're right, using technologyto help kids involved in that.
So there's watching things aboutoperations, watching, you know,
(21:37):
animated versions of treatments.
Understanding and reading,enables you to have a thought
about what questions you want toask the health professional when
you finally meet them, or whenyou meet them for the second
time if need be, there'sdownsides. Because there can be
unregulated education on theinternet, some of which can be
very wrong. But we usually tryand send them to various
(21:58):
websites that we know or aretrustable. But technology is
here and can only help toeducate and education lowers
anxiety, education, lowerstress, it's got to be good for
the kids.
Hannah (22:13):
I know that one of the areas that David was wanting to
cover this afternoon was aroundthe role of technology, not just
for aid in communication withthe children, but practically,
perhaps in the operating theatreas well, just in an angle that
you've been thinking about wasto what extent can technology
reduce risk of some of thesecomplex procedures, but the sort
(22:36):
of flip side of that that I wasalso curious about was in a when
you're talking about innovationand new technology, then there
is also some inherent riskthere. And you know, when you're
in the most vulnerable ofvulnerable situation dealing
with children and neurologicalissues. So in my mind, that's a
(22:57):
very delicate space to be Imean, working and not operating.
And then how have you been ableto pull technology in ways that
you're comfortable with whereit's the the potential that it
lends to you goes far beyond anyconcerns that you might have, by
the fact, by virtue of the factthat it is a new way of doing
(23:19):
something?
Jay (23:20):
Yeah, the additional levels of technology that are being
promoted to, for example, us asneurosurgeons is exponentially
increasing, and not always forthe better. So I have driven my
car into what was quite clearlya field, because the satnav told
me to turn right. And my wifesaid, I wouldn't turn right if I
(23:42):
was here that looks like afield. But I said her but
satnav, I mean, it was a Volvo.
So I don't know how it told methat lie, but it did. And I
think we, we all have a naturalability to switch off our own
thought processes and trusttechnology. And what we have to
do when we're doing operations,is be very sure that you use
(24:06):
technology along with yourhighly trained knowledge that
you have, and constantly bechecking that what it's telling
you is correct, and is the bestthing for the patient. If we
think about the technology thatwe use now, for example,
guidance in theatre, basicallya satnav for the brain when
(24:27):
we're doing an operation. Nowthat indeed can help us to
remove all of the brain tumouror to get a tube into the
correct part of the brain.
However, the decision makingabout how much of that tumour
you want to take out, cannotrest just on, this as the
abnormal area and therefore wewant to take it all out, it's
(24:48):
having a knowledge about thepathology? What is sort of
tumour is it? Do we need to takeit all out? Or is it something
we can leave a bit in and treatwith another way, but also about
that relationship you have withthe patient. What a concert
level pianist may choose isdifferent from what somebody who
works as a shelf stacker inSainsbury's may choose from the
(25:12):
point of view of risk benefitfor it. Not so much as a
children's neurosurgeon. Butwhen I was a trainee, I remember
that very example, because wehad a concert level pianist who
chose and said, Do not go forthis bit of tumour, if you think
it's likely to cause me to beunable to play the piano,
(25:34):
because if I can't play thepiano, I might as well not be
here. And I am willing to take ashorter lifespan with my piano
than a longer lifespan withoutwhether we agree or not. If you
don't know the patient, youhaven't taken time to talk to
them. It's just another tumour,let's get the tumour out, let's
take it all out. But that again,removes the autonomy from the
(25:58):
patient to make that decisionabout what they're prepared to
do. And, you know, we've takenon and we said, we will fix you,
but they didn't ask to be fixedin that way. So you need to have
that conversation to know whatthe personalised. It's a big
thing, isn't it personalisedtreatment. And that goes right,
the way down to it comes down tothe fact you need to know your
(26:18):
patient, to be able to have thatconversation and make that call
with them.
Hannah (26:23):
Only in recent years, I've really understood the value
or power of judgement andinstinct. Because before this
moment of realisation for me,which was actually related to
Oscar, I had just seen that as Iwould have said, that a
reference book or a computer orsomebody with a different job
(26:43):
title, to me that was rated inthe field, that that fact coming
out of those sources would be ofgreater value than my judgments
coming or my perspective comingfrom instincts or judgments. And
I know now that that's not thecase, and that these, the
instincts and judgement are, ina sense, many, many data points
formed over 10 or 20 years in mylife that have validity. Of
(27:09):
course, that's furtheraccentuated when yours is very
specific training that's come tobear, but it's a useful life
lesson that you can apply beyondtheatre.
Jay (27:20):
It is, but it's also, it's the reason why you can't, for
some conditions, you can, butfor the majority, especially
surgical, you can't use acomputer yet to do that. You can
use a computer, you can use AIto show you the abnormality, but
you can't yet use AI to decidehow you're going to treat it
(27:41):
best for that particular person.
You can't use it to be able tohave a conversation with a
person about what risk benefitratio they are prepared to take
for any particular treatment.
And until you do that, until AIis so far advanced that they can
have that conversation. And itcan make analysis far beyond
what we rely on which is havinga relationship that they can
(28:03):
trust us and tell us the truth.
But also being able to gaugeWell actually, we've not really
been able to look them in theeye. While you've been saying
this. Are you sure this isactually how you feel? Or are
you just going along with it?
And getting that sense of arethey telling you what they
actually want to do or not. Andof course AI is coming in. It's
coming in a rather nefarious waythat I've been reading about,
(28:24):
you know, looking at pupils, andsweatiness when they're
interrogating prisoners, buteventually that will come down
to a hospital setting wherewe're talking to patients and
wondering if they're telling usthe truth or on using that
information. But until thatcomes, which is probably a long
way away, it is about thepatient trusting us enough to
tell us what they honestly thinkrather than what they think we
(28:45):
should be told. And I can't seethe time in my life span that a
computer will be able to dothat.
David (28:52):
I'm gonna I'm gonna try and do a kind of, you know, link
here between, you know, sowe're, we've both been I've
worked in AI, currently, Hannah,Hannah has worked in AI and
looks at it. And I think wecertainly recognise that in
order for AI to really be thebest it can be. And one thing
that AI will never be able to doand what we've really kind of
(29:12):
the substance. And I guess theunderlying theme of this
conversation is around empathy,and understanding, you know, the
patient in front of you, thechild in front of you, the
family in front of you. And wewere discussing just before we
kind of pressed record, thatelement of how important it is
to be able to really kind oftrying to step back and
understand more about peoplearound you and what they're
(29:36):
going through and having thatkind of empathy and
understanding around andcompassion I guess just you
know, generally, and I knowthat's a topic pretty close to
your heart.
Jay (29:46):
It is look AI is going to get here. But I think back to
real basic AI. It's not veryhigh. But my kids used to have
this, it was a seahorse with arubber tummy, if they woke up at
night, they've pressed thetummy. And it would do a little
glowing light and play a littlesong. So there is a an
(30:08):
interaction between a human andthe machine that the human told
the machine, I am feeling sad,or distressed, or I need
soothing. Right now, okay,granted, it was a one year old
human, but they were still ableto tell the machine that by
pressing its tummy, and themachine was able to respond by
doing the correct soothingactions to help that person.
(30:32):
That's a very basic, but thatis, it is artificial, and to
some level is intelligent. Now,you're going to have to go
exponentially higher to be ableto do what we would like it to
do for our patients. But it willget there, it will get to the
point where it will be able tounderstand enough to be able to
(30:53):
come up with a conversation thatwill probably serve that person
to some level. It's all beingmade by a human and learned from
a human, it hasn't learned it byitself. But it will come. And
that's not a bad thing. It's nodifferent from putting on
classical music, when you'refeeling anxious or me putting on
(31:14):
techno, if I wanted toconcentrate that's AI, some
level, it will come. But itneeds a human to put the
information into thatintelligence. And it's what
information it puts in, it's theprogrammer, that will become
absolutely vital. If youprogramme the computer to be
(31:34):
harsh and cold. And to tellpeople to just get on with it,
it will be a fascist AI. If youprogramme it to be much more
gentle, and have much longertime to be able to hear answers
and not log off and not startthinking you know, I can't hear
you say it again, well, thenyou're gonna have a more caring
(31:55):
machine. So it all comes down towhat the person is thats doing
it. It's the same as whetherit's a human who's a horrible,
uncaring human or a caringhuman. They're just putting that
into a machine. And then thatinterface will reflect the
programme.
Hannah (32:11):
And taking the technology aside again. And one
of the conversations we werehaving before we press go on
this podcast was around how wedeserved more kindness in the
world during the peak of COVID.
And how people were givingothers, where being more
generous as others are goingaround their day to day work.
(32:33):
But that was something that youhad a point of view on your in
your professional role around,you know, not knowing not
knowing what's going on insomebody else's life, could you
talk for a moment around, youknow, when you're thinking about
empathy and how you communicatewith your patient, it's not only
the child that you're concernedwith that, but there would be
(32:55):
others, other stakeholders thatyou're looking out for?
Jay (33:00):
Yeah, you are not just treating the child, you are
always treating the family, aswell as the child and taking
them on the journey. The childis the Centre for the parents as
well as for you. But the parentsare the next ring out. And if
you don't take them with you,the child will pick up the child
realises the parents don't trustyou, then the child's not gonna
(33:23):
trust you. And so we have aselfish responsibility to do it.
But also we have a caringresponsibility to make sure that
parents understand what theirchild is going to go through and
be ready for it, it reflects asociety issue of being able to
put yourself in someone else'sshoes, as we were saying people
(33:43):
did do for a while, and are nowstopping doing is my experience.
They are now looking intothemselves into what do I get
out of it? What's best for me,not what's overall best or
what's fair or what's right.
It's about what is best for me.
I try not to be political, butto me. It's reflecting all parts
(34:06):
of society, from our government,right the way down. We're being
encouraged to think aboutourselves much more than we are
about society. And we will bemuch worse off with that
decision that the countryappears to have already made. To
go back to that. Literally juststopping and waiting
permanently. I try and thinkabout this all the time. I think
(34:30):
if you see somebody who'sdriving very slowly, who's
really at the roundabout and isnot able to get going and a gap
that you think well. Of courseyou can do that. Well, perhaps
they've left they're really sickspouse or child at home or going
(34:50):
to work perhaps they're going tohospital for chemotherapy.
Perhaps they have a good friendwho's overseas who's desperately
sick and they can't get to seethem because they can't travel,
perhaps lots of things. Perhapsthey're thinking how the hell am
I going to fill my car up withpetrol? Because I've got no
money. And how am I going tofeed my kids tonight, it's being
able to think about how noteverybody in that queue waiting
(35:14):
to do with that roundabout, isfinding it as easy or as
straightforward as you are thatday. I was I was once in a
queue. And there was a turn outto be a colleague of mine, a
surgeon who was in a largePorsche, four by four behind me.
And I was pretty tired. And I'dhad a, you know, some
(35:35):
difficulties with some patients.
And I was quite tired. I wasjust waiting to leave and I
wanted to pick it up. I didn'twant to try to freak out. And he
started horning. And I didn'trealise who he was. And I wigged
out, I should never do this,advising anybody to this, but I
got out of the car. And I wentaround and I said, What is up?
What is the matter? He said, Oh,you could have gone there. I
(35:56):
said, so what? what was going tohappen? I waited. But if that
had been my 81 year old dad, atthat cue, he would have jumped
with his car, panicking becausesomeone's falling behind him.
And he may have had an accident,because his I mean, he does not
go fast at the best of times,and he could have easily had an
accident. And what would thathave gained, you would have
(36:18):
gained you the phrase I used Iwork for now, but it would have
gained you not very much. Sojust take a breath, I shouldn't
go back to my car and I went,but it just encapsulates how we
can be super caring. I mean, getin a car, or we can go to the
pub, or we can do lots of otherthings and disconnect our caring
side and become a real chumpagain, I can be a real chump as
(36:43):
well, let's not beat around thebush there but what I'm trying
to try and bring a more caringpart to everything I do. And I
think if we all do that a weebit we will be better overall.
David (36:57):
There's one thing I want to talk to you about before I
kind of ask you what, what tendsto be our last question, which
is around and it's coming backto what you talked about in
terms of just, I think, bringingeveryone in and thinking about
everyone, but when you bringyour team together within the
operating theatre, and thecollaboration and what have you.
So first of all, you've touchedon it, but you have we already
talked about but you'd like tohave loud blaring music and just
(37:20):
from a concentration point ofview. But the more important
aspects for me is that culturethat you bring to allow
everybody, you know, the kind ofmeritocracy of anybody can speak
up if they see that something'sgoing wrong. And to me, that's a
really important lesson that weshould, you know, at least
hopefully get out to thelisteners.
Jay (37:37):
Yes, I mean, be clear that's not just me, that's
instilled into I think everybodynowadays, in hospitals is the
ability to speak up if you thinksomething is not right. But
also, I guess, you've got to gobeyond that and actually have a
relationship with other people.
So knowing the names of thenurses, knowing the names of the
porters, if you know eachother's names, you're much more
(37:59):
likely to say something than ifthey go or there's that person
who I can't really speak tobecause they're the surgeon, and
I'm, quote, unquote, just theporter, well actually
everybody's there looking afterthe patient, and everyone wants
the same thing, which is thepatient to do well. And while I
probably I think probably mostpeople who know me will say that
(38:21):
I run a democratic system, it isslightly autocratic when we're
operating, I think that there'sthere's a time and a place for
it. And it's people knowingthere's a difference between
being a leader and being anautocratic leader. And I hope
that I can do one without doingthe other. So you have to lead,
(38:41):
you're in charge, you're thesurgeon, the consultant surgeon.
And along with youranaesthetist, you are very much
running the show in thatoperating theatre. Officially
it's the scrub nurse who's incharge of the operating theatre.
So officially, the scrub nursecan check us out if they want
to. As a junior, that certainlyhappened. But they weren't. If
you're the person doing theoperation, you're a team. And
(39:04):
the less experienced or the morejunior staff will look to you in
a crisis. So the first thing isyou do have to be a leader in
that you need to be able to leadwhen everything hits the fan, as
well as when everything's goinggreat. And at that point, you've
got to be able to say, right,this is what we're doing. This
is how we're doing it, you dothis, you do this, you did this.
(39:24):
But to avoid getting into thatsituation, you want everybody to
be able to feel to say,Actually, I don't think this is
right. I'm not sure about that.
Are you sure about this? Andagain, it's being able to say to
him, if you see me doingsomething wrong and I verbalise
this to my team a lot. If yousee me doing something wrong,
(39:45):
don't wait and go. Yeah, Ithought that was a bit odd. You
know, a baby, you knew whatyou're doing. No, tell me and if
I'm alright with it. I'll saythat actually, yeah. Now I know
it's a bit unusual, but forthese reasons I wanted to do
that bloody hell your rightthanks very much. Let's look at
the other side of the patient'shead. And maybe we'll it will be
an easier operation. right downto the basics of checking the
(40:07):
side is everybody happy, this isthe left side of the head, look
at the scan, that's the leftside of the head, real basic
stuff, and everybody can get itwrong, which means everyone can
help to avoid a mistake.
David (40:21):
Thank you. I was I, as I said to you, I think before we
came on, I'm a bit of a kind ofnerd when it comes to the
leadership side of things. So Idid want to get that across. But
it's been so fascinating talkingto you. And we could absolutely
go on forever. But I'm sure thatyou've got very important things
to be doing, so our kind offinal question that we asked to
everyone is, if you could, ifyou could change anything within
(40:43):
child health, withinpaediatrics, what would it be?
If you had that kind of magicwand?
Jay (40:49):
It probably wouldn't be within a hospital framework, but
it's recognising how theenvironment that children are
brought up in at home is themost important thing to how
children's health will be longterm. So food, nutrition, love,
a roof, things that not all kidshave, even in Britain. That's
(41:13):
the most important thing that wecan do for our kids. What I do,
the stuff that I do is highfaluting fancy, expensive, but
in brutal terms, small numbersof children. And while what we
do is really important, becauseit's what sets us up as an
advanced society caring aboutthe weakest, we haven't even
(41:35):
done a very good job of justcaring about kids full stop, you
know, hungry children, andunloved children uneducated
children. This is happening inBritain in 2021, which is a
shocker. Frankly.
David (41:51):
I don't think we could obviously disagree with that in
the in the slightest. And one ofthe things that, you know, we're
trying to do with this with thispodcast is to highlight some of
those areas and try and sharestories of people that are
trying to do things differently.
So thank you so much for yourthank you for everything that
you do, first of all, and forjoining us today. Thank you for
(42:11):
sharing your thoughts and yourexperience. And, you know, we're
really grateful for your time.
Jay (42:18):
My pleasure. Thank you very much for having me.
David (42:24):
Thank you so much to Dr.
J for joining us this week. Asyou would have heard, it was a
pretty emotional conversationboth for him and us, given the
work that he does, but also thereasons behind the job that he
has, why he is doing it and whythat's so important. We really
do feel humbled to speak toamazing people like Jay and we
really hope that you are gettingas much out of these
(42:46):
conversations as we are nextweek. We're speaking to Richard
Hebdon who is the director ofhealthcare and Life Sciences for
the British government'sinnovate UK department. I'm
delighted to say that we will bediscussing with him how he is
helping to support Child Healthand bring more innovation and
finances into Child Healthinnovation. We really hope that
(43:08):
you can join us then please dosubscribe to the podcast. And if
you're enjoying it, please doleave us a review as well. We
hope you'll join us again nextweek.
That was a really pivotal moment where you realise that
(00:02):
however young you are, yourinherent desire should be taken
into account if you're able tounderstand it. And kids may not
understand the details ofnuances of different types of
outcomes. They sure know aboutlife or death. And when they've
been through it so many timesthey know what they're prepared
to put up with, to keep going,to keep having some quality of
(00:23):
life. And we have to always beaware that they are listening
and they are taking in and ifthey don't get listened to,
we're basically sending them toa court and making a decision
over their life without gettingthem any any involvement in it.
David (00:44):
Hello, everybody, and welcome to Episode Four of the
third season of the not miniadults podcast, pioneers for
children's health care andwellbeing. My name is David
Cole. And you've just heard JayJayamohan, who is a consultant
paediatric neurosurgeon at theJohn Radcliffe Hospital in
Oxford, UK. Once again, I'm alsojoined by my wife, Hannah. And
(01:04):
together we are the co foundersof children's charity thinking
of Oscar. This week, we have theabsolute pleasure of speaking to
Jay and the theme that we'regoing to be discussing is all
around empathy, as you mightimagine, as a neurosurgeon it is
a very important part of hiswork. Those of you in the UK may
have come across Jay when heappeared in two highly acclaimed
(01:25):
BBC flying the war documentaryseries following the work of
neurosurgeons. Jay is aspecialist in three primary
areas. Firstly, paediatricneurosurgery, where he tackles
tumours and congenital problemsin children. Secondly, cranial
facial reconstruction, workingwith plastic surgeons and others
to give babies a chance of adifferent, hopefully better
(01:47):
life. And finally, as an expertwitness employed by the courts,
the police and lawyers to helpinvestigate potential crimes, or
to analyse alleged child abusecases, we really wanted to talk
to Jay not only to discuss theamazing work that he is doing,
and the ways in which he isemploying empathy to help to
speak to both patients andparents, but also because of his
(02:09):
mission to give a voice to thosepatients, so often overlooked,
because of their age. Jay,Hello, welcome to the not mini
adults podcast, thank you somuch for for agreeing to come
on.
Jay (02:25):
Good morning. Thank you for inviting me.
David (02:28):
Jay, we'll talk a little bit about kind of how we heard
about you and your book and allthe work that you're doing. But
it'd be great if you could justmaybe start by telling us a
little bit about yourself andwhat you do and how you got
there please.
Jay (02:40):
Yes, short version is I'm a paediatric neurosurgeon. So
that's a children's brainsurgeon at the John Radcliffe
Hospital in Oxford. And I'vebeen here for 17 or 18 years.
And I sort of go through thestandard training of being a
doctor and then deciding to dosurgery during my basic surgical
(03:00):
training, and then neurosurgicaltraining. And then I after I did
that in London, and then I wentoff to Glasgow and worked there
for six years. And then I, atthat point, I realised I wanted
to do children's neurosurgery.
So then I went off to Toronto,which is one of the world's sort
of big centres for children'sneurosurgery, I spent a year
there, which was a real turningpoint, realising This is what
(03:22):
I'm really want to do. I cameback and got a job at Oxford.
And like many of us, once youget into a place, you really get
your, your group settle down,and so really have been here.
Since then, I can't really seemyself moving now until someone
puts me underneath a tree,hopefully many years from now,
Hannah (03:45):
what was so important about your experience in
Toronto? Why was it so pivotalfor you?
Jay (03:50):
It was a time when I'd done my training. We're always
learning but done, my basictraining of neurosurgery. I had
done, my exams are passed. So Ikind of knew that I was going to
become a neurosurgeon. You know,I was going to get a consultant
job somewhere. But it enabled meto really concentrate and focus
(04:12):
the mind on just kiddiesneurosurgery. The set up in
Toronto for children'sneurosurgery is very intense,
highly academic, which I'm not.
But it enabled me to see thelevel of academia that you can
do if you want to do that. Lotsof operating, fantastic bosses.
I did have fantastic bossesbefore, I should say in case any
(04:33):
of them are listening. But Iwent by myself. So I left my
fiance in Glasgow, and she wasdoing a PhD. So off I went and I
basically could just live in thehospital and a small pub around
the corner. And between thosetwo, I could spend a year just
doing children's neurosurgery,which was really what I wanted.
I didn't have to think I need tobe somewhere else or do
(04:56):
something else. Not that Ididn't miss my field search at
all. Have a case she's listeningin. But you know, when you are
doing something, and you're soengrossed in it, that you don't
really realise what's going onaround you. And sometimes if
you're reading a book, you know,you don't realise that
everyone's gone, and the lightsare all off. And you there's one
light on there. And actually,that was, for me, it was like a
(05:18):
year of that. And it just wentpast without me realising it. It
was an amazing year.
Hannah (05:24):
was an amazing experience to have been able to.
I don't mean it was selfish. Butas in just to be able to devote,
there are very few moments inyour life, when you can really
invest in yourself like that.
Jay (05:37):
It was. Lots of people go off and travel after their A
levels. And you know, or take agap year, I didn't do that I
basically spent my entire lifefrom school onwards, just moving
almost one day to the next fromone job to another. So the
maximum I ever had off betweenjobs was a Friday to a Monday, I
(05:58):
just went from job to job to joband never took any time out. I
never really travelled aroundthe world, I went on wee little
holidays, but never reallytravelled around the world to
find myself. I never reallyfound the need to do that. But
what was interesting was, Icould realise that this is now
on the cusp of becoming aconsultant being in charge,
having all the responsibility ofbeing the person in charge of
(06:20):
looking after a little person.
And so this gave me a year toreally polish my armour, sharpen
my sword. Before I in my mindwent into independent battle.
David (06:33):
I think I heard you actually on the Chris Evans
Breakfast Show, I think that'swhere I first first came about
you and you were talking aboutyour work everything that makes
us human. And I remember justkind of stopped in the driveway,
just dropped the kids off atschool and listening to what you
had to say. And then when Imanaged to, you know, pick up
the book and find it there wasvery early on, there was a there
(06:54):
was a line that you said or acouple of sentences that you
said that I'm just going to readout, which made me just know
that we had to try and get youon here. And if you don't mind,
I'm just going to read them,which is I became a doctor to
save lives. I became aneurosurgeon, because I believed
it to be the highest achievementin medicine. I became a
paediatric neurosurgeon to givea voice to those patients. So
long overlooked because of theirage, to give them a life, to
(07:16):
give them a chance, to give themrespect. I'm quite emotional
kind of reading that, becausethat's what we, I guess, trying
to do from a charitableperspective. But that is such
powerful words and such powerfulkind of vision that you took on
and wrote down there.
Jay (07:30):
Yeah, it wasn't an instant decision. Clearly, each of those
have happened at a differentpoint in time. But each of those
decisions have, again allowed meto focus and concentrate the big
soup that is wanting to helppeople into Well, how do I do it
in the best way that I've gotskill to do? And not everybody
(07:51):
can do it the same way? How do Iuse my skills and abilities to
do the best I can for the peoplewho I really see as needing my
skills again, of course, I'mgoing to say that children are
the most important. But somebodywho does adult work, equally has
a valid argument for that. EveryAdult was somebody's child at
(08:11):
some point. So it crosses over.
But for me, I felt that, youknow, having heard so much
discussion about the need to goback if we think back to why
people concentrate on certainjobs. So if I just divert for a
second, think about when you dosurgical training, we used to do
surgical training, everybody hadto do general surgery, and
(08:33):
everybody had to do A&E,basically, the reason why is if
there's a war, if there'sessentially an adult orientated
world, which is, let's face it,not a pleasant one, this is what
you need surgeons to be able todo is to be in the field and
treat abdominal thoratic wounds,and do emergency work. That's
how all of surgical training wasdesigned from war time. And for
(08:56):
so many years, it just seemedthat kids just kind of got the
bottom end of that deal. Becausethe investment was never in
children's services because ifyou really get down to it. If
you save children's lives, theydon't automatically go on to
make money for the state. If youfix a broken leg on a 25 year
(09:17):
old, they're going to go backand own taxes and give money
back to the state. So if youlike they're going to pay for
their medical treatment by goingback and working. Most children
especially again, neurosurgicalchildren, lots of neurosurgical
children. They never really earnhuge amounts for the state, may
get jobs that pay taxes, butwill always be slightly lower
(09:41):
than the average amount of taxincome for various reasons. It
doesn't mean that what they dois going to be any less
important for them or forsociety, but financially,
they're going to be lower. Andthat means that kids get pushed
to the side when money isallocated. So I felt that
(10:01):
natural sense of injustice as towhy should kids who haven't done
the bad things in the world getthe bum end of the deal when it
comes to allocation. So again,it's that thing that kids don't
get a voice. And that's inmedicine that's in society,
that's a home. If I think aboutmy personal experience, I was
(10:23):
once I was telling up one of mykids, and my wife said, we
really should try not to dothis, because we would never
talk to adults, the way we talkto kids, we would never treat
adults the way we treat kids,because you'd get punched in the
face by most adults, if youshout at them. And you certainly
wouldn't expect them to do whatyou say. So why, why do we do
that to kids, and that there'sthis thing that goes through
(10:45):
society, I think that kids arestill to some extent, to be seen
and not heard. And that I wantedto get into that and make them
heard.
Hannah (10:55):
I told our three year old off yesterday morning,
because he'd been in and out ofour room since 4:30am, telling
us his bedroom was boring. Soonce we've come into the hours
of the day that we were meant tobe spending time with him, I was
a little groggy, and justfrustrated. So I tried. So I
told him, I first thing, Leo,tomorrow when you wake up, if
(11:15):
you wake up in the nightrollover, go back to sleep, then
you won't be bored, becauseyou'll be asleep. So I told him
my first thing, and then later,an hour later, I'm still groggy,
and I repeat this in front ofour eldest. And Leo instantly
objects and said, but Mommy, youtold me, You know, I said, Sorry
about this already. But it isthe point that you've just like
he was justifiably objectingthat, you know, I was bringing
(11:39):
this subject back up when he hadalready addressed it. So I hear
what you're saying it's fresh inmy mind.
Jay (11:45):
It's a painful lesson, isn't it? When you realise that
that's actually asked that we dothat without even thinking as
parents and as not usually foranybody else's kids? Or where
you'd quite like to sometimes,but we do, we run that strict
hierarchy. And then we objectwhen society runs strict
hierarchy on kids, but it justreflects what we do ourselves,
(12:06):
doesnt it.
David (12:06):
it? One of the the interesting things, I think
synergies around some of theconversation are quite a lot of
conversations that we've had,that you are kind of portraying
is empowerment. So you know,empowering the child its just a
constant thread that we havethrough many of the
conversations that we have. Andthat is a big thing for you as
well, right? So you want to makesure that if a child is able to
(12:27):
understand what is happening tothem, then then you're able to
try and convey that to them andgive them the opportunity to
really understand Can you talk alittle bit about that,
Jay (12:36):
Really important is avoiding the automatic
assumption that a child orsomebody who has different
abilities from everybody else,is not able to comprehend and be
involved in decision making. Andthat's, I can't remember if I
did talk about it in the book ornot. But there was a wee kiddy
(12:58):
that we talked over this patientfor a good 10 minutes about a
tumour that had come back, I wasI was essentially going to kill
them, whether we may havethought about trying to do this
operation. And was it fair? Wasit going to be too painful and
difficult for the child to bear?
And the parent was barringtowards No. And we were barring
(13:19):
towards No. And eventually,after about 10 minutes of this
conversation, where we werebasically settling on no and
this kid said, Can I can I saysomething? I said, Oh, yeah. And
this is your, I'll probablystart weeping when I say it. But
this kid just looked at theparents who asked and they said,
I want to live. Because that wasa really pivotal moment where
(13:40):
you realised however young youare, your inherent desire should
be taken into account, if you'reable to understand it. And kids
may not understand the detailsof nuances of different types of
outcomes. But they should knowabout life or death. And when
they've been through it. So manytimes, they know what they're
prepared to put up with, to keepgoing to keep having some
(14:02):
quality of life. And we have toalways be aware that they are
listening and they are taking inand if they don't get listened
to. We're basically sending themto court and making a decision
over their life. Without gettingthem any any involvement in it.
It's really important. And thenyou move on from that young
child to an area which I hopewe don't do but which I know
(14:26):
does happen is that if you havedifficulties in expressing
yourself, if you're physicallyunable to express yourself with
words, or with very clearactions, there's an automatic
assumption that that means youcan't understand. And again,
this happens even to older kidsand adults, where people make
(14:46):
decisions for them. Whilethey're able to hear understand
what's going on. And if you justwait or give them a different
way, you can get theirinvolvement and they should have
that autonomy needed to be ableto make those decisions? And we
take that away from people whohave different abilities as
well.
Hannah (15:06):
You've just touched on the answer to my question, but
I'm curious to understand a bitmore. You said that for older
children, or were they maybeit's harder for them to express
themselves? And one of myquestion is about the methods
that you've developed to, youknow, solicit their points of
view and one that you'vesuggested a minute ago was time,
you know, how else have you madethat work, so that you feel that
(15:28):
they're being respected andheard?
Jay (15:30):
Well, with kids, the first is you, you've got to talk to
them, you sometimes you have totalk to the parents about more
build risks and benefits thatthey won't understand. But at
some point, and a fairly earlyon, you need to talk to them in
a way that they can understand.
And then they feel that they'repart of the conversation.
They're part of the team, tryingto fight whatever the illnesses
(15:52):
that they've got, if they're notpart of it, then they're not
fully psychologically engaged init. And we know that being
psychologically engaged intreating illness is hugely
important in recovery. If yougive up, you tend to do worse
than if you say, and I'm goingto really, I'm going to fight
this. And we know that. So youtalk to them, you talk to them
(16:13):
at their level. And again, ifyou think about what it must be
like to lie in a bed, and havefour or five, six foot giants
stand around you talking in away that you may catch a few
words, which are probably themost terrifying words. You know,
for me, the words must be thingslike tumour, operation, scar,
(16:34):
for older kids, all of thesecatching these words, but not
really getting the gist of whatthe rest of the conversation is.
Well, that's got to be prettyscary. If you were an adult in
that situation, you'd be utterlyterrified. Imagine being a kid.
So you get down, get down totheir high physical height, make
(16:55):
eye contact, and then they knowthat you are talking to them,
not about them. And I thinkyou've once we do that, it can
usually mean that when you thentalk to them that they know that
you are talking to them notabout them. And they can trust
you. So you also have to be ashonest as you can be to them. So
(17:16):
I tell my patients, I tell mykids, that it's going to hurt,
when they wake up, it's going tobe sore, we'll give you lots of
painkillers, we'll make it aslittle soreness as possible, but
it is going to hurt. There's nopoint in saying to kids, it's
not going to hurt, because we'regoing to wake up with a scar
from ear to ear, you know what,it's going to hurt. But again,
(17:39):
we tell them that and I say tothem, that means that when you
wake up, and it does hurt, youremember that Mr. J said it will
get better. And again, it'sabout them saying, Oh, yeah, he
told me it would hurt. But healso told me that it will be
better by tomorrow. And oncethey know that you are telling
them a big true, they will takecomfort and benefit in knowing
(18:02):
that it will get better. Whereasif you say to them is not going
to hurt, and then it hurts. Whyshould they trust you, that you
tell them is going to get betterby the next day or by the next
week? Or if they have aweakness, you say look, it may
well be weaken your arm, whatwe'll do lots of physio, it may
take weeks, but it is probablygoing to get better. And if it
doesn't, we'll work around it,then they're part of the
(18:24):
conversation there. They knowwhat's going on. And that always
ends up with a better outcome.
David (18:31):
There's a code I think that you have, you know, code
review, if you will, withinsurgery, which is watch one, do
one, teach one right, which Ithink we've you know, heard a
few times. But is, first of all,it was interesting to understand
that and just you know the kindof nuance of that of how that
works. But I'm hoping that thathas also happened when it comes
to that kind of bedside mannerand the compassion elements of
(18:53):
it and teaching your kind ofstudents as it were, or the
medical students coming throughhow to have that interaction as
well, because I think, I don'tknow, maybe it is maybe it's
not, but it feels like it's arelatively new way of, you know,
being able to think about howhow one discusses what's going
on with children and thatempowerment element of it. And
the reason I say or maybe guessthat is because we're starting
(19:14):
to see technologies to try andhelp with that element to try
and empower the child to try andbring them into the decision
making process more than theyare already.
Jay (19:24):
Definitely kids adopt technology so fast, that we are
struggling to keep up to be ableto make the apps or make the
devices to keep up with theirability to use them. So the
answer to your first question isyes, absolutely. We don't do see
one, do one, teach one any morethank goodness. You see a lot,
(19:47):
you do a lot and then you startto do them by yourself. So it
there's much more oversight ofwhat happens in the operating
theatre from the more seniormembers of the of the team than
they used to be. But we do Wardrounds with our trainees. And
they're involved in theconversations, they hear how we
do it. And you'll hear differentways from different people. And
(20:08):
it's not the one person's isright. But what you get to do is
by doing as many Ward rounds,and as many of these in depth
difficult conversations, you getto start to pick and choose bits
from each of your bosses and go,I like the way they did that. I
like the way they did that. Ididn't like that. So we'll get
rid of that one. But you canstill take positives from
everyone that you learn from,and then you build up your own
(20:30):
style. But I think as long asthe style respects the patient,
and gives them a voice in it,it's fine, how you want to do
it, you know, some of mycolleagues are much more, nicely
patriarchal, so much more about,don't worry, I'll sort it, it'll
be fine. If you genuinely can dothat, with honesty in your face,
people will go with that systemas well. That's not usually my
(20:54):
method, I'm a bit more of a ofan equal conversationalist but
it's not the ones better be onthe others worse, doesn't
matter. As long as the patientand the parents feel that
connection, feel that trust,feel that unspoken, signing on a
contract that you do, when youlook the parents and the child
in the eye and you tell themwhat you're going to do, you're
(21:16):
making a contract there, youknow, you are signing on the
dotted line with that familythat you will look after that
child as best as you possiblycan, however you do it, you've
got to be able to make sure thatyou make that contract. And
you're right, using technologyto help kids involved in that.
So there's watching things aboutoperations, watching, you know,
(21:37):
animated versions of treatments.
Understanding and reading,enables you to have a thought
about what questions you want toask the health professional when
you finally meet them, or whenyou meet them for the second
time if need be, there'sdownsides. Because there can be
unregulated education on theinternet, some of which can be
very wrong. But we usually tryand send them to various
(21:58):
websites that we know or aretrustable. But technology is
here and can only help toeducate and education lowers
anxiety, education, lowerstress, it's got to be good for
the kids.
Hannah (22:13):
I know that one of the areas that David was wanting to
cover this afternoon was aroundthe role of technology, not just
for aid in communication withthe children, but practically,
perhaps in the operating theatreas well, just in an angle that
you've been thinking about wasto what extent can technology
reduce risk of some of thesecomplex procedures, but the sort
(22:36):
of flip side of that that I wasalso curious about was in a when
you're talking about innovationand new technology, then there
is also some inherent riskthere. And you know, when you're
in the most vulnerable ofvulnerable situation dealing
with children and neurologicalissues. So in my mind, that's a
(22:57):
very delicate space to be Imean, working and not operating.
And then how have you been ableto pull technology in ways that
you're comfortable with whereit's the the potential that it
lends to you goes far beyond anyconcerns that you might have, by
the fact, by virtue of the factthat it is a new way of doing
(23:19):
something?
Jay (23:20):
Yeah, the additional levels of technology that are being
promoted to, for example, us asneurosurgeons is exponentially
increasing, and not always forthe better. So I have driven my
car into what was quite clearlya field, because the satnav told
me to turn right. And my wifesaid, I wouldn't turn right if I
(23:42):
was here that looks like afield. But I said her but
satnav, I mean, it was a Volvo.
So I don't know how it told methat lie, but it did. And I
think we, we all have a naturalability to switch off our own
thought processes and trusttechnology. And what we have to
do when we're doing operations,is be very sure that you use
(24:06):
technology along with yourhighly trained knowledge that
you have, and constantly bechecking that what it's telling
you is correct, and is the bestthing for the patient. If we
think about the technology thatwe use now, for example,
guidance in theatre, basicallya satnav for the brain when
(24:27):
we're doing an operation. Nowthat indeed can help us to
remove all of the brain tumouror to get a tube into the
correct part of the brain.
However, the decision makingabout how much of that tumour
you want to take out, cannotrest just on, this as the
abnormal area and therefore wewant to take it all out, it's
(24:48):
having a knowledge about thepathology? What is sort of
tumour is it? Do we need to takeit all out? Or is it something
we can leave a bit in and treatwith another way, but also about
that relationship you have withthe patient. What a concert
level pianist may choose isdifferent from what somebody who
works as a shelf stacker inSainsbury's may choose from the
(25:12):
point of view of risk benefitfor it. Not so much as a
children's neurosurgeon. Butwhen I was a trainee, I remember
that very example, because wehad a concert level pianist who
chose and said, Do not go forthis bit of tumour, if you think
it's likely to cause me to beunable to play the piano,
(25:34):
because if I can't play thepiano, I might as well not be
here. And I am willing to take ashorter lifespan with my piano
than a longer lifespan withoutwhether we agree or not. If you
don't know the patient, youhaven't taken time to talk to
them. It's just another tumour,let's get the tumour out, let's
take it all out. But that again,removes the autonomy from the
(25:58):
patient to make that decisionabout what they're prepared to
do. And, you know, we've takenon and we said, we will fix you,
but they didn't ask to be fixedin that way. So you need to have
that conversation to know whatthe personalised. It's a big
thing, isn't it personalisedtreatment. And that goes right,
the way down to it comes down tothe fact you need to know your
(26:18):
patient, to be able to have thatconversation and make that call
with them.
Hannah (26:23):
Only in recent years, I've really understood the value
or power of judgement andinstinct. Because before this
moment of realisation for me,which was actually related to
Oscar, I had just seen that as Iwould have said, that a
reference book or a computer orsomebody with a different job
(26:43):
title, to me that was rated inthe field, that that fact coming
out of those sources would be ofgreater value than my judgments
coming or my perspective comingfrom instincts or judgments. And
I know now that that's not thecase, and that these, the
instincts and judgement are, ina sense, many, many data points
formed over 10 or 20 years in mylife that have validity. Of
(27:09):
course, that's furtheraccentuated when yours is very
specific training that's come tobear, but it's a useful life
lesson that you can apply beyondtheatre.
Jay (27:20):
It is, but it's also, it's the reason why you can't, for
some conditions, you can, butfor the majority, especially
surgical, you can't use acomputer yet to do that. You can
use a computer, you can use AIto show you the abnormality, but
you can't yet use AI to decidehow you're going to treat it
(27:41):
best for that particular person.
You can't use it to be able tohave a conversation with a
person about what risk benefitratio they are prepared to take
for any particular treatment.
And until you do that, until AIis so far advanced that they can
have that conversation. And itcan make analysis far beyond
what we rely on which is havinga relationship that they can
(28:03):
trust us and tell us the truth.
But also being able to gaugeWell actually, we've not really
been able to look them in theeye. While you've been saying
this. Are you sure this isactually how you feel? Or are
you just going along with it?
And getting that sense of arethey telling you what they
actually want to do or not. Andof course AI is coming in. It's
coming in a rather nefarious waythat I've been reading about,
(28:24):
you know, looking at pupils, andsweatiness when they're
interrogating prisoners, buteventually that will come down
to a hospital setting wherewe're talking to patients and
wondering if they're telling usthe truth or on using that
information. But until thatcomes, which is probably a long
way away, it is about thepatient trusting us enough to
tell us what they honestly thinkrather than what they think we
(28:45):
should be told. And I can't seethe time in my life span that a
computer will be able to dothat.
David (28:52):
I'm gonna I'm gonna try and do a kind of, you know, link
here between, you know, sowe're, we've both been I've
worked in AI, currently, Hannah,Hannah has worked in AI and
looks at it. And I think wecertainly recognise that in
order for AI to really be thebest it can be. And one thing
that AI will never be able to doand what we've really kind of
(29:12):
the substance. And I guess theunderlying theme of this
conversation is around empathy,and understanding, you know, the
patient in front of you, thechild in front of you, the
family in front of you. And wewere discussing just before we
kind of pressed record, thatelement of how important it is
to be able to really kind oftrying to step back and
understand more about peoplearound you and what they're
(29:36):
going through and having thatkind of empathy and
understanding around andcompassion I guess just you
know, generally, and I knowthat's a topic pretty close to
your heart.
Jay (29:46):
It is look AI is going to get here. But I think back to
real basic AI. It's not veryhigh. But my kids used to have
this, it was a seahorse with arubber tummy, if they woke up at
night, they've pressed thetummy. And it would do a little
glowing light and play a littlesong. So there is a an
(30:08):
interaction between a human andthe machine that the human told
the machine, I am feeling sad,or distressed, or I need
soothing. Right now, okay,granted, it was a one year old
human, but they were still ableto tell the machine that by
pressing its tummy, and themachine was able to respond by
doing the correct soothingactions to help that person.
(30:32):
That's a very basic, but thatis, it is artificial, and to
some level is intelligent. Now,you're going to have to go
exponentially higher to be ableto do what we would like it to
do for our patients. But it willget there, it will get to the
point where it will be able tounderstand enough to be able to
(30:53):
come up with a conversation thatwill probably serve that person
to some level. It's all beingmade by a human and learned from
a human, it hasn't learned it byitself. But it will come. And
that's not a bad thing. It's nodifferent from putting on
classical music, when you'refeeling anxious or me putting on
(31:14):
techno, if I wanted toconcentrate that's AI, some
level, it will come. But itneeds a human to put the
information into thatintelligence. And it's what
information it puts in, it's theprogrammer, that will become
absolutely vital. If youprogramme the computer to be
(31:34):
harsh and cold. And to tellpeople to just get on with it,
it will be a fascist AI. If youprogramme it to be much more
gentle, and have much longertime to be able to hear answers
and not log off and not startthinking you know, I can't hear
you say it again, well, thenyou're gonna have a more caring
(31:55):
machine. So it all comes down towhat the person is thats doing
it. It's the same as whetherit's a human who's a horrible,
uncaring human or a caringhuman. They're just putting that
into a machine. And then thatinterface will reflect the
programme.
Hannah (32:11):
And taking the technology aside again. And one
of the conversations we werehaving before we press go on
this podcast was around how wedeserved more kindness in the
world during the peak of COVID.
And how people were givingothers, where being more
generous as others are goingaround their day to day work.
(32:33):
But that was something that youhad a point of view on your in
your professional role around,you know, not knowing not
knowing what's going on insomebody else's life, could you
talk for a moment around, youknow, when you're thinking about
empathy and how you communicatewith your patient, it's not only
the child that you're concernedwith that, but there would be
(32:55):
others, other stakeholders thatyou're looking out for?
Jay (33:00):
Yeah, you are not just treating the child, you are
always treating the family, aswell as the child and taking
them on the journey. The childis the Centre for the parents as
well as for you. But the parentsare the next ring out. And if
you don't take them with you,the child will pick up the child
realises the parents don't trustyou, then the child's not gonna
(33:23):
trust you. And so we have aselfish responsibility to do it.
But also we have a caringresponsibility to make sure that
parents understand what theirchild is going to go through and
be ready for it, it reflects asociety issue of being able to
put yourself in someone else'sshoes, as we were saying people
(33:43):
did do for a while, and are nowstopping doing is my experience.
They are now looking intothemselves into what do I get
out of it? What's best for me,not what's overall best or
what's fair or what's right.
It's about what is best for me.
I try not to be political, butto me. It's reflecting all parts
(34:06):
of society, from our government,right the way down. We're being
encouraged to think aboutourselves much more than we are
about society. And we will bemuch worse off with that
decision that the countryappears to have already made. To
go back to that. Literally juststopping and waiting
permanently. I try and thinkabout this all the time. I think
(34:30):
if you see somebody who'sdriving very slowly, who's
really at the roundabout and isnot able to get going and a gap
that you think well. Of courseyou can do that. Well, perhaps
they've left they're really sickspouse or child at home or going
(34:50):
to work perhaps they're going tohospital for chemotherapy.
Perhaps they have a good friendwho's overseas who's desperately
sick and they can't get to seethem because they can't travel,
perhaps lots of things. Perhapsthey're thinking how the hell am
I going to fill my car up withpetrol? Because I've got no
money. And how am I going tofeed my kids tonight, it's being
able to think about how noteverybody in that queue waiting
(35:14):
to do with that roundabout, isfinding it as easy or as
straightforward as you are thatday. I was I was once in a
queue. And there was a turn outto be a colleague of mine, a
surgeon who was in a largePorsche, four by four behind me.
And I was pretty tired. And I'dhad a, you know, some
(35:35):
difficulties with some patients.
And I was quite tired. I wasjust waiting to leave and I
wanted to pick it up. I didn'twant to try to freak out. And he
started horning. And I didn'trealise who he was. And I wigged
out, I should never do this,advising anybody to this, but I
got out of the car. And I wentaround and I said, What is up?
What is the matter? He said, Oh,you could have gone there. I
(35:56):
said, so what? what was going tohappen? I waited. But if that
had been my 81 year old dad, atthat cue, he would have jumped
with his car, panicking becausesomeone's falling behind him.
And he may have had an accident,because his I mean, he does not
go fast at the best of times,and he could have easily had an
accident. And what would thathave gained, you would have
(36:18):
gained you the phrase I used Iwork for now, but it would have
gained you not very much. Sojust take a breath, I shouldn't
go back to my car and I went,but it just encapsulates how we
can be super caring. I mean, getin a car, or we can go to the
pub, or we can do lots of otherthings and disconnect our caring
side and become a real chumpagain, I can be a real chump as
(36:43):
well, let's not beat around thebush there but what I'm trying
to try and bring a more caringpart to everything I do. And I
think if we all do that a weebit we will be better overall.
David (36:57):
There's one thing I want to talk to you about before I
kind of ask you what, what tendsto be our last question, which
is around and it's coming backto what you talked about in
terms of just, I think, bringingeveryone in and thinking about
everyone, but when you bringyour team together within the
operating theatre, and thecollaboration and what have you.
So first of all, you've touchedon it, but you have we already
talked about but you'd like tohave loud blaring music and just
(37:20):
from a concentration point ofview. But the more important
aspects for me is that culturethat you bring to allow
everybody, you know, the kind ofmeritocracy of anybody can speak
up if they see that something'sgoing wrong. And to me, that's a
really important lesson that weshould, you know, at least
hopefully get out to thelisteners.
Jay (37:37):
Yes, I mean, be clear that's not just me, that's
instilled into I think everybodynowadays, in hospitals is the
ability to speak up if you thinksomething is not right. But
also, I guess, you've got to gobeyond that and actually have a
relationship with other people.
So knowing the names of thenurses, knowing the names of the
porters, if you know eachother's names, you're much more
(37:59):
likely to say something than ifthey go or there's that person
who I can't really speak tobecause they're the surgeon, and
I'm, quote, unquote, just theporter, well actually
everybody's there looking afterthe patient, and everyone wants
the same thing, which is thepatient to do well. And while I
probably I think probably mostpeople who know me will say that
(38:21):
I run a democratic system, it isslightly autocratic when we're
operating, I think that there'sthere's a time and a place for
it. And it's people knowingthere's a difference between
being a leader and being anautocratic leader. And I hope
that I can do one without doingthe other. So you have to lead,
(38:41):
you're in charge, you're thesurgeon, the consultant surgeon.
And along with youranaesthetist, you are very much
running the show in thatoperating theatre. Officially
it's the scrub nurse who's incharge of the operating theatre.
So officially, the scrub nursecan check us out if they want
to. As a junior, that certainlyhappened. But they weren't. If
you're the person doing theoperation, you're a team. And
(39:04):
the less experienced or the morejunior staff will look to you in
a crisis. So the first thing isyou do have to be a leader in
that you need to be able to leadwhen everything hits the fan, as
well as when everything's goinggreat. And at that point, you've
got to be able to say, right,this is what we're doing. This
is how we're doing it, you dothis, you do this, you did this.
(39:24):
But to avoid getting into thatsituation, you want everybody to
be able to feel to say,Actually, I don't think this is
right. I'm not sure about that.
Are you sure about this? Andagain, it's being able to say to
him, if you see me doingsomething wrong and I verbalise
this to my team a lot. If yousee me doing something wrong,
(39:45):
don't wait and go. Yeah, Ithought that was a bit odd. You
know, a baby, you knew whatyou're doing. No, tell me and if
I'm alright with it. I'll saythat actually, yeah. Now I know
it's a bit unusual, but forthese reasons I wanted to do
that bloody hell your rightthanks very much. Let's look at
the other side of the patient'shead. And maybe we'll it will be
an easier operation. right downto the basics of checking the
(40:07):
side is everybody happy, this isthe left side of the head, look
at the scan, that's the leftside of the head, real basic
stuff, and everybody can get itwrong, which means everyone can
help to avoid a mistake.
David (40:21):
Thank you. I was I, as I said to you, I think before we
came on, I'm a bit of a kind ofnerd when it comes to the
leadership side of things. So Idid want to get that across. But
it's been so fascinating talkingto you. And we could absolutely
go on forever. But I'm sure thatyou've got very important things
to be doing, so our kind offinal question that we asked to
everyone is, if you could, ifyou could change anything within
(40:43):
child health, withinpaediatrics, what would it be?
If you had that kind of magicwand?
Jay (40:49):
It probably wouldn't be within a hospital framework, but
it's recognising how theenvironment that children are
brought up in at home is themost important thing to how
children's health will be longterm. So food, nutrition, love,
a roof, things that not all kidshave, even in Britain. That's
(41:13):
the most important thing that wecan do for our kids. What I do,
the stuff that I do is highfaluting fancy, expensive, but
in brutal terms, small numbersof children. And while what we
do is really important, becauseit's what sets us up as an
advanced society caring aboutthe weakest, we haven't even
(41:35):
done a very good job of justcaring about kids full stop, you
know, hungry children, andunloved children uneducated
children. This is happening inBritain in 2021, which is a
shocker. Frankly.
David (41:51):
I don't think we could obviously disagree with that in
the in the slightest. And one ofthe things that, you know, we're
trying to do with this with thispodcast is to highlight some of
those areas and try and sharestories of people that are
trying to do things differently.
So thank you so much for yourthank you for everything that
you do, first of all, and forjoining us today. Thank you for
(42:11):
sharing your thoughts and yourexperience. And, you know, we're
really grateful for your time.
Jay (42:18):
My pleasure. Thank you very much for having me.
David (42:24):
Thank you so much to Dr.
J for joining us this week. Asyou would have heard, it was a
pretty emotional conversationboth for him and us, given the
work that he does, but also thereasons behind the job that he
has, why he is doing it and whythat's so important. We really
do feel humbled to speak toamazing people like Jay and we
really hope that you are gettingas much out of these
(42:46):
conversations as we are nextweek. We're speaking to Richard
Hebdon who is the director ofhealthcare and Life Sciences for
the British government'sinnovate UK department. I'm
delighted to say that we will bediscussing with him how he is
helping to support Child Healthand bring more innovation and
finances into Child Healthinnovation. We really hope that
(43:08):
you can join us then please dosubscribe to the podcast. And if
you're enjoying it, please doleave us a review as well. We
hope you'll join us again nextweek.
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