(soothing music)
- Good morning, everyone.
It's lovely to have you
with us this morning.
For those that haven't joined us before,
I'm Nick Russell and
we're being joined today
from the UK by Sue Archibald,
a consultant in hearing
character cochlear implantation.
Now, just before we get on to speaking
with Sue this morning, a little
bit of housekeeping for you.
Along the bottom of your screen
on the right hand side is a
little closed caption icon.
This is for, if you need
to follow with captions,
I've just got a message just making sure
I wasn't doing anything wrong.
If you click on the closed captions thing
you'll have subtitle option
or transcript option.
Subtitles come along the
bottom of your screen,
transcript comes up on
a panel on the side.
Towards the end of the webinar today
we will be able to ask Sue some
questions, time permitting.
Sue if you are happy to take questions.
We'll either use the Q&A
function or the chat function.
Last week Q&A decided it
wasn't playing nice to me,
I had a few issues.
So we had to divert to chat,
we'll let you know as as we go along.
So anyhow, straight into it Sue because
we've only got an hour this morning.
So you've been involved, Sue,
in public health advocacy
for hearing care and cochlear implants
for over 30 years now.
And in that time, we've seen
the first child implanted,
the first adult implanted and at the time
that was innovative and groundbreaking,
and now CI has become the
standard of care for children
who are with severe and
profound hearing loss,
who are identified through
the newborn screening program.
But however we haven't seem to have made
the same advancements in
the treatment of adults
with server and profound hearing loss
who does need access to CI as treatment.
Even though the research has
demonstrated huge quality
of life and health gains for them.
So today Sue, I think we
will start by reflecting
a little bit on the history
of public health advocacy
initiatives, (mumbles)
that have brought us to this point.
What has worked, what hasn't worked?
What are the gains we've made?
The key learnings, and
how those can all guide us
to more inclusive and
equitable CI programs
within public health amidst
a pandemic, of course.
So Sue first off, can you
give us a brief overview
of the history of the first CI
and the value of the
program you're involved in?
- Thank you, and good evening, everybody.
Well, it's good evening
here, I'm in the UK.
It's 10:30 at night.
But, Nick threatened me with midnight.
So I'm very pleased, this is 10:30 PM.
It's a great pleasure to be here virtually
and it might be some time before actually,
we can all meet up again
and get on an airplane,
but this is fine for now.
As you said, Nick,
30 years and to reflect back,
and what has actually happened
in the cochlear implant field
I would never have dreamt 30 years ago.
I was by a professional teacher
of the deaf at that time,
working with profoundly deaf children.
I had been a mainstream teacher
and working with profoundly deaf children
just made me realize that the huge impact
of profound deafness.
The huge impact on the
development of language
on communication and everything
else that that involves.
So in the 80s,
we were starting to hear of
things happening in Australia,
for example, cochlear implants
- (mumbles)
- Yes.
And about somebody called
Graeme Clark working there,
where we were hearing that
adults were being implanted
and then children.
And of course, the parents
that I was working with
were starting to hear about it too
and wanting the best for their children.
So along came a little boy called Michael
but who had had meningitis,
and I was his teacher of the deaf.
His mother was absolutely determined
that he would have a
cochlear implant somewhere,
and sometimes it happens in
life things come together.
Sometimes they don't and sometimes they do
but we happen to have the MRCs
Institute Hearing Research,
we had a big audiology department.
Jerry O'Donoghue came from the States
who had been involved in
cochlear implants there
and we had a very determined Mom.
Unfortunately, of course, our NHS said,
"Well, we're not providing
cochlear implants.
"There's no evidence to show they work."
Have you heard that before?
- Oh, yes (chuckles).
- So that was my first taste
really, of public policy work
because we decided that okay,
if you're not prepared to do that,
then we will get the evidence.
So we set up the charity
to fund the first 10 cochlear
implants to gain the evidence
and that, as I say,
that was my first taste
of public policy work.
And we set up the first
pediatric program in the UK
which became one of the
biggest in the world.
And that little boy is now in
his 30's with his own family,
and has quite a powerful
job and fully independent.
But those are the things
I would never, ever
have expected 30 years ago to
have happened in my lifetime.
So it's been amazing.
- We've come such a long way Sue.
I think you wanted to
share a little slide here.
Do you want me to share your slider thing
you're talking about Michael?
- Yes, please.
- So I think it was this one
you were talking about Sue?
- Yes, when I was a
teacher of the deaf there,
and like many of us at
the moment I've been doing
some clearing out,
and I happen to find some
diaries back into 1987.
And written in the diary,
"An awful lot of people
"are giving an awful lot of time to this,
"I wonder what would become of it."
I never imagined what we'd be seeing today
with cochlear implants.
However as you intimated,
Nick, when we started,
we've come a long way, but
actually not far enough,
and particularly for adults.
- Yeah, and talking about adults Sue.
What first lead into adults
being treated with CI?
Because you've talked about
the impact of deafness
and it is quite devastating for
people who have been hearing
to lose their hearing.
In adulthood, I think,
people just really don't
understand how devastating that is.
It's isolating and it's lonely,
and it's frustrating and
it takes away so much of
who they are as a person.
So with all that in mind,
what lead to action to get
adults treated with CI?
- You're right, you're
so right about the impact
of hearing loss on adults
and it's really under
recognized by society,
and we'll come to that again.
There was a lot of work going on there
at that time about adults.
There was work going on in
Sydney that I referred to,
but I think we should also recognize
the part in history that's played.
There was Bill House in the States,
there was the Antwerp Group,
there was the Hawakamize in Innsbruck,
and of course, Graeme Clark in Sydney.
But I think it's timely also to recognize
the adults and the parents
who took part themselves.
Who took risks.
- Yeah.
- Which it's really hard to think about
the risks that they were taking, Nick.
- Yes, in an innovative
groundbreaking treatment
which is new,
you don't have some of that
body of evidence behind it.
It is a huge risk, isn't it, to undertake?
- It is a huge risk and you're quite right
to refer to that body of evidence.
What it taught me is that if you're going
to make changes in public health
and public health funding,
and public health provision,
then you do need some evidence,
and you need to find that evidence.
But you also need
the people who are
prepared to take the risk
like the mother of Michael Vatt,
like the adults that you
had here in New Zealand,
for example, and the adults
that we had in the UK,
moving ahead and taking the opportunity
to have a cochlear implant.
Without the steps that those
people were prepared to take
we wouldn't be where we are today
or have the evidence to move forward with.
But as you refer to that huge
impact of deafness on adults,
the social isolation, the mental effects,
the physical effects,
the links with dementia
that are so apparent now.
And in fact, so many people don't realize
that hearing loss in
adults, it is in fact,
the number one cause of years
lived with disability over 70.
- Wow.
- If you went out
on the street, people wouldn't
really wouldn't know that.
- Because it's known as an
invisible disability, isn't it?
- Yes, indeed.
- Yeah.
- And I'm sure many people listening will
be able to recount stories of
people denying their deafness,
of the frustrations with it.
It is that unseen disability
and the impact is unrecognized,
even though that evidence is growing.
- Yeah, and all the (mumbles)
and those early days I
think like Bill Baiber
and Ron Goodyear were the first surgeons,
were part of (mumbles) New Zealand too.
An implant at like Florence
Woodward was one of the first
in New Zealand to be implanted.
- Indeed.
- Over 30 years ago.
So in those early days Sue,
when you're first
starting out, advocating,
what did you find was
effective in advocating
for treatment in adults
and especially as you know
in groundbreaking treatment?
You must have faced huge
challenges more so than today
because it was so innovative at the time.
- The challenges were huge,
and I think the controversies
are really difficult
to understand now.
So not only did you not have any evidence,
not only did you not always know
what you were doing (chuckles).
If you're entirely honest about it.
Not only did you not have any funding
but you're facing huge controversies
from all sorts of groups
because this was seen
as a very expensive intervention.
20,000 pounds plus the rest
in our case was a huge step up
and people fought hugely against
the cochlear implant programs.
We actually had on our
walls at the hospital
in the Cochlear Implant
Center in Nottingham dobbed,
"Death to those who
kill our deaf children."
- Oh my goodness.
- So they were really
serious controversies going on.
Even in the year 2000,
our Federation of Deaf People said that,
cochlear implants should
be decommissioned.
Should not be available, even for adults.
So when we think in 2020
and get frustrated by where we are,
we've actually come quite a long way,
not far enough, as you'd say.
- With that in mind you, it's like
that type of animosity
at the time and barriers,
how do you actually
cope with that as a team
who were dedicated to getting
the intervention out there?
How did you manage to cope
with (mumbles) professionally
but also, on a personal level?
It must have been
really, really difficult.
- It was extremely difficult
and really challenging.
And that was one of the reasons why
we set up the British
Cochlear Implant Group.
And Ellen Giles, who now many people know.
Well, she was running the Manchester team
while I was running the Nottingham team
at the same time in those early stages
and she was one of the keys
to setting up the British
Cochlear Implant Group.
For both professionals and users
to get together for mutual support
because it was very difficult
and if you can imagine you're
a parent making this decision
for your child,
and people are really giving
you a very hard time about it.
That was very uncertain,
very challenging times.
However,
there were steps on the way.
Cochlear implants make a huge difference
both to adults and children
and you did have those
moments where you thought,
yeah, we're sticking at it.
A colleague came along the
corridor in the hospital
and we just implanted a
two year old and she said,
"I have never seen
"or heard of a profoundly
deaf child babble."
- Oh, wow.
- She sounded like
a hearing child.
We'd never ever heard that before
and people take that for granted now.
- I was going to say
like, that's the thing.
It is life changing technology, isn't it?
That was what was happening at the time.
- It was and it's still happening,
and I think the user groups
that formed and came together
were extremely important.
And the sort of groups that
you have in New Zealand
and that we have around the world
were extremely important
for mutual support.
And, of course, do you
remember that in those days,
there wasn't such a thing as a blog?
There wasn't the internet
that you could go on
and have a chat to somebody else.
How was it for you?
And to share, which has
become very important,
the sorts of services that you provide.
- We still struggle getting
awareness out there,
we're going to come to
that as we discuss on but
back then it must have
been really difficult.
We're struggling with awareness
with all these tools at our disposal now.
How did you bridge some of
those challenges back then?
- About awareness?
- Yeah.
- Well in a way,
the fact that it was so innovative
and so new played into our hands,
because the press were
extremely interested.
So, but again, that can be very hard
if you think about it for families.
You've just made this huge decision
to have your child implanted,
you haven't got somebody
else's route to follow them.
You didn't go on the web
and see all the stuff
that we have today, all
the stories that are out
that are so important to share.
So to go in front of the TV
cameras was extremely hard.
Hard for adults but also hard for children
and for their parents.
The other thing about children,
which is probably different
to working with adults, is
that it takes a long time
to develop language.
So you're waiting two or
three years before you see
the benefits of the implant
but the press were extremely
interested at that time.
We had a lot of press coverage,
we had a big thing on
Tomorrow's World and so on.
So that actually helped
and it helped to keep it.
Something that did happen in the UK
that was extremely helpful
then, and I think, Nick,
is about what you're about what
you're about, public policy.
So in 1990, our Department
of Health decided after
all the sort of work that you do,
lobbying in Member of
Parliament, et cetera.
That we need a program in the UK
for cochlear implantation.
Our Department of Health decided
to fund a three year trial.
That was a huge step forward and
we are fortunate enough to have
the MRCs Institute of Hearing Research.
And what that taught us was
another step on the road
for the public policy work,
that you need to data.
- Yeah.
- You needed evidence
and you needed the personal stories.
- The trifecta in other words.
- Yes.
Is that what you see it, the trifecta?
- We do know, as you said,
how important empirical robust evidence is
to get new treatments in health
because that's really what
governments want to see.
Especially when we're asking
for public tax funded programs.
- Indeed.
- At the minute,
after 30 years of these
programs being fairly successful
and the life changing
benefits we're getting,
and the cost benefits of implanting.
That body of research is huge
but globally there is huge
differences in funding models
that we've got, like some
kind which are funding well,
some not so well.
There is still an overall
issue with awareness.
So in your experience
Sue, because you've worked
with programs globally, so you know
what programs are funded really
well, some of those are not.
Us for example,
and then about the awareness and the gaps
where funding might be good,
the awareness may not be
so good, and then uptake.
So can you give us some
insights into those
that are doing funding well
and whether they're still falling down?
And what maybe other kinds
whose funding is lacking
and what perhaps we can do to get
that funding up a little
bit, a bit better?
- You're quite right, is it?
We have the evidence, as I say,
our Department of Health did that trial,
and that really taught us a lot about
what you needed to provide
to be able to go on and
to get continued funding,
and that, thankfully was successful.
What it did also teach us
which was very important
was to produce the evidence in a way
that people could understand,
the nonspecialist could understand.
Because the funders, in
a way that dare I say it,
even a politician can understand.
So if you look around the
world people are faced
with the same issues about hearing loss
and it's many of the same
issues about provision
of hearing aids and the
provision of cochlear implants.
The great disparity, and even as you say,
where you have funding in place
and where you have guidelines in place,
you may not actually have
the access available that should be there.
Well, what we did find, as I say,
was that that evidence needs to be
in a way that people can
actually understand it.
I always remember being at a meeting when
a researcher was talking lovingly about
a really intense project
that she was doing, research project
and I looked at the funder and said,
"Well, would this research
change your funding decisions?"
Well his answer was, "I haven't got a clue
"what she's talking about."
And people talk about that
science-policy divide.
That when you're actually trying
to talk to the policymakers
and so on, that they glaze
over and don't understand.
So you quite rightly
talked about the disparity.
We can have countries which
are geographically adjacent
but which have very different
access to hearing aids
and to cochlear implants.
There's an excellent
study by Bridget Shield,
about hearing aids and
hearing aid provision
just showing that disparity.
There seems to be so often,
a stigma about hearing aids
and hearing loss, and cochlear implants,
that it's very difficult to get across.
In New Zealand,
you've done so much about
awareness, haven't you?
- A lot of that's thanks to
the cochlear implant community
coming together really well
and sharing the stories,
and health professionals really
advocating really strongly.
I think that's what New Zealand
does well as a community.
They've come together
so well and are voicing
their needs really well
but still, we're still
battling that funding issue.
We all speaking really well
and for many of our clients,
they can become quite disheartened because
to have a voice when
you've got a hearing loss,
it's challenging anyhow.
- Absolutely.
- Because when you've got a hearing loss,
you want to retreat really from society
and you're sort of isolate yourself.
So you don't have the confidence
to share your experience.
For everything really, for
your stories to fall on,
pardon the pun, deaf ears
for one of our other words.
It really is hard to keep going at times.
That's hard for us down
here, I have to say.
- Yes, and I think that is
where today's technology
and the internet really can show the way
because people can join up globally.
There's advocacy groups around the world,
we've got the Cochlear Implant
Alliance in the States,
we've got different
groups around the world.
We've got the World Health
Organization doing amazing work
that they weren't doing 10
years ago about hearing loss.
So although it is frustrating,
we do seem to be making
some steps on the way.
The World Health Organization,
it's the World Health Assembly this week,
which of course has been held virtually
but guess what the World Health Assembly
is talking about this week.
- Hearing loss.
- It won't be hearing loss (chuckles).
They'll be taken up by the pandemic.
We were supposed to be launching
the World Hearing Report this
week, that won't be happening.
The pandemic is taking up all that news.
So there is a considerable
amount of activity going on
which needs to be brought
together in ways that we see
in other disabilities such as vision.
Vision actually seems
to be much more cohesive
and much more collaborative
as groups to move forward.
Hearing loss hasn't done
such an effective job as that
globally, even with the internet
and everything to support it on its way.
- And all that as you said Sue,
we have so come a long way.
So it's not to lose heart
when you look at where you start
from to where we are today.
A couple of years ago,
there was a wonderful campaign in the UK.
They drove a highly successful
campaign in lowering
the access criteria for cochlear implants
for people with severe
to profound hearing loss.
So can you just give us an
overview of that strategy
and how that actually end up
being as successful as it was?
- Looking back, it's really interesting.
So, in spite of the moves that were made,
in spite of that exciting technology,
in spite of the television
programs about it.
When David Cameron's
government came in to power
and produce their first white paper,
it didn't even include hearing loss.
- Oh.
- So you had behavioral issues,
emotional issues and so on,
but hearing loss didn't even figure.
- Wow.
- Why?
It's the issue that you were
talking about before Nick,
about the lack of awareness
of the impact of hearing
loss and deafness.
So we decided we needed
to do something about it
and one of the problems was
that there are so many groups
involved in the deafness
and hearing loss business.
Do you have the same
issues in New Zealand?
- Yeah,
there is lots of different
little groups, absolutely.
The thing that I like about New Zealand,
what they do tend to do really well,
is it tend to come together quite well.
I have to say, in most instances
because we are small,
we are quite spread out
but they tend to work
quite nicely together,
because it's a small community,
really in New Zealand.
5 million, it's a village (chuckles).
- Yes, yes.
And we've got 65 million.
We've got 11 million
people with hearing loss.
- Wow.
- So it's more than twice your population.
So we had a lot of groups
that were involved.
But of course,
when you've got a lot of
different people going
to government with different messages,
that's an excuse for
politics to do nothing.
- Absolutely.
- Which is what they like.
So we decided we needed
to bring them together
with one voice and one message.
So we formed the Deafness
and Hearing Alliance,
chaired by Brian Lamb.
It took quite a while, shall I say?
- Yeah.
- But we decided
to be effective public
policy work in the UK,
we needed to do that.
I can also remember the day
when he shouted everybody
in the room and said,
"You're not going out of
here until you've agreed
"the three things we're going
"to campaign on about hearing loss."
- A man after my own
heart, I quite like that.
- Yeah, exactly.
So we campaigned for the
action plan on hearing loss
and it had 50 iterations,
but it was published with
a plan and an action plan
to follow it, and a commitment
by the NHS to fund it,
eventually after 50 iterations.
So that's the sort of thing
that you do need to do.
But out of that arose an action
group for adult implantation
because in the UK, we had some
of the strictest guidelines
for access to cochlear implants.
We have the National Institute
for Clinical Excellence, NICE
or not so nice sometimes (chuckles).
Which happens to monitor
everything that we do
and access to technologies and treatments,
and our guidelines for NICE
we're extremely strict.
Were some of the strictest in
Europe, which wasn't helping.
Do you have accepted
criteria in New Zealand
than you all work to for adults?
- There is accepted criteria
in the contracts, yes,
but we don't have
guidelines like NICE as such
that the guide us.
- Yes.
- I think our access criteria
is exceptionally strict as well,
because you've got the clinical criteria,
and then you've got the funder criteria.
So you've got two.
- Yeah.
- And it's so while you
might meet clinical need,
if you would get a publicly
funded one would be.
We've got really strict
funding over here and
which we've been
advocating for a long time
to get better funding made available.
I think we were looking to try
and get 120 implants a year up from 40.
And that's been an ongoing
advocacy initiative
from the trust on the board
working quite closely together
to get that but we haven't
quite got there yet,
as we're still in discussions.
- Good, because as I understand
it, that baseline at 40
has stayed like that
for some 10 years or so?
Well ours was extremely strict.
We set up the action group, we
involved professional bodies,
we involve the user groups.
At that stage,
we didn't involve industry
in that deliberately
because we wanted to be able to go to
our all party parliamentary
group on deafness
with some independence.
And we made a change plan,
from where we are to where we want to.
This is where we want to be.
We want to chase that
change the NICE guidelines.
What do we need to do?
What are the steps we need to do?
Guess what was the first step?
Raise awareness, media campaigns, stories,
getting it out there.
In a way, it's a little
bit like TripAdvisor
for cochlear implants (chuckles).
- I like that analogy, Sue (laughs).
- Well, you can do all
the professional awareness
that you like with GPs
but actually what'll sell an implant
to another adult with a hearing loss
is meeting another successful user.
- Yeah.
- Again, and again, and again.
I'm sure it's like your experience too.
- It is and with some
clients who've had one
and would like to get two,
and they would like to speak to someone.
We've had a couple who are
considering getting one
and have joined.
Actually the webinars have
been really good really,
they've really learned a lot
from joining the webinars
and then the join the Zoom meetings.
Even though they haven't
got their implant yet
they've joined in on those and
talking to other consumers,
and I know Ellen and the
team at the Hearing Host
are really good at introducing
potential new clients
to other clients to have
that conversation with.
And then we've got lots
of videos and stuff,
it's also nice to talk
to another recipient.
- It's hugely important
and if you think that wasn't
available 30 years ago,
which is so hard for those people
and now you can meet somebody else.
TripAdvisor for cochlear implants,
awareness was the first thing
but then actually working our way through.
When we pull together a
series of reports written
in language that
the nonprofessional could understand,
and pulling together literature reviews
that are evidence based,
but also doing some qualitative research,
which is giving the user story.
So we did a series of reports
and launched them in Parliament,
and then we pulled together the evidence
that would lead to the change
we hoped in the NICE guidance.
And another important group that we have.
I mentioned the British
Cochlear Implant Group before,
that Ellen was key too.
I've talked to both Ellen and Holly
before talking to you tonight,
and I know Holly's very
keen on awareness raising.
So the British Cochlear Implant
Group, did a lot of work.
We had a special edition of
Cochlear Implants International
about changing our NICE criteria
and we try to keep everybody
pointing in the same direction
with the same message
again and again, and again,
but with different angles.
Finally, last year, we got the
change in the NICE guidance.
But over the several years
that we've been at that adult implantation
in the UK has doubled.
- Wow, that's phenomenal.
- But,
there's always a but (laughs).
- Yeah.
- Yes, it's changed.
And once it gets into the NICE guidelines
then you actually managed to get funding
to go along with it.
So obviously last year, we
were actually delighted,
but in preparing to talk to you,
I've just been on
the British Cochlear Implant Group website
and they have very clear data on there.
Which actually, I think
would be helpful for you
in New Zealand to do
something similar because
if you want to know anything
the state of cochlear implants
in the UK, British Cochlear
Implant Group website.
But, the but is, the graph goes like this.
- Yeah.
- Early last year, we
got the NICE guidance.
And last year, the implantation rate
of adults has leveled off.
- Oh,
you would have thought
(mumbles) to increase.
- Yes.
Well, you weren't, wouldn't you?
- [Nick] Yeah.
- So with public policy work
you've never done (chuckles).
So we need to look at that very clearly.
So we've got the funding,
we've had awareness.
So is it because we've taken our foot off
the pedal as it were?
- Yeah, you sort of get a level
and you think, job well done,
and you sort of sit back and as you said,
you can't sit back in any public health.
With any public health initiative
you've got to continue
to better the outcomes
for your clients that you're meeting.
- I'm sorry, that's the message, yes.
Since 2012, 2013, yes, the
rate of adult implantation
in the UK has doubled if
you look at the graphs
but over the past year stabilized.
So there's the but.
The good news about that is
that I also think talking
with you in New Zealand,
this is a global phenomenon.
I've been talking to
people in the States today,
I've been talking to people
in Bratislava in Slovakia
and so on.
It is a global phenomenon
and what happens?
The progress in one country
can affect another one.
So our changes in NICE
guidance, for example,
have influenced the guidelines
in Belgium, in Netherlands,
in Sweden, in the Czech Republic.
People can take them elsewhere
and meanwhile, we have to do a
bit better a home (chuckles).
- It's a great achievement
because really changing the lives
of so many adults who are affected
by severe to profound hearing loss
and been able now to get
access to cochlear implants.
That's a huge because it is
life changing for them who,
especially since about for
so long to get better access.
(mumbles) maybe the
other turn of the coin is
we've got the access in some corners,
but we also need to continue
to work on awareness
because you need the referrals come in,
the people are where the
technology is available,
it is an option for them
and how do we address that?
Because maybe there's a gap
and that sort of referring to it
as opposed to access availability as well.
- Indeed and
I was talking to somebody today about,
and I know it's something
dear to your heart
and your next webinar is going
to be about GP awareness, isn't it?
- Yeah.
- Yeah.
I'm of an age where I'm
tested for many things.
I'm not tested for my hearing.
Adult hearing screening,
moving on GPA awareness that
it's not okay
to become deaf as you get
older and do nothing about it.
It's not just part of the aging process,
we need to have healthy aging today.
There's a growing elderly population
of which (chuckles)
inevitably you are going
to become part of and if you're
not that's really bad news
but if we move on, we really
need people to know that
there is actually something
that you can do about it.
- Maybe you could mention Sue,
when we were talking
before we came on air,
was when we talked about screening.
It normalizes it in a sense that
it is a part of the aging process
as opposed to all those
other screenings we get
when we get a little bit older
and then it brings it more into
the public arena as well as,
and into public health
when it becomes accepted
that this is an issue for people aging.
To age well, maintain
your health really well,
it is imperative that
you have good hearing
and access to good hearing.
- Absolutely, because what we
haven't really touched on is
that the huge economic data that we've got
about hearing loss, the
economic impact on society.
WHO reckon that it's 750
billion dollars a year.
- Wow.
- Untreated hearing loss.
And one of the things
we did in our campaign,
which was carefully thought out,
was we completely changed the narrative
about the cost of managing hearing loss,
because (mumbles).
If you tell them it's quite scary money
that the politicians will
think about, if you tell them,
only 7% of those who are appropriate
for cochlear implants are having them,
it's 25,000 pounds a time
then you can hear them going,
"Ching ching, ching ching, ching ching.
"Oh, we can't do this."
However, if you change
the story, and tell them
that the cost of not
providing cochlear implants
is bigger than the cost
of providing implants.
- Yeah.
- Then they start to listen.
That's a very simple
public health message.
So we did a campaign on spend to save.
- Yes
- And those spend
to save documents are now in 19 languages.
Translated by user groups, we
didn't spend a penny on it.
It's not always about
throwing money at it.
The user groups did it through
the European Cochlear Users Association
around Europe, changing
preservation, spend to save.
Spending money on hearing
care and cochlear implants,
saves society money and changes
lives, what's not to like?
Any politician can understand that.
- I think even whenever some
of our clients have gone
to meet with politicians,
they had no idea beforehand
until they actually
met a serious sentient.
It really opened their eyes
that's been really effective for us
whenever clients have actually
gone to meet with their MP
or a minister.
We can't underestimate the power of that
because as you said, they don't know
and think then whenever they get it.
I think sometimes when
decisions don't go our way
it's easy to get disheartened but
as you said, you've been
doing it for 30 years
and it's constantly the
same message over and over,
and over again, and you
just have to keep going over
and over, and over again.
- So sometimes you think, do I really have
to say this again?
And the answer is.
Because the other thing
about public policy work is
that so much of it is
short termism, isn't it?
- Yes.
- I'm sure you find that too.
People move on, you're
just getting somewhere
and they move on.
- Hopefully not a change in government.
You might be getting somewhere with one
and then you think we're
gonna get this over the line,
and then there's change of government
and their priorities are different
and they have to start right
back at square one again,
and then the government changes again.
- With hearing loss,
it still is behind others.
We've just the figures in the
UK for the amount of money
that spent on research by our government,
in different areas.
Pound per head of those
affected by disability.
Guess were hearing loss is?
Right at the bottom.
- So what would be the difference spend?
Could you give us some examples, Sue,
of the difference in spend?
Have you any idea?
- Huge, yes.
It's less than a pound per head affected
for those with hearing loss.
Whereas for vision, I think
it's 15 pounds a head,
that's quite a considerable difference.
If you're talking about cancer
or you're talking about heart,
then you're talking about
30, 40, 100 pounds per head,
but less than a pound.
We're not doing a very good job
at making that case and
need to do that better.
- Absolutely, when you consider
that level of investment
it's just ridiculous,
isn't it?
- It is, yes.
- Lets change talk a little bit.
The pandemic has thrown up
a big challenge for us all
and it's thrown off significant challenges
but I suppose opportunities as well.
Sue and me were talking about that.
Where do we even start in
the midst of a pandemic
where resources have been pulled
and diverted into managing COVID.
So those that have been
waiting for a cochlear implant
are sort of holding pattern if you like.
Unsure whether or not to get service,
should they post pone them
because if we postponed
how do we then advocate for.
I look at New Zealand
where our messaging was
in the middle of COVID.
Initially after your mental health,
even though you're isolated and lonely
but you need to get out
and still be in contact
with people using Zoom
but for our clients
that we're representing,
they're isolated and
lonely, a lot of the time
because of their disability.
- Indeed
- And it's really hard for
them to use digital technology
when they haven't got their implants yet.
- Indeed.
The impact has been so
sudden, hasn't it Nick?
- [Nick] Yeah.
- I remember
just looking here at a
photograph of myself.
I was in Tallinn in Estonia,
we were talking about implants
and developing their implant program.
Again, their implant
program was led by users
and parents and so on 20 years ago,
but second of March I'm in Tallinn
not having a clue about how life
was going to change so quickly.
And if you think about it,
we've had to learn a whole
new language quite quickly.
- Yeah.
- Yeah.
Coronavirus we haven't heard of,
who knew what PPP sorry
I can't even say it.
PPE was, who knew what lockdown was,
who knew what social
distancing was in March?
- [Nick] All new concepts.
- All new concepts.
So actually, that's quite a lesson to us.
We've all had to get used
to public health messages
extremely quickly
and people have done it, haven't they?
Look how you've managed it in New Zealand,
a lesson to the world
about how you've done it.
So we've actually come to terms with that,
to a certain extent.
We've come to terms with
daily news being filled with.
Who knew what the R rate was?
- Yeah, I know.
- We've got used to looking at that.
We've got used to
looking at the economics,
we've got used to that.
It's had a huge impact extremely quickly
and I think that it's
going to affect funding.
You've done extraordinarily
well in New Zealand
but tourism is going to be hit and so on.
So public health spends,
we're going to have to argue even harder.
How do we actually raise cochlear implants
when our hospitals are
looking at life and death?
How do we keep cochlear implants
on the public health financial agenda
when we're strapped for
cash and budgets are hit?
It's actually changing
how services are delivered
as well, isn't it, with social distancing?
I was talking to Holly.
Ellen was talking about
how she's really enjoying doing it online.
I'll come back to the mental
health bit in a second.
What I've also found interesting was.
So Ellen said she's happily doing online.
I talked to Kathy Berman in Sydney.
Telehealth is just growing.
When I was working in the hospital running
the implant program
and we used to ask about doing telehealth
and doing programming at home and so on.
The hospital IT department would all say,
"Oh, no, no, no, Sue
that's just not possible."
Bring a pandemic on and guess what?
- It is possible
- In two weeks (chuckles).
All the great stuff and
we have the technology,
cochlear have great technology.
We can program at home
that's happening from Sydney.
Southampton implant team's
doing some great stuff
and people actually like it.
They like being empowered.
They like being in control
at home of their technology
and the programming.
We need to put people in the driving seat
and in charge of their care,
and I think that's a lot of
what you're about as well.
- In New Zealand, Sue,
because we're such a
spread out country as well
I think the telehealth and
the initiatives that cochlear
had put in place for service delivery,
will be well taken up in the fight
that that already started
on this before a pandemic.
It was like quite fortuitous, wasn't it?
- It was.
So we've got it,
we don't have to go running
around looking for it.
It's actually there and
the research is done,
and people like it.
Teenagers don't wanna
go and sit in the clinic
and they can manage the
technology extraordinarily well,
it's very effective.
This is going on
and the other thing about the pandemic,
you said about mental
health and social isolation.
And as I say, we'll come back to that.
But it strikes me
what the user and advocacy groups
have come into their own at this time.
If you go on the website of
the European Cochlear Implant
Users Group you will see
so much information about
how to manage cochlear
implants during the pandemic.
- They've been really good at
putting that information out.
The resources, it's been phenomenal
and what I've even found
talking to some of our consumers
Sue, is that, whenever we
first did the webinars.
Oh, no, no, no, no.
And I say, "Well, you
can just watch you don't,
"we don't have to see you.
"It's just watching, try it and see."
They've actually really enjoyed
and it's been quite empowering
that they've been able to follow along,
be fully informed, learn something new.
It has, as you said, it's
been quite empowering
for them realizing that they're
learning another challenge,
enjoying another form of communication.
- Who knew?
Who was using zoom?
Everybody's Zooming here and
Zooming there (chuckles).
As you say, the technology is available
and I see the user and advocacy
groups just taking it on
and moving on.
So European Cochlear Implant
Users Group did a survey
within two days right across
30 countries across Europe.
The American Cochlear Implant Alliance,
fighting for telehealth to be and telecare
for cochlear implants
to be funded in the US
because it's not.
So they have materials on their website.
The Nordic advocacy groups do,
the UK advocacy organizations
and helping with a lot of misinformation.
I don't know whether
you're picking that up,
people concerned about the pandemic
and concerned about their.
Are they more prone to getting COVID-19?
Have you had that?
- Yeah, we have heard that,
which I think both Bill Baber
and Michelle Lee found Holly.
I'll addressed that that is not the case.
So they've been getting that message out
but there has been paused by a few
and then sometimes getting concerned
when surgeries come back online
will those surgeries be
safe enough to undertake
when they come back on.
- I think that's really important role
and the other issue
that's coming up again and again, is masks
because it masks the speech signal
and lip reading is
(chuckles) very difficult.
But for example, the Portuguese user group
has just got a Portuguese company
to manufacture masks with blank spaces
in the front and so on.
It really is moving on and as you said,
it is an opportunity
and one of the opportunities
as what you mentioned,
I'm coming back to,
is people are experiencing
social and mental isolation
in a way that they didn't
think was going to happen.
- Yeah, and it's been
really challenging for them.
I think that's the case
where we need to say where.
Especially here in New Zealand
when we have got clients
who are waiting sometimes
in excess of two years
because we've only got 40 implants.
Whenever we look at the
pandemic and the response
of making sure we looked
after people's mental health
but here is a vulnerable
group of people who are,
by default, isolated and lonely
and struggle with communication.
This is adding another layer
and we're still not addressing that need,
we need to make sure that
we address this waiting list
and get people off this waiting list.
In this time of crisis, it's just
they need to have their implants
and they need them
sooner rather than later.
That sort of a big thing for
us to get that message out,
really quite strongly down here.
- I think so and I think you
could have an opportunity,
because as I said at the beginning
of that bit of the conversation,
that society has actually got used
to thinking about public health language,
we've learned a lot
and could be open to
that sort of discussions
that maybe they haven't
thought about before
or thought that were taking place.
So I think it could give
you several openings
to keep up your pressure, about funding,
which we know is a big thing for you.
Fighting for funding.
- It is a big thing down here
and that's why it's been really good
to talk to you today, Sue.
I think we will take some key learnings
from you about how we continue to do it
and also to keep up
the momentum
because really, we've been trying to get.
Really what we want is equitable
access to CI for clients
and it's not equitable
at the moment, really
and I think that's just unfair.
What other tools in our toolbox
do we need to think of Sue,
to help us achieve equitable access,
or is it just keep going as best as we can
with our petitions and meeting our MPs
and telling our stories and getting
those cost benefit analysis
papers into government and
continuing with it all?
- I know.
You've got some wonderful tools
in your (chuckles) toolbox.
I've seen (chuckles) really
exciting tools in your toolbox.
One of the issues that I do see
when I was looking around is
the difficulty of getting
the sort of very clear data.
- Yes.
- That's easily (mumbles).
There's a lot of things we
don't get right in the UK
but the British Cochlear Implant Group,
if you go on their website,
that data over the years
is extremely clear.
This flattening of you're
immediately alerted
to difficulties, that's extremely clear.
If I go on your Ministry of Health website
that information about
cochlear implants seems
to be not exactly up to the minute
and the other thing that strikes me,
I know you've had some
huge successes in funding
but your baseline has remained
at 40 for what, 10 years.
- Probably eight or 10
years now and as you said,
we get one off fundings tend
to come every financial year for us
but that's not sustainable
and it's not the best way
for the programs to work
because they need to project over time,
and it's not fair on clients either
because they're in limbo.
So it's not the best
way to have a program.
We are grateful for the one
off funding don't get us wrong.
- That's the problem
and when you look at the graphs.
For people who are listening
I've prepared a presentation
that you'll load up afterwards,
which has a lot of this information on
and the references, and the graphs.
But when you look at your graphs although
your cumulative numbers
have gone up over time,
which is what you'd hope to see.
But your numbers implanted
per year, go up and down,
according to how you've got the funding.
And you say, that's not good for planning.
It's not good for building expert teams.
It's not good for the
long term management.
A key thing is it's not just about access,
it's about that life long
support that needs to be there
and that's only in place if
you've got sustainable funding.
You're not just reliant on
lurching from one to the other.
You're quite right about
those people who are waiting.
We did an interview study
of people who are waiting.
He used ruder language
than I'm prepared to say
on a webinar, but you know, he said,
"I have to go completely bloody
deaf, lose my job, et cetera
"before they'll give
me a cochlear implant."
Apart from the social and
emotional and personal things,
it's economically stupid
as well (chuckles).
- Sue, we've had a couple
of stories recently
of a couple of our clients who,
they were at risk of losing their jobs
and it's like they self funded
because they couldn't wait in limbo,
because their jobs were in jeopardy.
Which as you said the financial
decisions don't make sense
because if they lose their job,
they're needing to be
on welfare and support
which is gonna cost the
government much more
rather than implant them.
And we had a story here of
quite a famous cricketer,
Lance Kearns,
and he suddenly went from
being a $15,000 beneficiary
to paying much more than that
on tax the following financial year
after he had had his implant
because he was back being
fully employed again.
- Absolutely, we had a GP who
lost his hearing overnight,
he wasn't able to practice as a GP.
Then had his cochlear implant
within a month his back
working, paying taxes,
and by the way, found five
people on his caseload
who he referred for cochlear implants.
- It's a huge difference.
So before we get to the Q&A section,
have you any other thoughts
that you would like
to share with us before we take some Q&A?
Do you have any final
sort of words of wisdom?
- Words of wisdom (chuckles).
I'm still looking for the
experts, I have to say.
If anybody proclaims
themselves as an expert,
I think they've usually
missed the point (chuckles)
because they there is
always a but in life.
With PinDrop in New Zealand,
you have huge opportunities.
You've got great stuff going on there.
You've got great teams,
you've got lots of people
I know very well, and so on.
So you've got great opportunities
as well, keep going.
It's about listening.
It's about perseverance.
It's about sticking at it
and I think the key
things that you could look
for the future because you're so good
at putting those videos together.
You're so good about
putting the stories together
but some of that evidence just
very clearly and very simply.
- Yes.
- I think the thing that made
me aware of that was when
30 years ago had five minutes
with the Minister of Health,
what can you say in five
minutes to the minister?
So they haven't time
to look at your video.
They haven't time to
listen to a long story.
So they need that evidence and that data,
and you have an opportunity
in today's world.
Cochlear implants, save
society money and change lives.
(chuckles) Keep going.
- Well, thank you Sue.
So let's see if we've got
we've got some questions here.
I'm interested in your
ideas and what if anything,
this comes from Sonia,
we can do as parents to advocate
for single implants for
unilateral deafness caused by CMV.
So it might progress to the other ear.
- Interesting.
Looking at single sided deafness?
Looking for one implant
for single sided deafness.
I'm very happy if she wants
to email me about that,
about the evidence that there is available
and that the studies that
are currently taking place,
because that's a major issue
that's being looked at globally,
and particularly across Europe.
So she's absolutely right to bring it up
and to see it as an issue.
Our National Deaf Children Society
are doing some work about that, too,
which I'm really happy to share with her
and share that information.
I'm sure she's flagging up CMV.
CMV is a major issue, one of the biggest,
if not the biggest cause
of deafness in children
and so many people haven't
heard of cytomegalovirus.
I know you're concerned with adults,
but since we're talking about children,
lets just flag up CMV.
- Absolutely
and if you're happy for me to give
if Sonia emails us at PinDrop,
then I can do an introductory
email between you and Sonia.
So Sonia please do drop me a line
and I can do an introductory
email between you and Sue
- That's fine.
- And so thank you know, Cedric,
let's see what Cedric says.
It seems that most of us with hearing loss
are sharing the same experiences
with the funding people,
and it appears to me that
the politicians are bored
with all the same info
that they are receiving.
Do you think this is what's holding back
the funding we are hoping for?
- He thinks they're bored?
- I wouldn't think
politicians are bored because
the experiences are all
similar, aren't they?
Because it is the same for everyone,
as an individual story
but your story is the same
as somebody else's, the
experiences are similar.
- That's a really interesting
take Cedric that you think.
The other way to look
at it, Cedric is maybe
you can bore them into submission.
- (chuckles) Yes.
- But if the stories are the same,
it gives a huge strength
to your argument, Cedric,
and if his stories are the same,
it also lends a certain degree of validity
and credibility to them too.
So I think keep going
and as I said bore them
into submission so that they give up,
and give you the money.
- So we've got a couple of points here
from another person here, Sue.
So you discussed the
need to produce research
and use methods that
people will understand,
amid the point that some types of research
will be completely
incomprehensible to politicians.
Could you talk more about
the type of research
that you believe is most effective?
- That's really interesting, thank you.
There's the hierarchy of research evidence
and for many years you needed
to have a randomized
control trial before anybody
would believe that there was
any evidence worth having
but there are other research methodologies
such as qualitative research,
which is where I come from.
Which is used in the social sciences,
which has a rigor of its
own and for a long time,
it was disparaged in the
medical professions and so on,
but I see it coming out,
because we can actually use these methods
to find out what's really going on.
And actually, randomized control trials
are extraordinarily
difficult in this field
to really carry out.
And what we've found is that even NICE,
I was at a meeting of NICE
where the chief executive was there.
He had user groups in there,
and what he actually said
was his Scientific Committee,
who are very hard nosed,
when they see statistics after
statistic, after statistics
and graph, after graph, after
graph, their eyes glaze over.
But if you present user driven
research about the issues
that are really important in real life,
they suddenly perk up and he said,
the atmosphere in the room
and the decision making
can change completely.
So it can be hugely effective
and I do feel passionately
in case you haven't guessed,
that it actually should be a large part
of our research evidence.
The qualitative research rigorously done
to find out what's really
going on in users lives
and I think that that's
what's actually changed
public policy over over time.
- Well, thank you Sue
and I'll just take this one last one
because we are at 10:30
AM and I'm cognizant
of people needing to get back to work
and get on with their day and
also you Sue to to get to bed,
11:30 PM with you.
This last question, we'll take this one.
So when we look at innovation
in different sectors et cetera,
what innovation are we seeing globally
to bring the cost down of CI
to make them more affordable
for private funding?
- That's an interesting one too.
In fact, cochlear implants,
if you look at the cost
of the cochlear implant itself globally,
it's different in different countries.
Which has been the subject of a great deal
of debate globally,
and perhaps needs to be further looked at
but part of the cost of
cochlear implantation
is not only the initial
price, but the long term care,
and that adds up over time.
So that can be done in a much more time
and cost effective ways now,
particularly with telehealth and so on,
and that can actually bring down the cost.
But I think you're up to right
and that's quite a political issue,
thinking about bringing down
the cost of cochlear implantation.
- Yeah.
- But if we can get
the service delivery more effective,
then that is one way to do it.
- Well, thank you Sue.
It is 10:30 AM, it's
11:30PM with you at night
and I'm just so appreciative
of your time, Sue.
It hasn't just been today, having a chat,
it's been a couple of weeks of planning
and many Zoom meetings together.
I really just can't thank
you enough for joining us
from the UK and imparting
your wealth of experience.
We've been honored to have
you here in New Zealand
at our forum last year,
and hopefully you will be back
at some stage in the future.
If anybody does have any
questions, as we said,
please do email me
and I can do an
introductory email between.
Sue you're happy to answer
those questions further on
from today's webinar.
Thank you so much, everyone.
Thanks for joining us
and thank you, Sue, once again.
And any last words from you,
Sue, before we say good night
and good morning.
- Thank you.
I don't particularly like
being put up as an expert,
as I say, I'm always still
looking for the expert
but what I have done is put
together a presentation,
some slides, which
Nick's going to load up,
which will provide some information.
For the interested reader
you can look up the
references and look further.
If anybody does have a burning question,
I'd be really happy to try and answer it
and good luck to everybody.
I do know some great people out there
and you're doing a great job.
If it's any help, it's
challenging times globally
but we do need to keep going
and I do believe we're
making some progress.
- Thanks so much Sue.
On that note, we are motivated, inspired,
and we will keep going and we
will affect change eventually.
- Indeed (chuckles).
- Thank you so much, good night Sue.
- Goodnight.
- Thanks everybody
for joining us.
We'll have this recording
up on our website
with Sue's presentation
by Monday for you all.
So thank you all so much.
(soothing music)
