pop your hands up if you or a family member or a friend have been affected by
member or a friend have been affected by
member or a friend have been affected by a lifelong health condition I would
a lifelong health condition I would
a lifelong health condition I would think nearly everybody have you had to
think nearly everybody have you had to
think nearly everybody have you had to have a conversation with somebody or
have a conversation with somebody or
have a conversation with somebody or maybe with a young person because
maybe with a young person because
maybe with a young person because somebody’s been diagnosed or being given
somebody’s been diagnosed or being given
somebody’s been diagnosed or being given the news that they’re living with a
the news that they’re living with a
the news that they’re living with a lifelong health condition again probably
lifelong health condition again probably
lifelong health condition again probably most of us have had to do that what if
most of us have had to do that what if
most of us have had to do that what if you could have a conversation with
you could have a conversation with
you could have a conversation with somebody that could possibly prevent
somebody that could possibly prevent
somebody that could possibly prevent them living with a lifelong health
them living with a lifelong health
them living with a lifelong health condition would you grab that
condition would you grab that
condition would you grab that opportunity
I really passionately believe in the
I really passionately believe in the power of conversation being one of the
power of conversation being one of the
power of conversation being one of the best prevention tools we have as human
best prevention tools we have as human
best prevention tools we have as human beings we can converse we can talk
beings we can converse we can talk
beings we can converse we can talk I appreciate it’s ironic standing here
I appreciate it’s ironic standing here
I appreciate it’s ironic standing here delivering a monologue when I’m
delivering a monologue when I’m
delivering a monologue when I’m advocating for dialogue to put this into
advocating for dialogue to put this into
advocating for dialogue to put this into context I want to talk to you today
context I want to talk to you today
context I want to talk to you today about sex and about sexual health and if
about sex and about sexual health and if
about sex and about sexual health and if we’re talking about as brits here that
we’re talking about as brits here that
we’re talking about as brits here that tends to turn is off but I hope you’ll
tends to turn is off but I hope you’ll
tends to turn is off but I hope you’ll keep listening sex actually turned my
keep listening sex actually turned my
keep listening sex actually turned my life upside down 12 years ago my life
life upside down 12 years ago my life
life upside down 12 years ago my life was turned upside down because of sex we
was turned upside down because of sex we
was turned upside down because of sex we all know there are outcomes of sex we
all know there are outcomes of sex we
all know there are outcomes of sex we all are the outcomes of two people
all are the outcomes of two people
all are the outcomes of two people having had sex even if we don’t want to
having had sex even if we don’t want to
having had sex even if we don’t want to think what our parents were doing nine
think what our parents were doing nine
think what our parents were doing nine months before we were born for me there
months before we were born for me there
months before we were born for me there were three major outcomes of sex so 12
were three major outcomes of sex so 12
were three major outcomes of sex so 12 years ago in an 18-month period I became
years ago in an 18-month period I became
years ago in an 18-month period I became a mum I became a widow and I was
a mum I became a widow and I was
a mum I became a widow and I was diagnosed with HIV three major
diagnosed with HIV three major
diagnosed with HIV three major implications to my life of sex life was
implications to my life of sex life was
implications to my life of sex life was turned upside down
my beautiful son he sat here today
my beautiful son he sat here today cringing that his mother’s constantly
cringing that his mother’s constantly
cringing that his mother’s constantly banging on about sex and sexual health
banging on about sex and sexual health
banging on about sex and sexual health the death of my partner to an
the death of my partner to an
the death of my partner to an aids-defining infection and my own
aids-defining infection and my own
aids-defining infection and my own lifelong health condition I’m living
lifelong health condition I’m living
lifelong health condition I’m living with HIV I used that story now and it’s
with HIV I used that story now and it’s
with HIV I used that story now and it’s taken me all around the world to share
taken me all around the world to share
taken me all around the world to share my story and how our precious family of
my story and how our precious family of
my story and how our precious family of three became a family of two and how
three became a family of two and how
three became a family of two and how that happened and why that happened in
that happened and why that happened in
that happened and why that happened in the conversations that we can have that
the conversations that we can have that
the conversations that we can have that actually might prevent that happening to
actually might prevent that happening to
actually might prevent that happening to another family
if we go back 12 years and I’ll share a
if we go back 12 years and I’ll share a little story Benjamin my partner had
little story Benjamin my partner had
little story Benjamin my partner had been at work on the Friday and he came
been at work on the Friday and he came
been at work on the Friday and he came home complaining of a headache and he
home complaining of a headache and he
home complaining of a headache and he went to bed
went to bed
went to bed I thought he had man flu and I really
I thought he had man flu and I really
I thought he had man flu and I really felt that’s how serious it was and man
felt that’s how serious it was and man
felt that’s how serious it was and man flu is very serious if you’ve ever
flu is very serious if you’ve ever
flu is very serious if you’ve ever suffered from it so he went to bed but
suffered from it so he went to bed but
suffered from it so he went to bed but by the Sunday so two days later he
by the Sunday so two days later he
by the Sunday so two days later he clearly wasn’t well and so we had to
clearly wasn’t well and so we had to
clearly wasn’t well and so we had to call for an ambulance and we were taken
call for an ambulance and we were taken
call for an ambulance and we were taken to the hospital he was poked and prodded
to the hospital he was poked and prodded
to the hospital he was poked and prodded and tested and interrogated as they
and tested and interrogated as they
and tested and interrogated as they tried to decide what I noticed was wrong
tried to decide what I noticed was wrong
tried to decide what I noticed was wrong with him
with him
with him they didn’t know they couldn’t work it
they didn’t know they couldn’t work it
they didn’t know they couldn’t work it out but he was declining and three days
out but he was declining and three days
out but he was declining and three days later in a neurological intensive care
later in a neurological intensive care
later in a neurological intensive care unit they said we don’t know what is
unit they said we don’t know what is
unit they said we don’t know what is wrong with him and we’re only going to
wrong with him and we’re only going to
wrong with him and we’re only going to find out through the post mortem
Benjamin died five hours later
Benjamin died five hours later peacefully calmly in a side room and we
peacefully calmly in a side room and we
peacefully calmly in a side room and we left none the wiser it took five months
left none the wiser it took five months
left none the wiser it took five months for the coroner’s report to come through
for the coroner’s report to come through
for the coroner’s report to come through and I went to the GP to sit with him to
and I went to the GP to sit with him to
and I went to the GP to sit with him to go through this document they’re quite
go through this document they’re quite
go through this document they’re quite weighty they’re quite macabre I also
weighty they’re quite macabre I also
weighty they’re quite macabre I also found it fascinating but I also had no
found it fascinating but I also had no
found it fascinating but I also had no idea walking into that GP appointment
idea walking into that GP appointment
idea walking into that GP appointment that life was once again going to turn
that life was once again going to turn
that life was once again going to turn upside down life really did turn upside
upside down life really did turn upside
upside down life really did turn upside down because not only did I walk out of
down because not only did I walk out of
down because not only did I walk out of the GP surgery clutching the coroner’s
the GP surgery clutching the coroner’s
the GP surgery clutching the coroner’s report I also walked out with a piece of
report I also walked out with a piece of
report I also walked out with a piece of paper sending me for a blood test to be
paper sending me for a blood test to be
paper sending me for a blood test to be tested for HIV something which had never
tested for HIV something which had never
tested for HIV something which had never entered my consciousness my thought
entered my consciousness my thought
entered my consciousness my thought processes it wasn’t in my life on my
processes it wasn’t in my life on my
processes it wasn’t in my life on my only touch point of hate Jovie at that
only touch point of hate Jovie at that
only touch point of hate Jovie at that point was mark Fowler in EastEnders
point was mark Fowler in EastEnders
point was mark Fowler in EastEnders so off I went to be tested my tests came
so off I went to be tested my tests came
so off I went to be tested my tests came up positive and so of course our child
up positive and so of course our child
up positive and so of course our child had to go for testing to buy whatever
had to go for testing to buy whatever
had to go for testing to buy whatever miracle they HIV negative and I will I’m
miracle they HIV negative and I will I’m
miracle they HIV negative and I will I’m grateful every day that that’s how that
grateful every day that that’s how that
grateful every day that that’s how that panned out
panned out
panned out but it also meant then I could actually
but it also meant then I could actually
but it also meant then I could actually focus on him okay I’m now a single
focus on him okay I’m now a single
focus on him okay I’m now a single parent I’m now living with a lifelong
parent I’m now living with a lifelong
parent I’m now living with a lifelong hugely stigmatized health condition
hugely stigmatized health condition
hugely stigmatized health condition what’s next how do I deal with this and
what’s next how do I deal with this and
what’s next how do I deal with this and what I chose to do was I went through a
what I chose to do was I went through a
what I chose to do was I went through a local support group and I spoke to them
local support group and I spoke to them
local support group and I spoke to them and through that group the BBC got in
and through that group the BBC got in
and through that group the BBC got in touch and they were really struggling to
touch and they were really struggling to
touch and they were really struggling to find somebody who ticked the boxes that
find somebody who ticked the boxes that
find somebody who ticked the boxes that I tick I am a heterosexual white woman
I tick I am a heterosexual white woman
I tick I am a heterosexual white woman living with HIV and they couldn’t find
living with HIV and they couldn’t find
living with HIV and they couldn’t find somebody who ticked those boxes that was
somebody who ticked those boxes that was
somebody who ticked those boxes that was willing to stand up and say I’m living
willing to stand up and say I’m living
willing to stand up and say I’m living with this virus
with this virus
with this virus I don’t tend to do things by halves and
I don’t tend to do things by halves and
I don’t tend to do things by halves and so when they asked if I would take part
so when they asked if I would take part
so when they asked if I would take part in the program
in the program
in the program I said yes Jenny and I spent the day was
I said yes Jenny and I spent the day was
I said yes Jenny and I spent the day was Stephen Fry at her house and we had a
Stephen Fry at her house and we had a
Stephen Fry at her house and we had a great day and they filmed and we talked
great day and they filmed and we talked
great day and they filmed and we talked and we conversed and we chatted about
and we conversed and we chatted about
and we conversed and we chatted about all sorts far beyond the few minutes
all sorts far beyond the few minutes
all sorts far beyond the few minutes that made it into the program and
that made it into the program and
that made it into the program and actually it was a really empowering
actually it was a really empowering
actually it was a really empowering experience to take part and to stand up
experience to take part and to stand up
experience to take part and to stand up and say actually people please hear what
and say actually people please hear what
and say actually people please hear what I have to say please consider it please
I have to say please consider it please
I have to say please consider it please maybe go get tested that was the start
maybe go get tested that was the start
maybe go get tested that was the start of my sort of public speaking and
of my sort of public speaking and
of my sort of public speaking and opening up about I mean what happened
opening up about I mean what happened
opening up about I mean what happened our little family and our story so as I
our little family and our story so as I
our little family and our story so as I said since then I was taking me all
said since then I was taking me all
said since then I was taking me all around the world to share what happened
around the world to share what happened
around the world to share what happened to us and a couple of years ago I set up
to us and a couple of years ago I set up
to us and a couple of years ago I set up a social enterprise because I truly
a social enterprise because I truly
a social enterprise because I truly believe in the power of conversation and
believe in the power of conversation and
believe in the power of conversation and enabling conversations so what myself
enabling conversations so what myself
enabling conversations so what myself and our team do is we encourage young
and our team do is we encourage young
and our team do is we encourage young people and the professionals who work
people and the professionals who work
people and the professionals who work with them to tackle the conversations
with them to tackle the conversations
with them to tackle the conversations that actually lots of adults would much
that actually lots of adults would much
that actually lots of adults would much rather avoid and just not have and
rather avoid and just not have and
rather avoid and just not have and that’s not good enough
that’s not good enough
that’s not good enough so the favorite part of my job my faith
so the favorite part of my job my faith
so the favorite part of my job my faith days in not in the office are when I get
days in not in the office are when I get
days in not in the office are when I get to go into secondary schools and I get
to go into secondary schools and I get
to go into secondary schools and I get to sit with young people and talk to
to sit with young people and talk to
to sit with young people and talk to them and hear what they’re up to
them and hear what they’re up to
them and hear what they’re up to and what am i hearing it’s frightening
and what am i hearing it’s frightening
and what am i hearing it’s frightening we have a generation failed we have a
we have a generation failed we have a
we have a generation failed we have a generation with very little if not zero
generation with very little if not zero
generation with very little if not zero sexual health bullet they have very
sexual health bullet they have very
sexual health bullet they have very often poor communication skills and they
often poor communication skills and they
often poor communication skills and they need help with all of those things to
need help with all of those things to
need help with all of those things to actually have the healthy happy lives
actually have the healthy happy lives
actually have the healthy happy lives that they’ve truly deserve and should be
that they’ve truly deserve and should be
that they’ve truly deserve and should be we all want those things for our
we all want those things for our
we all want those things for our children and for our young people and
children and for our young people and
children and for our young people and for our next generations these young
for our next generations these young
for our next generations these young people also don’t have awareness of the
people also don’t have awareness of the
people also don’t have awareness of the the icebergs and the tombstone campaigns
the icebergs and the tombstone campaigns
the icebergs and the tombstone campaigns when the HIV epidemic hit in the 80s
when the HIV epidemic hit in the 80s
when the HIV epidemic hit in the 80s it may service in this room will
it may service in this room will
it may service in this room will remember those days are gone and these
remember those days are gone and these
remember those days are gone and these young people are not high risk enough to
young people are not high risk enough to
young people are not high risk enough to warrant a dedicated campaign talking to
warrant a dedicated campaign talking to
warrant a dedicated campaign talking to them so what I see in schools is often
them so what I see in schools is often
them so what I see in schools is often that they may learn about HIV when we’re
that they may learn about HIV when we’re
that they may learn about HIV when we’re looking at this specifically as a virus
looking at this specifically as a virus
looking at this specifically as a virus and they may have a very much a biology
and they may have a very much a biology
and they may have a very much a biology based lesson so they may see this is
based lesson so they may see this is
based lesson so they may see this is what a virus looks like this is how it
what a virus looks like this is how it
what a virus looks like this is how it replicates and this is the job it does
replicates and this is the job it does
replicates and this is the job it does that’s all well and good but that piece
that’s all well and good but that piece
that’s all well and good but that piece of Education is not going to keep you
of Education is not going to keep you
of Education is not going to keep you safe when you want to get jiggy and
safe when you want to get jiggy and
safe when you want to get jiggy and intimate with somebody so they may then
intimate with somebody so they may then
intimate with somebody so they may then learn about condoms and actually what
learn about condoms and actually what
learn about condoms and actually what that tends to look like if they do do
that tends to look like if they do do
that tends to look like if they do do that in schools is that the child was
that in schools is that the child was
that in schools is that the child was sitting in the back of the class and
sitting in the back of the class and
sitting in the back of the class and somebody over there will really
somebody over there will really
somebody over there will really awkwardly put a condom on something that
awkwardly put a condom on something that
awkwardly put a condom on something that looks nothing like many penises
looks nothing like many penises
looks nothing like many penises I’ve ever seen and expect through
I’ve ever seen and expect through
I’ve ever seen and expect through osmosis that I will learn that technique
osmosis that I will learn that technique
osmosis that I will learn that technique there aren’t many techniques do we
there aren’t many techniques do we
there aren’t many techniques do we expect people to learn through watching
expect people to learn through watching
expect people to learn through watching it once and never again heaven forbid if
it once and never again heaven forbid if
it once and never again heaven forbid if we taught first aid in that way it would
we taught first aid in that way it would
we taught first aid in that way it would be you know the outcomes would be
be you know the outcomes would be
be you know the outcomes would be frightening so what do I want to see and
frightening so what do I want to see and
frightening so what do I want to see and what do I talk to about talk to young
what do I talk to about talk to young
what do I talk to about talk to young people about well actually we have a
people about well actually we have a
people about well actually we have a very different-looking toolkit in the UK
very different-looking toolkit in the UK
very different-looking toolkit in the UK today and that toolkit contains five
today and that toolkit contains five
today and that toolkit contains five main things the first one it’s a given
main things the first one it’s a given
main things the first one it’s a given that we need to be talking about condoms
that we need to be talking about condoms
that we need to be talking about condoms but we need to talk beyond conception
but we need to talk beyond conception
but we need to talk beyond conception prevention and the heteronormative
prevention and the heteronormative
prevention and the heteronormative language of mummy and daddy and actually
language of mummy and daddy and actually
language of mummy and daddy and actually what we’re preventing is pregnancy
what we’re preventing is pregnancy
what we’re preventing is pregnancy because it does a disservice to all of
because it does a disservice to all of
because it does a disservice to all of the the range of genders and sexualities
the the range of genders and sexualities
the the range of genders and sexualities that we have that actually a condom
that we have that actually a condom
that we have that actually a condom doesn’t necessarily apply to or actually
doesn’t necessarily apply to or actually
doesn’t necessarily apply to or actually the act that you’re doing is a condom
the act that you’re doing is a condom
the act that you’re doing is a condom the appropriate one so that’s something
the appropriate one so that’s something
the appropriate one so that’s something we need to explore beyond
we need to explore beyond
we need to explore beyond the second one is testing and actually
the second one is testing and actually
the second one is testing and actually accessing sexual health services because
accessing sexual health services because
accessing sexual health services because that’s there’s mythical places they do
that’s there’s mythical places they do
that’s there’s mythical places they do exist are often crowded crowded in
exist are often crowded crowded in
exist are often crowded crowded in mystery and shame and stigma we need to
mystery and shame and stigma we need to
mystery and shame and stigma we need to educate young people to actually access
educate young people to actually access
educate young people to actually access and turn to support to get help and
and turn to support to get help and
and turn to support to get help and actually talk to people about their
actually talk to people about their
actually talk to people about their sexual health in the same way a young
sexual health in the same way a young
sexual health in the same way a young person I would hope would turn quite
person I would hope would turn quite
person I would hope would turn quite happily to call the GP or to make a
happily to call the GP or to make a
happily to call the GP or to make a dentist appointment sexual health needs
dentist appointment sexual health needs
dentist appointment sexual health needs to become akin to those things to live
to become akin to those things to live
to become akin to those things to live well the third thing that we’re looking
well the third thing that we’re looking
well the third thing that we’re looking at then is treatment as prevention and
at then is treatment as prevention and
at then is treatment as prevention and actually myself as a hecho pasar
actually myself as a hecho pasar
actually myself as a hecho pasar hiv-positive woman on treatment if I
hiv-positive woman on treatment if I
hiv-positive woman on treatment if I maintain my treatment and for six months
maintain my treatment and for six months
maintain my treatment and for six months maintain an undetectable viral load
maintain an undetectable viral load
maintain an undetectable viral load which means if you test my blood you
which means if you test my blood you
which means if you test my blood you will find an undetectable level of the
will find an undetectable level of the
will find an undetectable level of the virus
virus
virus I’m actually not infectious to a sexual
I’m actually not infectious to a sexual
I’m actually not infectious to a sexual partner and that’s massive news because
partner and that’s massive news because
partner and that’s massive news because by increasing testing and increase in
by increasing testing and increase in
by increasing testing and increase in people and treatment we could actually
people and treatment we could actually
people and treatment we could actually end new infection why would we not want
end new infection why would we not want
end new infection why would we not want that so the next one is another use of
that so the next one is another use of
that so the next one is another use of treatment which actually helps people
treatment which actually helps people
treatment which actually helps people maintain their HIV negative status and
maintain their HIV negative status and
maintain their HIV negative status and again young people are not learning that
again young people are not learning that
again young people are not learning that these two tools exist a little bit like
these two tools exist a little bit like
these two tools exist a little bit like the contraceptive pill you can have the
the contraceptive pill you can have the
the contraceptive pill you can have the contraceptive pill that you take on a
contraceptive pill that you take on a
contraceptive pill that you take on a regular basis to prevent conception you
regular basis to prevent conception you
regular basis to prevent conception you can also take the morning-after pill
can also take the morning-after pill
can also take the morning-after pill after the event when you think okay
after the event when you think okay
after the event when you think okay maybe I need some some coverage here and
maybe I need some some coverage here and
maybe I need some some coverage here and actually we have treatments available to
actually we have treatments available to
actually we have treatments available to do a similar job to prevent HIV
do a similar job to prevent HIV
do a similar job to prevent HIV infection treatments that can be taken
infection treatments that can be taken
infection treatments that can be taken before or after exposure to prevent a
before or after exposure to prevent a
before or after exposure to prevent a HIV positive diagnosis again why are
HIV positive diagnosis again why are
HIV positive diagnosis again why are young people not learning that we have
young people not learning that we have
young people not learning that we have these tools available and actually they
these tools available and actually they
these tools available and actually they might be appropriate to them they’re not
might be appropriate to them they’re not
might be appropriate to them they’re not appropriate for everybody in the same
appropriate for everybody in the same
appropriate for everybody in the same way the contraceptive pill isn’t but
way the contraceptive pill isn’t but
way the contraceptive pill isn’t but they are options and options are always
they are options and options are always
they are options and options are always better
better
better now the most important parts of this
now the most important parts of this
now the most important parts of this toolkit for me is the fifth component
toolkit for me is the fifth component
toolkit for me is the fifth component and this component is exactly what I’m
and this component is exactly what I’m
and this component is exactly what I’m advocating for it’s having a
advocating for it’s having a
advocating for it’s having a conversation because if we don’t have
conversation because if we don’t have
conversation because if we don’t have the skills to talk to one another then
the skills to talk to one another then
the skills to talk to one another then they are the relationship part of sex
they are the relationship part of sex
they are the relationship part of sex education when I firmly believe in
education when I firmly believe in
education when I firmly believe in putting the are at the beginning not the
putting the are at the beginning not the
putting the are at the beginning not the s re that we talk about actually means
s re that we talk about actually means
s re that we talk about actually means that we can then have the skills and the
that we can then have the skills and the
that we can then have the skills and the ability to have really healthy
ability to have really healthy
ability to have really healthy relationships in every part of our life
relationships in every part of our life
relationships in every part of our life whether that’s with friends with
whether that’s with friends with
whether that’s with friends with intimate lovers with family you know in
intimate lovers with family you know in
intimate lovers with family you know in workplaces because actually if we can
workplaces because actually if we can
workplaces because actually if we can have a conversation we can negotiate
have a conversation we can negotiate
have a conversation we can negotiate consent we can talk about our likes and
consent we can talk about our likes and
consent we can talk about our likes and our desires and our pleasure we can talk
our desires and our pleasure we can talk
our desires and our pleasure we can talk about negotiating risk and actually
about negotiating risk and actually
about negotiating risk and actually what’s appropriate for ourselves because
what’s appropriate for ourselves because
what’s appropriate for ourselves because our levels of risk everybody in this
our levels of risk everybody in this
our levels of risk everybody in this room will have a different level it also
room will have a different level it also
room will have a different level it also means that we can talk about what’s
means that we can talk about what’s
means that we can talk about what’s important to us and actually what’s
important to us and actually what’s
important to us and actually what’s appropriate and what’s not why would we
appropriate and what’s not why would we
appropriate and what’s not why would we not want to open up that conversation
not want to open up that conversation
not want to open up that conversation and have those skills to allow people to
and have those skills to allow people to
and have those skills to allow people to have really good conversations and yes
have really good conversations and yes
have really good conversations and yes they main use those skills to talk about
they main use those skills to talk about
they main use those skills to talk about sex and heaven forbid what’s the worst
sex and heaven forbid what’s the worst
sex and heaven forbid what’s the worst thing that can happen they may not live
thing that can happen they may not live
thing that can happen they may not live with a lifelong health condition so I’d
with a lifelong health condition so I’d
with a lifelong health condition so I’d like to ask you again if you had the
like to ask you again if you had the
like to ask you again if you had the opportunity to sit with somebody and
opportunity to sit with somebody and
opportunity to sit with somebody and have a conversation that may prevent
have a conversation that may prevent
have a conversation that may prevent that person living with a lifelong
that person living with a lifelong
that person living with a lifelong health condition would you grab the
health condition would you grab the
health condition would you grab the opportunity thank you
opportunity thank you
opportunity thank you [Applause]
[Applause]
[Applause] you
”
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