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Transcript
of programme
(Carol) - every parents worst nightmare - you’ve brought
them up to 15, its just devastating - worst thing that could ever happen to
anyone
(Furgie) - I couldn’t believe it at all - if he was ill it
would have been fine, but no warning just died, on the spot
In
denial for at least 3 months. It came to the point where I was drinking heavy -
every day bottle of vodka, take pain away. Mother in law looked after children
came
to the point where she said ‘either get yourself together or I’ll have to
take children away
(Paulette)
- He was always a healthy person, always
walked everywhere
Christian
never showed cardiac symptoms
We
obviously all miss him tremendously - massive void in our lives, unless you’ve
lost a person, thank God its only something you can imagine.
Another family suffers the
same awful trauma every month in Wales - the loss of a young apparently healthy
person. It’s called Sudden Adult
Death Syndrome and usually strikes without warning.
But SADS as it’s known isn’t seen as a political priority - and
didn’t even merit a mention when the National Assembly’s heart disease
strategy was unveiled in a high profile launch this week.
In the lottery of health care - SADS is a loser.
(Bryn John) -
I
think this merely reflects rarity of condition, and realisation by Assembly that
we have to concentrate on common conditions that kill many, not rare ones which
kill few
Sudden Adult Death Syndrome
is caused by a range of hidden heart defects.
It is relatively rare - officially claiming some 200 lives a year
in the UK. But Eye on Wales has
learned that new research to be published shortly will reveal that the true
figure is much higher. And it’s a
condition that can be
detected and treated - through screening programmes.
(William
McKenna)
- The problem is treatable - once you identify that you have it there are simple
treatments - drugs specialised pacemakers, this isn’t cardiac transplant or
having your head removed and put back on . these are simple acceptable
treatments available within the NHS. What we are doing is not enough.
act
of hymn, Assembly service, Graham Henry
(Link) 15 year old
Christian Thomas was a popular pupil at Ysgol Plasmawr in Cardiff.
At this special assembly, Wales and Lions rugby coach Graham Henry pays
tribute to the promising young sportsman who became another victim of Sudden
Adult Death Syndrome:
Act-
Graham Henry
A young, fit rugby player
may seem the least likely of candidates for a heart attack, but athletes can
actually be more at risk - by
pushing themselves to the limit they increase the risk of triggering a hidden
condition. Christian’s mother,
Carole Thomas, lives in Creigiau near Cardiff:
(Carole Thomas)
-
top try scorer, cycled from South Wales to North Wales - most active person you
could imagine - if anyone was to die of heart attack, my husband or myself, not
a fit active 15 year old child
he
was on his way home from friends house, ran across rd, collapsed and died and
that was it
it
was a tremendous shock - the desolation, loneliness that you feel - wouldn’t
wish upon anybody
(Act
there’s Daddy’s Star)
In Tenby, Caradoc James’s
children have their own special way of remembering him.
His widow Furgie took a long time to come to terms with his death:
(Furgie) - its just devastating - ripped us apart. One
minute you’re there, acting a normal life - he’s 29, 2 kids, went to work
and never came home. My little boy was 2½, little girl 5 ½
she understood, son didn’t understand - lot of tears in the house
The
grief of this sudden loss is often compounded by uncertainty and ignorance about
the cause of death. Alison Cox is
the founder of a charity called Cardiac Risk in the Young, or CRY, which
supports these families and campaigns to raise awareness of the condition:
(Alison)
- Definition of SADS - doesn’t appear to be
a cause of death.
Any
death of a young child is horrendous, but if you can visualise them dropping
dead in front of you etc.... you can imagine how trauma effects everyone
involved.
All
of these things are horrendous and they’re not being properly identified and
understood
ECG
act
Professor William McKenna
of St George’s hospital in London is the UK’s leading expert in diagnosing
cardiac problems in the young. He
believes the number of deaths from SADS is much higher than officially
recognised - and Eye on Wales has
been told that important new research to be published shortly by the British
Heart Foundation will confirm that:
(McKenna) - In our clinics we see 1 new family a
week....hard to know if its tip of iceberg or we’re seeing 80 - 90%
- my guess - there are 2- 400 young people dying suddenly each year
And
knowing that these are preventable and knowing the impact they have, I think
there should be a major effort.
There’s
a study St Georges etc... evidence should be available later in the year
(Alison) - Accurate stats not available but at least
4 deaths a week - under 35, cusp is 14
- 21. I’m convinced that the research coming out later in the year will show
that statistics are an underestimate.
(McKenna)
- If you look as a lobby, Sudden death in
young lobby is new
meningitis
lobby - similar no. of deaths and because these deaths are preventable and
because they’re young, I think every effort should be made to do what can be
done reasonably.
Act
- doorbell at Paulette’s house
(link)
- At Paulette Smith’s house in Swansea, Alison Cox arrives to discuss the
launch of a Welsh branch of Cardiac Risk in the Young.
Paulette’s son Christian was 24 when he died from myocarditis, one of
the 10 conditions of Sudden Adult Death Syndrome:
(Paulette) - Last weekend he was home, suffered flu like
symptoms, gone to bed that Fri eve, got up after a few hours, said he felt fine
Took
him back to train station - last
time I saw him, spoke to him every day that week and then no more
Only
when someone publishes true figures, which at the moment are difficult to get,
that people are going to sit up and be horrified re: true extent of SADS
Furgie also believes
Caradoc’s death could have been prevented.
With hindsight, she realises there were warning signs:
(Furgie)
had
a lot of palpitations - used to say you can’t handle your beer!’ - not
knowing it was what it was
I
don’t think enough doctors know -cos when Caradoc first went to doctors with
this problem, they told him it was cos he was doing too much work, strain on
heart. They didn’t know what they were looking for, maybe we wouldn’t be
having this conversation
Our
doctors down here now have read up about it, researched - they know a lot more
now -if someone comes in with problems, they don’t take it lightly like
before.
People
need to know if they have palpitations, dizziness - don’t worry about
inconveniencing anyone - get them to doctors, get them tested , least they’ve
got piece of mind then..
(Link)
Caradoc James
DID go to his doctor, but his condition wasn’t recognised - and it seems
that’s not unusual. There
aren’t always symptoms - but even if people are concerned enough to go to
their GP there’s no guarantee that the doctor will know what to look for.
We asked Bryn John, a GP
from Briton Ferry who represents the British Medical Association in Wales, what
he knew about Sudden Adult death syndrome:
(Bryn John) All GPs are aware its a condition that
exists, but doubt all know much about it - but it is after all a very rare
condition - each GP would probably not see one in whole career
I
have never seen a case - in 26 years. GPs
cannot be expert at everything
if
a rare condition is presented to us, we look it up - not reasonable for public
to expect GP to be expert in something that is after all exceedingly rare
Would
you say its that rare kills as many as meningitis...
I
don’t think that’s true -
possibly true since decrease in meningitis deaths, but my understanding is that
it kills about 4 young adults a month - throughout UK
-
so national incidence is actually extremely rare
Link - But is it ? We’ve
already heard UK expert Professor William McKenna’s estimate of up to 400
deaths a year - that’s eight times more than Bryn John says.
To bereaved parents like Paulette Smith and Carole Thomas, Dr John’s
approach typifies the attitude of the medical profession:
(Carol)I don’t think its as rare as we imagine.
Just 2 weeks after our son died
there
was another report in the paper of a young man, Swansea, died of same thing - it
can’t be that rare.
with
a doctor saying this, doesn’t help our cause
(Paulette) Unfortunately in this area, as far as GPs,
coroners, don’t seem to recognise what’s going on.
I
feel annoyed, frustrated, and its a feeling of uselessness, that my son’s died
needlessly Just because of the lack of preventative medicine
And many of these
fatalities CAN prevented. Some of
the conditions are treatable....once they’ve been diagnosed.
It’s too late for Diane Macdonald’s son Gareth, but she’s angry
that so little is done about these sudden deaths...
(Diane)
The
plaque reads ‘Gareth John Macdonald... 1972 - 2000...
I
just feel that when this strikes, it is so sudden there is nothing anyone can do
- it can only be detected in life, not in death
(what
do you think should be done then?)
Screening
should become automatic in schools - we give our children vaccinations for polio
meningitis, I think they could be screened at the same time
I’m
not saying it will pick up every one, but if there’s anything out there, at
least parents will know that they’ve done their best for their child
At the moment only those
who’ve already lost a close relative to
SADS are eligible for screening on the NHS.
It’s a situation Alison Cox from Cardiac Risk in the Young is
campaigning to change:
(Alison) - Our goal in Wales is to certainly introduce
screening. Gov't saying that they endorse a screening prog when a child has died
- what cost is that? That you have a dead child before you’re entitled to
screening? it turns my stomach to think that that is what they find acceptable
(Carol)
- I think screening has to be done - parents
have to be aware of conditions -you don’t always get the signs, you can’t
always be diagnosed - but with fit active kids, under 30, surely signs of
palpitations etc, should be investigated further
Christian Thomas’s mother
Carol again. But the government
decided against a mass screening programme after a study by the UK
National Screening Committee concluded it wouldn’t be effective.
The committee’s programme director is Dr Muir Gray:
(Muir Gray) When
we last looked at evidence, we did not think there was sufficient evidence to
recommend introduction of screening. Tests are not very useful for wide
population use - used in research settings
Do
you accept that lives are being lost needlessly?
On
the basis of evidence at the moment, no...
Link - But Alison Cox knows
first hand of many cases where life threatening heart conditions have been
detected by screening. Her
charity CRY runs a mobile unit staffed by a team from St George’s hospital,
and paid for by local fund raising.
She’s convinced that financial considerations played a major part in
the government’s decision:
(Alison)
- reason, we are finding kids that could drop
dead, - haven’t had any pre-medical care, so no cost to gov't.
We find them, conditions are usually treatable, that costs gov't money. At
the moment kids drop dead - no preliminary care/ aftercare - but must consider
trauma to friends/ family
(Link) In the last four
years, CRY’s mobile unit has visited Wales
only once - when local people in Tenby raised
thousands of pounds after the sudden death of Caradoc James ....
Maureen
photos act...
(Maureen)
My
name’s Maureen ward, my son Caradoc died from
HCM- If you go to doctors, family had a loss, only screen immediate
family - NHS can’t afford to screen everyone . We raised £3500 and brought
screening team from St Georges
Screened
48 in weekend - 7 were found to have slight probs - Caradocs dad carrier, nephew
full blown - but he’s being treated successfully, lives perfectly normal life
(David)
Intro - diagnosed shortly after Caradoc’s death
Act
- What I’ve got here is the tablets for my heart problem which I’ve known
for past 5 years
You’re
able to live a relatively normal life though, because of this medication?
Yes
I’ve got to take things easy, can’t do as much as I used to - exercise etc
Living
proof that Screening works? Yes - if its caught early, can be treated -
screening is a good idea
Thanks
to Caradoc - yes wouldn’t have found out if he hadn’t died
Gym
act... play under link, fade out at end...
Link - A typical school PE
lesson ......(play up act) ....but for those with a cardiac condition, strenuous
exercise can actually cause the heart to stop.
Here at Pembroke school, two pupils have died from SADS in the last 10
years, one of them during a Fun Run. The headteacher is Frank Cicotti....
(Frank)
This obviously sharpens your mind. Decided to send letters to children doing
additional PE...quite likely to have a collapse. 80% wanted children to be
involved in screening programme - high response, reflects concern amongst
parents and staff. Last thing a teacher would want is someone collapsing and
dying in front of them
Link - But even
though the school, the parents and Cardiac Risk in the Young are keen for these
young athletes to be screened, medical opinion remains divided, and for the time
being, the Health authority has withheld its permission.. The screening would
have been carried out by CRY -
It’s a situation which Alison Cox
finds frustrating, and she believes we could learn some lessons from other
countries
(Alison )
In America, large no. of schools introduce
screening - my son was at Uni., kid dropped dead, son had an ECG test, had
abnormality had to stop sport.
I
feel v. strongly that screening saved my son’s life
What
we would like in this country is to see ECG testing in schools, but at the v.
least, for anyone who competes in sport
In
Italy anyone who does sport at any age/ standard has to have a fitness license -
it is liability of school/ club if death occurs
(William McKenna)
within
sporting community we’ve been advocating
evaluation of these athletes in sporting community (prof. Footballers etc)
sporting
community should take responsibility when young athlete faints, could be food/
drink - shouldn’t be assumed - cardiac problem
Professor William McKenna
again. I put it to Dr Muir Gray
from the National Screening Committee, that in Italy and the United States,
lives had been saved by screening young athletes..
(Muir Gray) - These things always difficult to evaluate -
can’t always attribute lack of a death to the test - its a possibility. The St
Georges study is looking at it at the moment - we’ll see any new evidence when
it comes out. But from the evidence we had when we last considered it (end of
’99), we did not think there was good evidence at that time to bring it
forward.
These tests aren’t cheap
- to have one done privately costs £500 a time.
For GPs with a full waiting room like Dr Bryn John,
a screening programme isn’t something they’d readily prescribe on the
NHS:
(Bryn John) we have
to ask ourselves if NHS can afford it, time to do it, would we pick it up if we
did, workload that would fall on secondary centre if we had suspicions
Quite
frankly, so many other demands on NHS time and resources, would not be feasible
Principal
cause of young death (under 60) - heart disease, strokes, cancers
we
owe it to public to concentrate on those in first instance
Plenty
do without looking for more? I think that sums it up nicely
(McKenna)
-colleagues say why do you go looking for trouble - can’t cope
my
perspective is that 90% is 60 - 80 years of age - but the impact that those
young sudden deaths have is enormous
Professor William McKenna
again. Relatives of those who’ve
been struck by Sudden Adult Death Syndrome, like Carol Thomas, find rationing of
healthcare difficult to accept...
(Carol)
the
fact that some people saying its not a priority defies belief
so
any arguments re: money - don’t mean anything
If
you ask any parent, they’ll say same - what cost do you put on a child’s
life?
You
never can imagine -you would give anything, sell house just to see child grow up
Link - Last Tuesday the
National Assembly published its strategy for
tackling heart disease in Wales in a 54 page document - there wasn’t a single
word about Sudden Adult Death Syndrome
We asked health minister Jane Hutt for an interview to discuss the issues
raised in this programme - she declined.
But Dr Bryn John from the BMA feels the Assembly is justified in not
making SADS a top priority....
(Bryn John)
I
think Assembly already has plenty to do with Health service
introducing
Nat Service framework for variety of conditions - cardiovascular framework just
been published, nothing about this condition in there
But
this merely reflects rarity of condition, and realisation by Assembly that we
have to concentrate on common conditions that kill many, not rare ones which
kill few
does
cost come into that?
Without
a doubt - but not only a financial cost - time involved , no time to do much
more
Experts
would say that some of these deaths are preventable, if there was more
screening/ awareness - are you saying its at bottom of priority list? Some
people will have to die?
I
think many of us would like to see more money put into health service
In
fairness to assembly/ gov't, more is being put in - but we do have to have list
of priorities
If
priority is to spend same amount of money and save thousands of lives, or spend
same money and save v. few lives, the choice although difficult, must be
rational
For these grieving mothers
though, the deaths of their healthy young sons seem to be far from rational:
(Carol) Its beyond belief that 4 lives a week could be saved if there was a
screening prog, and if people were aware enough to know that they could have
their children screened
If
you could say one thing to Jane Hutt, what would it be?
Not
to negate these 4 lives that could be saved
its
something that is out there - true figures as yet unknown
I
believe its something that needs to be addressed as a matter of urgency
(Paulette)
- every day of the week, in some part of the
country, you’ll read about a young person found dead, and its wrong.
Especially when we have got the equipment
(Maureen)
- we need to raise awareness - don’t want to panic people - some poor mother
thinks ‘ my child’s got palpitations, he’s going to drop dead’ - we just
want to raise awareness of the fact that it is a silent killer, and we need to
protect our children
The transcript from 'Eye on
Wales' has been reproduced with permission from BBC Radio Wales' weekly current
affairs programme
broadcast every Sunday at 1pm and repeated on Tuesday at 6pm, on 882MW and
93-104FM
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