[tri-med] Re: Public Health Care Alert in UK

----- Original Message ----- 
From: "Fawna Lockwood"
> Just a thought, but maybe it's the impression received from listening to
> your prolonged effort required to get the master's battery changed in his
> pacemaker.

Ahhhh but that was the doctor and in part the hospital not medicare. Thanks 
to medicare we have the option to ditch that doctor which we have and to 
choose another doctor which we have. The problem is that we only have half a 
dozen pediatric cardiac specialists in the state and all of them seem to 
have a no treat attitude to trisomy (or at least a bare minimum treat 
attitude which is what Alex got). So we go interstate. I also had the right 
to complain about that doctor - which I am doing.

And that you never could get the care he needed to prevent his
> hearing loss progression.

But we did - the bottom line was that they had no idea why his hearing loss 
was progressing (that cost me $150 privately). Yes I am limited in my choice 
as to which hearing aid he can get, because the system doesn't recognise the 
significance of monaural loss. But thats the same in the US. Hearing aids 
are NOT covered by medicare. That is a different scheme. Free hearing aids 
are ONLY available to children, aged persons or those on healthcare cards. 
(hearing loss is not considered a disability here) The system for children 
is one I don't like - I am stuck with the government hearing group until 
Alex turns 16. After that I can go to any private hearing centre I want.

And how about the battle to get a simple g-tube
> for Tess?  The horror stories of Luke (England) and Annie (Canada).  Sure
> we have some of this now, especially in managed care situations (HMO's &
> medicaid), but with private insurance I could and did get my daughter an
> aortic valve transplant locally.  Do you really think that under a public
> pay plan, with limited assets to go around to the majority of the country,
> she would still get a valve?

I won't comment on Tess but I think there was more to that than anything to 
do with the system. And with Luke, again I feel that you need to 
differentiate between attitude and the system. It wasn't socialised health 
that said Luke shouldnt be treated it was the doctors, and it wasn't just 
T-18, they did the same to other children with CP and such. I also know that 
the same thing happens in the US.

I certainly could get that sort of treatment here - but I would need to find 
a doctor willing to do it - as I said the primary problem here is attitude 
not the system. The system doesn't limit me its the doctors attitudes that 
do. I have certainly had doctors go way above and beyond the call for Alex - 
all under public health.
Attitudes ARE changing - thanks to the horror stories and advocacy of 
children like Alex and Tess and others. The same doctor who told me that 
they would NEVER operate on a child with T-18 14 years ago recently DID 
operate electively on a trier. The change is slow but it is happening.

> And the 2 years that we spent on HMO's Philina couldn't see any of the
> doctors
> at Children's Hospital.  She fell through the cracks neurologically, 
> because
> the HMO sanctioned neuro evidently didn't bother to read the report from 
> the
> Children's neuro or run any tests of his own, and released her from
> follow-ups.

No system is perfect and I guess all I am trying to say is that it all 
sounds scary, and based on the luxurious system those with private insurance 
have in the US it would really seem scary. But to those who don't have it, 
who can't afford it then ours would seem like a godsend. I lived here in 
Australia before medicare was introduced and it scared the beejeezies out of 
me at the time, we didn't want it. My family had always had private health 
insurance and so did I from the day I started working. But then I watched my 
family almost go down the tubes when my parents had a child with a 
congenital anomaly that required loads of treatment. Private insurance didnt 
cover "pre-existing conditions" which congenital conditions were. (thats 
been changed since).

Up until Alex was born I had never had to use medicare but since I have had 
to it wasn't near as bad as I thought, or as the press led me to believe. 
Certainly I couldn't have continued to pay private health insurance AND the 
massive gaps for someone like Alex even if I was able to work. The problems 
have always been the trisomy diagnosis not the system. Yes we are finding at 
times that hospitals are cutting corners to come in on budget but that I 
believe is a state government issue, not medicare. (I personally believe 
that our state government is near bankruptcy if not already and they wont 
admit it). As a result I am one of the advocates for the federal government 
taking over the hospital system (OK Aussies down, down, we will confuse 
everyone).

The huge difference here is that those that can afford private health are 
encouraged to have private health. If you don't opt to take it voluntarily 
(like Tracey) they get you to pay for medicare through tax. However everyone 
who has a chronic or disabling medical condition, are covered by medicare. 
Its the one guarantee that is nice - no matter who you are, rich or poor you 
can get medical care. And remember things like wheelchairs and equipment are 
not covered by private insurance here either. Also we have a reciprical 
system with some countries meaning that I am covered by their medical 
system.

Its certainly a no frills system, and I guess to Americans it would seem 
very austere. There is no 24 hour a day home nursing, you are limited in 
diapers, kangaroo bags etc within the program etc. But then to some of us 
the American system seems to be full of waste. For example Philina would not 
have gotten an electric wheelchair through the government funded programs 
here, she would have gotten a manual chair and if it didnt need to be 
customised then it may not have been brand new. If you wanted to upgrade to 
an electric chair then you have the option of paying the difference. If 
there came a time when she no longer needed it then it is returned to the 
hospital to be reused for someone else. Even so she would have been entitled 
to a new chair every 4 years, 6 years for an adult.

>> paid well over a million dollars
> for her
> whole series of care.

Doesn't your private insurance have caps?

> To condense that hospital stay (Dec 11th '01 - March 16th '02) will take
> some effort,
> and I may not remember or even have ever known it all.

I do remember that nightmare for you - and I don't think you would blame 
private insurance for the nightmare anymore than I would blame medicare for 
our pacemaker nightmare.

> Admittedly I did pay a couple of hundred dollars deductible on the ptosis
> surgery, but they
> didn't even charge us for our long distance phone calls from her hospital
> room on the cardiac
> surgery from h*ll admit.  They got more from our private insurance then 
> her
> medicaid would have
> paid them, so they just wrote off our deductibles.

Given that I get $100 a week for food, clothing and extras for me to be 
paying those sort of co-pays has to be a calculated and well planned 
decision.

>>Under strictly a public health plan though, I
> suspect that today
> she would either be dead, or sitting in that wheelchair in diapers, with a
> trach, and still being
> tube fed.  Which I suspect would be a living h*ll to an active girl like
> her.

Why? Here the same doctors who would treat Alex privately are the same ones 
who see him publicly and often in the same hospital. Other than St Vincents 
Private I do not know of an Australian hospital that could care for complex 
cases like Alex. The difference for us is that the hospital pays the doctor 
for seeing Alex not me. If I had to depend on private health care for Alex I 
would not have been able to afford to have treated Alex as much as he has 
been. Alex's cost to the government in the first 12 years of his life was 
over $2 million - I have the print outs because I may have to pay them back. 
If it had been private coverage my out of pockets would have been in the 
100's of thousands - and I just don't have that sort of money, nor could I 
earn it, even if I didnt have to care for him.

I have friends who have chronically ill children but who have a really 
decent income and who have private insurance. Their children often see the 
same doctors as Alex, frequently go to the same clinics and such, we talk 
and often share names based on experience. Social health in Australia is not 
second rate health by any stretch of the imagination. Admittedly we don't go 
through the ER as much these days and that seems to be where a lot of our 
problems lay (both within the system and for Alex). That said it was never 
in the ER that Alex was discriminated against it was after that. In the ER 
he was always treated for the presenting problem and the T-18 was ignored. 
It was only when he was to be transferred to a specialist that we hit issues 
with the trisomy and thats attitude not the system. Even so if I knew the 
specialist at the hospital ahead of time I only had to say "so and so is 
Alex's specialist" and he would be transferred under their care. If for some 
reason they weren't there eg on holidays he would be transferred under that 
doctors team.

Karen 

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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