Fred -

Many thanks for keeping me updated on these issues - John Evans has provided
the clearest overview of the card shortfalls by a long chalk!! I very much
appreciate his explanation.....I speak at up to 5 University Hospitals a
month (Sept - July) essentially to the ENB renal course students
(preliminary and advanced) and to groups of Medical students - the issue of
accessing those wishing to donate is frequently a topic of discussion at the
close of my talks and I am grateful for the copy information.

Several local District Councils (here in Hampshire) recently attached
'invitations to become donors' to their electoral paperwork which, by
definition, was then distributed to everyone on their electoral register.
They have now invited me to talk to various groups of councillors and staff
about the issues surrounding donation and transplantation.  It appears that
their positive efforts in this field have precipitated some adverse public
reaction (!!!!!) ....its an uphill struggle but, in my experience so far,
the problems lie not only with getting the donor cards to the people wishing
to carry them, but in clearing up some of the misinformation/ignorance of
what is involved in becoming a donor.

So - one again many thanks Fred (AND John)

Deborah x

Just wondered if anyone saw the Daily Mirror yesterday and the story about
the living related transplant story that goes wrong.  I have already written
and complained.

Claire Stafford

John Evans wrote ......

<<<<<<<<<<<<<<<<<
Legally it is not necessary to involve a possible donor's family regarding
organ/tissue donation (The Human Tissue Act 1961 see
http://www.argonet.co.uk/body/uklaw.html). However as a code of practice UK
health professionals will always seek agreement or lack of objection from a
possible donor's family. When such families know that a dead relative wishes
to be an organ/tissue donor then very few will object (~5%) and many will
volunteer donation - hence the expession "and tell your family and close
friends your wishes regarding donation." It is only when the family don't
know that the refusal rate approaches ~ 45%!
>>>>>>>>>>>>>>>>>>>>>>>

As a matter of interest anyone know why it was decided that the carriage of
a signed donor card is not evidence enough of the wishes of the deceased or
that the wish of the deceased to be an organ donor is not sufficient?

Snip

Fred

would like to clarify one or two points.
Legally it is not necessary to involve a possible donor's family regarding
organ/tissue donation (The Human Tissue Act 1961 see http://www.argonet
co.uk/body/uklaw.html). However as a code of practice UK health professionals
will always seek agreement or lack of objection from a possible donor's family.
When such families know that a dead relative wishes to be an organ/tissue donor
then very few will object (~5%) and many will volunteer donation - hence the
expession "and tell your family and close friends your wishes regarding
donation." It is only when the family don't know that the refusal rate
approaches ~ 45%!
Presently already there are 10 million (17%) of the UK population registered on
the NHS Organ Donor Register since Oct 1994 and about 30% population have a
donor card. Whilst there are some people who say one thing and do another,
another
reason the potential donation figures aren't higher is lack of convenient
availability of donor cards and registration forms. However you can now
register on-line at http://www.nhsorgandonor.net and print out your own donor
card!
From the experience of other countries changing the law to increase organ
donation usually results in a lower number of donations. In the UK there are
many other factors (resources, training, 'criminal assault' law, medical
ethics, public/medical awareness and understanding) that need to be addressed
which would result in more donor referrals.
Regards
John Evans

Len Coe wrote....

> Hi Fred,
>
> As I see it, at the moment in this country the donors family have to agree
> to the organs being used for transplantation, the Doctors can't take the
> organs without their permission, the Card is only on object that expresses
> the wishes of the donor, If they were as legal as a will then the
relatives
> permission wouldn't be needed.

Thanks for the clarification.

> I have been on dialysis for over six years, I've had Cancer (13 years ago)
> and have other health problems. I have been told that I will not get a
> transplant, because they think it "may" kill me. I know that without a
> transplant I will die anyway, could be quite soon, I have to rely on a
> permacath because I can't have another fistula. Permacaths are supposed to
> be temporary access for up to a couple of months, sometimes slightly
longer.
> I have had several and the last one I had for three years, the present one
I
> will have had for a year at Christmas, It took five weeks and seven
attempts
> to get it in, if I get an infection in this one there is no guarantee that
I
> will get another one. In my case it isn't the shortage of organs that is
the
> problem, it is the shortage of good transplant surgeons that's stopping me
> from having one.
>
> Cheers,
> Len.
> UK

You have my smpathy.

Fred

Hi Fred,

As I see it, at the moment in this country the donors family have to agree
to the organs being used for transplantation, the Doctors can't take the
organs without their permission, the Card is only on object that expresses
the wishes of the donor, If they were as legal as a will then the relatives
permission wouldn't be needed.

I have been on dialysis for over six years, I've had Cancer (13 years ago)
and have other health problems. I have been told that I will not get a
transplant, because they think it "may" kill me. I know that without a
transplant I will die anyway, could be quite soon, I have to rely on a
permacath because I can't have another fistula. Permacaths are supposed to
be temporary access for up to a couple of months, sometimes slightly longer.
I have had several and the last one I had for three years, the present one I
will have had for a year at Christmas, It took five weeks and seven attempts
to get it in, if I get an infection in this one there is no guarantee that I
will get another one. In my case it isn't the shortage of organs that is the
problem, it is the shortage of good transplant surgeons that's stopping me
from having one.

Cheers,
Len.
UK


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-----Original Message-----
From: Reid, Fred [mailto:afr1@...]
Sent: 15 October 2000 10:59
To: BODY-UK@egroups.com
Subject: Re: [BODY-UK] Public Opinion


Thanks Tracy and Len for the replies. I wanted to see what replies I got
before giving my thoughts on the issue. I fear that Tracy put the state of
affairs mildly. I reckon that the opinion poles are just plain wrong, I
reckon that people only really give an honest answer to whether they would
want their organs to be used by actually getting an organ donor card, and
that when asked in opinion poles alot of people just say yes (rather than no
or not sure) so as not to look selfish (or whatever) or admitt it to
themselves.

Len wrote
<<<<<<<<<<<<<<<
It doesn't matter If everyone carried a card, while the law allows their
next of kin to revoke it, plenty of organs will be lost.

We should be fighting for the Opt-out clause and get rid of the opt-in
clause.
>>>>>>>>>>>>>>>>

Well we could go further than that.

Considering life saving transplants only, not allowing usable organs to be
transplanted means leaving those who would have otherwise received those
organs at risk of dieing from their conditions, in fact given the shortage
of organs some of those people will die. Therefore not allowing
transplantation is in effect killing people yet this is considered lawfull.
Discuss ......

Fred

P.S. Legal question: If someone carries a donor card, unfortunatly dies but
the relatives object to transplantation, is there a legal obligation for
their wishes to be followed? Rather than just that the hospital has the
discretion to follow the relatives wishes rather than the wishes of the
deceased.




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Thanks Tracy and Len for the replies. I wanted to see what replies I got
before giving my thoughts on the issue. I fear that Tracy put the state of
affairs mildly. I reckon that the opinion poles are just plain wrong, I
reckon that people only really give an honest answer to whether they would
want their organs to be used by actually getting an organ donor card, and
that when asked in opinion poles alot of people just say yes (rather than no
or not sure) so as not to look selfish (or whatever) or admitt it to
themselves.

Len wrote
<<<<<<<<<<<<<<<
It doesn't matter If everyone carried a card, while the law allows their
next of kin to revoke it, plenty of organs will be lost.

We should be fighting for the Opt-out clause and get rid of the opt-in
clause.
>>>>>>>>>>>>>>>>

Well we could go further than that.

Considering life saving transplants only, not allowing usable organs to be
transplanted means leaving those who would have otherwise received those
organs at risk of dieing from their conditions, in fact given the shortage
of organs some of those people will die. Therefore not allowing
transplantation is in effect killing people yet this is considered lawfull.
Discuss ......

Fred

P.S. Legal question: If someone carries a donor card, unfortunatly dies but
the relatives object to transplantation, is there a legal obligation for
their wishes to be followed? Rather than just that the hospital has the
discretion to follow the relatives wishes rather than the wishes of the
deceased.

Hello Fred
Good question! One that continues to tax all involved in organ donation. In
national sureveys around the world the majority of surveys have reported
about 75-92% support for organ donation, but these figures are not
reflected in the number of cards carried or the number on the register.
Saying what you would do and doing it are very different things it appears.
Suggestins for this include:
It is socially desirable to say yes to organ donation, but when actually
signing for a card you have to deal with all the questions this decision
raises.
Many people think about organ donation for the length of time it takes them
to answer the survey and then it is something they are always going to get
round to doing.
People have questions about the donation process to which they get mixed
answers and again delay in completing the card.
People talk and change their mind.


Sureveys are always problomatic when trying to provide answers as many
times the questions are black and white.
Many people  use shades of grey in their decision making. so the question
"do you support organ donation?" may be answered yes, but if you then asked
"would you be a donor?" the answer may be  'well I might if I felt
confident that the following questions were answered. So surveys are not
all that helpful because they tend to measure 'intention' rather than
'deed', and we all know how good we are at 'meaning' to do things.

Sorry that was a bit long winded
Tracy


At 10:49 10/10/00 +0100, you wrote:
>
>HI Fred,
>
>I would think the difference is that when asked about such issues they then
>have to think about it to give an answer.
>At other times they tend to put it out of their minds so they don't think
>about filling a donor card in.
>
>
>It doesn't matter If everyone carried a card, while the law allows their
>next of kin to revoke it, plenty of organs will be lost.
>
>We should be fighting for the Opt-out clause and get rid of the opt-in
>clause.
>
>         "from a person deeding a transplant who knows he isn't
>          going to get it in this country, where Doctors play GOD"
>
>Cheers,
>Len.
>UK
>
>
>http://egroups.com/group/TortoiseWorld
>The friendly List for all Tortoises keepers.
>
>http://egroups.com/group/ReptileCare
>The friendly list for all Reptile keepers.
>
>
>-----Original Message-----
>From: Reid, Fred [mailto:afr1@...]
>Sent: 08 October 2000 17:28
>To: BODY-UK
>Subject: [BODY-UK] Public Opinion
>
>
>Hi everybody,
>
>I've just joined this list partly because I am generally interested in the
>issues surrounding organ donation and transplantation and partly because of
>a particular question. Public opinion surveys on whether people would want
>their organs to be used for transplantation after their death generally get
>a much greater proportion of people saying yes than actually carry organ
>donor cards. I would be very interested to hear how other people would
>explain the difference.
>
>Fred
>
>
>
>
>Community email addresses:  Post message: BODY-UK@onelist.com  Subscribe:
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>List owner:   BODY-UK-owner@... URL to this page:
>http://www.onelist.com/community/BODY-UK
>
>
>
>
>
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>
>
>

Tracy Long
Research Fellow
European Institute of Health and Medical Sciences
Duke of Kent Building
University of Surrey
Guildford
GU2 7TE

HI Fred,

I would think the difference is that when asked about such issues they then
have to think about it to give an answer.
At other times they tend to put it out of their minds so they don't think
about filling a donor card in.


It doesn't matter If everyone carried a card, while the law allows their
next of kin to revoke it, plenty of organs will be lost.

We should be fighting for the Opt-out clause and get rid of the opt-in
clause.

          "from a person deeding a transplant who knows he isn't
           going to get it in this country, where Doctors play GOD"

Cheers,
Len.
UK


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The friendly list for all Reptile keepers.


-----Original Message-----
From: Reid, Fred [mailto:afr1@...]
Sent: 08 October 2000 17:28
To: BODY-UK
Subject: [BODY-UK] Public Opinion


Hi everybody,

I've just joined this list partly because I am generally interested in the
issues surrounding organ donation and transplantation and partly because of
a particular question. Public opinion surveys on whether people would want
their organs to be used for transplantation after their death generally get
a much greater proportion of people saying yes than actually carry organ
donor cards. I would be very interested to hear how other people would
explain the difference.

Fred




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Hi everybody,

I've just joined this list partly because I am generally interested in the
issues surrounding organ donation and transplantation and partly because of
a particular question. Public opinion surveys on whether people would want
their organs to be used for transplantation after their death generally get
a much greater proportion of people saying yes than actually carry organ
donor cards. I would be very interested to hear how other people would
explain the difference.

Fred

Originally the Email Group was hosted by Onelist. They merged with eGroups who
in turn set up an European section. Therefore the revised category and
addresses are:
Category: Top : Regional : Europe : United Kingdom : Health : Education
Addresses:
Post message: BODY-UK@...
Subscribe: BODY-UK-subscribe@...
Unsubscribe: BODY-UK-unsubscribe@...
List owner: BODY-UK-owner@...
URL to main page: http://www.egroups.co.uk/group/BODY-UK

However a further development is that eGroups has been acquired by Yahoo; see:
http://www.egroups.com/local/news.html
http://www.egroups.com/local/pr/pr062800.html
http://www.egroups.com/local/pr/pr083100.html

As yet there are no changes. Previous addresses should still work.

BODY AGM

This year's BODY Convention is on next Saturday and Sunday. After the business
part of the AGM we have an Open Discussion session. Are there any concerns or
comments you would like to be considered. If yes, please post to this Group or
body@... by Thursday night.

Thank you
John Evans

Me and my fiance and are living related transplant patients - we are getting
married next June - do you know of anyone else who married a transplant
patient or a similar story?  Would love to hear if you do :-)

Thanks.

Miss Claire Ann Stafford
www.transplantfriends.co.uk
www.weddingservices4u.co.uk

Len,
If you are a dialysis patient, then your KPA should be able to give the NKF
your name and address so you do get Kidney Life (their quarterly magazine).
If not, why not get in touch with the NKF (nkf@...) and they
should be able to send you it directly (though it's possible they'll require
you to become a 'Friend of the NKF' of which there are full details on the
NKF web site).

Richard Okell
www.kidney.org.uk/
webmaster@...

~~~~~~~~~~~~~~~~~~~~
Carry an Organ Donor Card - for details in the UK see
www.kidney.org.uk/donor.html
----- Original Message -----
From: Len Coe <len@...>
To: <BODY-UK@egroups.com>
Sent: 05 June 2000 04:33
Subject: Re: [BODY-UK] Transplant World morally bankrupt?


> Hi! John,
>
> I'm afraid were not *Informed* about a lot of things, sometimes things
> are put on a notice board and that seems to be all that happens,
> but I don't remember seeing one about the service at Guildford Cathedral,
> and I don't receive the NKF newsletter either. But as I said I wouldn't
have
> been able to go because It was on one of my dialysis days.
>
> My own personal opinion is that the only way forward is to push for the
> OPT-OUT clause,
> and no intervention by surviving relatives. As it stands at the moment It
> doesn't matter
> if everyone in the country carried a donor card, If the next of kin says
no
> then the organs can't be used.
>
> Nice to speak to you,
>
> Len.
>
>
>
>
> At 12:03 07/06/00 +0100, you wrote:
> >Thank you Tracy and Len for your inputs.
> >
> >In answer to your comment Len I am sorry to read you are on dialysis. One
aim
> >of the Guildford Cathedral Service was to increase public awareness to
the
> need
> >for organ donors. We did achieve that in some degree.
> >
> >Regarding not knowing about the event gives credence to the Subject
title.
> >The following were given advanced information:
> >All Transplant Co-ordinators, all Accident and Emergency and donor
referring
> >Intensive Care Units, all National Kidney Federation (NKF) KPA
> representatives;
> >there was an advert in the NKF Newsletter (15.000 distribution) and I
sent
> >emails requesting support from 8 nearish KPAs, none of which responded!.
Some
> >200 Hospices were also circulated to involve their cornea donor families.
> >
> >I (you?) may wonder why you were not informed in one way or another!!
> >
> >John Evans
> >
> >
> >
> >
> >------------------------------------------------------------------------
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Guildford Cathedral Service.

male in good health never smoke never drink if is
possible to donate a kidney in exchange for some help
for my family 25 years tipe "o" positive and really
for donate


[Moderators comment - Thank you, but your offer is illegal in the UK
and most other countries in the World. In the UK presently only
living people known to the person needing a transplant can be
considered as potential living donors]
__________________________________________________
Do You Yahoo!?
Yahoo! Photos -- now, 100 FREE prints!
http://photos.yahoo.com

Hi John,

Usually when somebody makes a will it is because they have recognized and
accepted
the fact that someday they are going to die,and they have though about what
they
  want to do with there material posesions ,and who they would like to have
them.
Similarly If someone has taken the time to study about donation, and they
want there organs
if possible to benefit some one el's who really needs them who has the
right to countermand that request.
My opinion is no-one, a dying wish should be honored. It shouldn't be up to
someone el's to rebuke it.
I am not saying this just because I need a transplant, because the Dr's at
Adenbrooks don't want to give me one,
and I am probably not likely to get one if they have there way, But Most
sudden deaths involve a postmortem, and all those organs are then just
pushed back into the body and buried or incinerated but for what good
reason!!  Nothing !!




At 09:29 08/06/00 +0100, you wrote:
>Thank you Len,
>
>Just for the record and because we were grateful for their support the
>Guildford Service was also promoted on the National Kidney Federation and the
>Addenbrooke's Transplant Unit websites as well as the BODY website.
>
>Now who is going to comment on bereaved families not having a say in what
>happens when a member of their family dies? What and where is the evidence
that
>this will make any difference to organ donation, anyway?
>
>John E
>
>
>
>
>------------------------------------------------------------------------
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On Wed  7 Jun 2000 (13:14:19 +0100), claire.stafford@... wrote:
>I could not attend due to family commitments, however my unit did not
>have
>any posters up when I went for my appointment.  I gave them one of your
>posters and I put a few up, but this was under my own steam.  Why was
>the
>promotion ignored by some units etc?
>
>I think this is very poor of them.

Thank you Claire for your support. Naturally there would be many who couldn't
attend because of other commitments.

We sent 10 Flyers (A5 posters) to all Transplant Co-ordinator Groups and we
relied on them to promote within their Transplant Units. Two Co-ordinators
contacted BODY, one saying they were circulating the Flyers to donor families,
and asking for more.

John E

Thank you Len,

Just for the record and because we were grateful for their support the
Guildford Service was also promoted on the National Kidney Federation and the
Addenbrooke's Transplant Unit websites as well as the BODY website.

Now who is going to comment on bereaved families not having a say in what
happens when a member of their family dies? What and where is the evidence that
this will make any difference to organ donation, anyway?

John E

Hi! John,

I'm afraid were not *Informed* about a lot of things, sometimes things
are put on a notice board and that seems to be all that happens,
but I don't remember seeing one about the service at Guildford Cathedral,
and I don't receive the NKF newsletter either. But as I said I wouldn't have
been able to go because It was on one of my dialysis days.

My own personal opinion is that the only way forward is to push for the
OPT-OUT clause,
and no intervention by surviving relatives. As it stands at the moment It
doesn't matter
if everyone in the country carried a donor card, If the next of kin says no
then the organs can't be used.

Nice to speak to you,

Len.




At 12:03 07/06/00 +0100, you wrote:
>Thank you Tracy and Len for your inputs.
>
>In answer to your comment Len I am sorry to read you are on dialysis. One aim
>of the Guildford Cathedral Service was to increase public awareness to the
need
>for organ donors. We did achieve that in some degree.
>
>Regarding not knowing about the event gives credence to the Subject title.
>The following were given advanced information:
>All Transplant Co-ordinators, all Accident and Emergency and donor referring
>Intensive Care Units, all National Kidney Federation (NKF) KPA
representatives;
>there was an advert in the NKF Newsletter (15.000 distribution) and I sent
>emails requesting support from 8 nearish KPAs, none of which responded!. Some
>200 Hospices were also circulated to involve their cornea donor families.
>
>I (you?) may wonder why you were not informed in one way or another!!
>
>John Evans
>
>
>
>
>------------------------------------------------------------------------
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>

I could not attend due to family commitments, however my unit did not have
any posters up when I went for my appointment.  I gave them one of your
posters and I put a few up, but this was under my own steam.  Why was the
promotion ignored by some units etc?

I think this is very poor of them.

Claire Stafford
Living Related Transplant October 1998
www.transplantfriends.co.uk

Thank you Tracy and Len for your inputs.

In answer to your comment Len I am sorry to read you are on dialysis. One aim
of the Guildford Cathedral Service was to increase public awareness to the need
for organ donors. We did achieve that in some degree.

Regarding not knowing about the event gives credence to the Subject title.
The following were given advanced information:
All Transplant Co-ordinators, all Accident and Emergency and donor referring
Intensive Care Units, all National Kidney Federation (NKF) KPA representatives;
there was an advert in the NKF Newsletter (15.000 distribution) and I sent
emails requesting support from 8 nearish KPAs, none of which responded!. Some
200 Hospices were also circulated to involve their cornea donor families.

I (you?) may wonder why you were not informed in one way or another!!

John Evans

Hi!,

This is the first I have heard about the event, although I wouldn't have been
able to attend as I was on dialysis, but the publicity for this event never
reached me,
maybe there were other people who would have attended but also didn't know
about it.

Len Coe.         Renal patient Norwich.




At 12:25 06/06/00 +0100, you wrote:
>
>Dear John and Margaret
>I am sure it won't ease the disopointment of the low numbers attending the
>service on Sat, but it was a wonderful event. We can only hope that the
>amount of publicity it recieved will mean that the next service will be
>better attended. I hope it will grow year on year. Maybe now that there has
>been some National coverage things will change.
>Well done
>Tracy Long
>
>
>At 11:51 06/06/00 +0100, you wrote:
>>Guildford Cathedral Service.
>>
>>The weather was fine, the Cathedral Staff were friendly and supportive and
>>according to many comments the Service was excellent. We even had an
>>enthusiastic group of Bell Ringers to ring in the congregation.
>>
>>The purpose was to acknowledge donors, to say "thank you" to donor
>families, to
>>say thank you for my transplant and to increase public awareness to the need
>>for organ and tissue donors.
>>
>>>From the 20,000 invitations that went out about 100 people attended.
What do
>>you think this says to the media who supported the event very well
>(Carlton and
>>Meridian TV and many news papers)??
>>
>>4 organising members of this Group were present. Did anybody else attend?
>>
>>Your comments are welcomed before BODY drastically changes direction.
>>
>>
>>
>>
>>
>>
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>Tracy Long
>EIHMS
>UNIS
>
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Dear John and Margaret
I am sure it won't ease the disopointment of the low numbers attending the
service on Sat, but it was a wonderful event. We can only hope that the
amount of publicity it recieved will mean that the next service will be
better attended. I hope it will grow year on year. Maybe now that there has
been some National coverage things will change.
Well done
Tracy Long


At 11:51 06/06/00 +0100, you wrote:
>Guildford Cathedral Service.
>
>The weather was fine, the Cathedral Staff were friendly and supportive and
>according to many comments the Service was excellent. We even had an
>enthusiastic group of Bell Ringers to ring in the congregation.
>
>The purpose was to acknowledge donors, to say "thank you" to donor
families, to
>say thank you for my transplant and to increase public awareness to the need
>for organ and tissue donors.
>
>>From the 20,000 invitations that went out about 100 people attended. What do
>you think this says to the media who supported the event very well
(Carlton and
>Meridian TV and many news papers)??
>
>4 organising members of this Group were present. Did anybody else attend?
>
>Your comments are welcomed before BODY drastically changes direction.
>
>
>
>
>
>
>------------------------------------------------------------------------
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>Send money through email!
>Sign up for PayPal today.
>http://click.egroups.com/1/5027/8/_/677993/_/960289549/
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Tracy Long
EIHMS
UNIS

Guildford Cathedral Service.

The weather was fine, the Cathedral Staff were friendly and supportive and
according to many comments the Service was excellent. We even had an
enthusiastic group of Bell Ringers to ring in the congregation.

The purpose was to acknowledge donors, to say "thank you" to donor families, to
say thank you for my transplant and to increase public awareness to the need
for organ and tissue donors.

From the 20,000 invitations that went out about 100 people attended. What do
you think this says to the media who supported the event very well (Carlton and
Meridian TV and many news papers)??

4 organising members of this Group were present. Did anybody else attend?

Your comments are welcomed before BODY drastically changes direction.

TeachNet has now launched at http://www.pupilnet.net/teachnet/

Its forum based discussion groups designed specifically for schools
in the UK.  Its free and access is only granted to staff and teachers
within the UK Education Sector.

David

OK, we have the British Transplant Games, National Transplant Week and
hopefully a National Transplant Service. We need other media interest events
throughout the year to maintain or increase public awareness to the need for
organ and tissue donors.

Any ideas welcomed. It doesn't matter how crazy the ideas are; it's quite often
these that 'spark' new initiatives.

John Evans

ODY is launching a new event - an annual national Transplant Service that will
be at a different Cathedral every year. Charities will be able to promote their
society and services during the Gathering before and after the Service. It is
eventually intended to hold this event in Spring or Autumn. This will give
another media opportunity to promote the need for organ and tissue donors other
than the only other two events in July.
However the first one 'Millennium Commemorative and Thanksgiving Transplant
Service' is on Saturday 3rd June, 12.00-1.00 at Guildford Cathedral.
Please support this event by encouraging those involved (families and
professionals) you know to attend. Hopefully you can come yourself and perhaps
you know of a Charity that would like to promote itself and support the event.
There is more information on www.argonet.co.uk/body/mctts.html
Thank you
John Evans

Strange with so much news recently how quiet the BODY-UK group is!! Because of
the extra work load I haven't been able to 'gee' things along.

It started with the person who won the Lottery and would swap it (wishfully)
for a kidney transplant. The Government released their findings on Conditional
Donation (Law has higher priority than saving life!). It was also announced
that the UKTSSA (UK Transplant Support Service Authority) would be reorganized
and renamed. This was followed by the BMA (British Medical Association)
highlighting their pursuance of Opt Out. Then the RCN (Royal College of
Nursing) debated Opt Out and rejected the idea. Concurrent with this were three
transplant stories, Sally Newcastle (heart transplant), baby Tace in Cardiff
(died waiting heart tx) and a boy in Edinburgh (liver transplant).

Do you have any comments or other stories to add to the list??

John Evans

would like to suggest to your attention the
Mutual Organ Donation Society that I proposed to create
awhile ago.  I would love to know your opinions;
I hope it could help resolve the issues with lack
of organs for transplantation.
See http://www.lucifer.com/~sasha/articles/OrganDonation.html
-----------------------------------------------------------
Sasha Chislenko   <http://www.lucifer.com/~sasha/home.html>
From: Sasha Chislenko <sasha1@...>

[MODERATORS NOTE:
  There is plenty opportunity to 'get your teeth' into this one!]

i! my Name is Len Coe and I am a dialysis patient Dialysing four
time a week for four hours each time. Do you think some of you could
introduce yourselves to me and tell me about yourselves.I am having
quite a few problems, most of them caused by the people who are
supposed to treat us for our ilnesses,
Cheers
Len
From: "len coe" <len@...>

[Moderators Note: Thank you Len for BODY-UK's first contribution. I hope
others with experience will repond to your question. By way of advanced
information I am told the Kilroy programme (Tues 9.00 BBC1 TV) should be
on Presumed Consent Opt Out. This is prior to a Private Members Bill in
the House of Commons to introduce an Opt Out law.]

UK transplant and donor situation at 31 December 1999. Provisional information
provided by UK Transplant Support Service Authority (UKTSSA):

Transplant Total Waiting List   = 6676
Number dead donor Transplants   = 2406
Number living donor Transplants =  305
Number of dead organ donors     =  746

Many more patients, not on the waiting list, could benefit from a transplant.
Many thousand patients die waiting and not registered.

Note the UKTSSA is being absorbed into a new organisation to be called
UK Transplant (UKT).

Suggestions and problems (in random order):

Lack of resources (equipment, staff, training, financial reimbursements) and
lack of awareness and understanding in hospitals (Accident and Emergency,
Intensive Care Units, Operating Theatres).

Conditional donations to be banned totally. This is irrespective of differing
Cultural conventions or acceptable preferences. It could be said that the Race
Relations Act has a higher priority than the saving of human life in the
National Health Service. Is this contrary to most Religions basic principle
that saving human life should always be given the highest priority?
(BODY believes that all donations should be voluntarily unconditional.)

The Human Tissue Act 1961 should be changed in favour of Presumed Consent Opt
Out. Current evidence seems to indicate this would make no difference or even
worsen the present donor situation. (BODY supports the 1961 Act.)

The Offences against the Persons Act 1861 (Criminal Assault clause) inhibits
many possible organ donations. Possible donor patients cannot be treated solely
for the purpose of organ donation in Intensive Care Units.

Living person kidney donations are 16% of total kidney transplants. This
compares to USA >20% and Norway approaching 40%. Anonymous, voluntary living
person donations are not presently considered.

There could be a much greater number of tissue donations. Since there is 400
times as many potential tissue donors compared to organ donors it could be a
daily occurrence in every UK Hospitals. This would greatly increase hospital
staff awareness via tissue donation to organ donation.

Xenotransplantation (specifically organs from pigs) proceeding cautiously.
First transplants to humans within 5 years, possibly 2 years.

Please suggest other aspects for debate.

It would greatly help members if you keep your contributions to the Subject
heading given. If you wish to expand a Subject please start a new Subject
heading.

Thank you
John Evans
BODY-UK Owner/Moderator