Levenax wrote:
Probably the simplest way to sort this difficult problem is to tell people that they won't get a donor organ if they fall ill if they haven't signed up to the organ donation scheme. It would be a bit like breakdown insurance on your car; pay the premium i.e. sign up as a donor, and get the insurance after a suitable latent period i.e. an organ if and when you need one.
It would probably take a few deaths of lazy or stupid types before the message sank home to the great unwashed but IMO such a scheme would have a fair chance of success.

I would probably have worded that post differently but I agree.
i do not think it is fair if a person will not sign up to allow the use of their organs and then expect to get one if they fall ill.

I have and would again use that issue in a campaign to get people to sign up.

DoricMan wrote:
Having posted the original post, I must declare where I am coming from.
There are two events in my life, the first my wife's younger sister with terminal kidney failure, and no donor.
The next is one of my fishing pals, he suffered kidney failure but was able to exist, albeit in a highly restricted environment. A donor organ was found and he returned to full health in an amazingly short time. He returned to work and was a regular member or our angling club.
I understand the doubts and deeply held concerns, that have been expressed above, but ways must be found to help overcome some, and perhaps the majority, of these difficulties.
We need to come to terms with this important public health issue, and how to increase organ donation.

I wondered when I read the post.
This must be a very important issue in your family and I agree, some solution must be found and quickly. I hope your wife's sister gets a transplant soon.

I wonder if you read my previous post and the suggestions we made for increasing the number on the register without losing the support of the public.

Dr Simpson MSP is the man putting pressure on Nicola Sturgeon to increase capability within the NHS to do more transplants, i believe she will try to do that soon, as that is the only way more transplants will be done at this time. I wonder if you listened to that debate. If you want to send a message to me with your own e-mail I will send you a copy of some of the correspondence which outlines the suggestions made to increase the donor register.

Our organisation is very much concerned with making sure that authorisation is fair and open but I can promise you we put as much work into trying to find ways to increase the transplants in Scotland.

Clare wrote:
LYDIA REID wrote:
Clare wrote:
I didn't realise the refusal rate (on the part of relatives after a registered donor has died) was as high as 40%. When you think about it that's massive! Nicola Sturgeon is saying the "key" is for people to tell their relatives when they register. I think the real key is for the wishes of these people to be respected by their relatives and I think that is the first angle this should be viewed from. Imagine the difference it would make if those refusals weren't permitted, if a person's wishes couldn't be overturned by relatives after their death. Surely donors who register are essentially making a decision along the lines of making a will almost and so legally their wishes should be paramount and legally irrevocable?

I am more and more drawn to the idea of properly promoting organ donation Martin, really. Nothing is unclear then but is straightforward.

My previous post possibly included one scenario that won't arise but I'm not sure. I've realised the "presumed consent" proposal will almost certainly only include adults and not children, yes? Maybe someone could clarify.

I think tho that the scenarios I've referred to would still arise involving relatives in a "presumed consent" situation and that the distress there would be much greater than where relatives of a registered donor over-rule the deceased wishes. How bizarre would it be if we went from a situation whereby relatives of a registered donor were able to stop that process to a position where the relatives of somene whose wishes weren't known were unable to stop their organs being taken?

I know they are saying we can opt out but ultimately I can't get away from the fact that our bodies don't belong to the State and the whole "presumed consent" thing has a ring to it which disturbs me.

We have to change the way we persuade people to become donors and promote it everywhere. GPs could kick that off by asking every patient they see, dentists too, opticians: donor cards should be available everywhere. everywhere. We must go that route but first let's get rid of the clause whereby relatives can overturn a person's wishes. That would be a very good start given the high percentage of cases where that happens. I was thinking it would be maybe around 7-10 per cent, but 40% is a huge amount, its almost half. We need to address that.

Claire we fought for the right of the personal decision and it is something that I truly believe in. Realistically though when you are in the situation where it is your loved one dead or rather someone is telling you they cannot be saved. It is usually the result of two main scenarios. It may all be a terrible shock and the person has had a heart attack or knocked down, No time to say goodbye and along comes this person who is asking that they be put onto a machine which will keep organs working while they are removed, before your loved one is in your eyes properly dead. it is a leap of faith in the person who is telling you that your loved one is dead but not really dead. Your brain does not work as it normally would, your only feeling is to protect the body as this is all you have left of this much loved person. Perhaps best explained by the fact that some people want to put warm things onto their loved ones when they are buried it is completely illogical but that is grief and how it effects some people. If your relative has gone through a long illness and you have feelings along the lines of what if they could be saved or just not properly dead. You may feel they have had enough now just leave them in peace to die in dignity. You may also feel a terrible horror at the thought that a scalpel is to open the body of this person before you have a chance to get used to the idea of the death of this much loved person.

Lydia, the point I'm making is that if a person makes a decision about the matter for themselves and registers as a donor their family should simply not be allowed to overturn that decision. Families should not be asked for their approval, the person has already made the decision. Grief doesn't come into the matter, the decision has been made already, and surely they should wish to honour that person's wishes? The issues surrounding this problem would best be dealt with if as I have suggested the registration process includes that person's decision being final and barring relatives from changing it at a later date.

As the law stands in the new bill technically the relative cannot change that decision. The law says that the person has carried a card or signed the register and according to law then the decision is final. I believe that is how it should be. The biggest problem I see is not enough education. In years to come it will change as we now have packs in upper levels of Schools which are designed to encourage a discussion in class. This we hope to extend to video's and other teaching aids with the hope that it will cover more than one or two lessons.

Our hope is that with discussion it will become more normal, the feeling of disgust will not exist. We hope that as with all discussion this subject will become a standard discussion at home and with mates so that generations to come will believe it is standard practice.

It is though unlikely we will ever lose the feeling that effects a relative when they cannot bring themselves to allow that scalpel to touch their loved one. It is a very brave decision for a relative to allow the body of the person they love to be cut and part of their body to be removed. We have a saying and that is an organ is a gift of life and you cannot take a gift.

Keeping the profile high for organ donation is as important or possibly more important than getting names on a register.

Doctors are aware that negative publicity does not do the profile any good.

I don't know if you saw the terrible publicity recently over the mum who sat at her daughters side as she died only to discover that although her daughter had her name on the register, and her mother was dying while waiting on a kidney, and her mother was a perfect match, the mother could not receive the kidney, as their were other donors on the list above her and the organs were given to them. It was heartbreaking but unfortunately the law must be adhered to in these situations.

We have also made suggestions such as walls round cemeteries could be covered with plaques holding the names of people who have donated organs or people who have given permission for a post mortem which will help research or teaching. We believe this small measure could make huge changes to attitude. Only the brave can have their name on this wall.

LYDIA REID wrote:
We have also made suggestions such as walls round cemeteries could be covered with plaques holding the names of people who have donated organs or people who have given permission for a post mortem which will help research or teaching. We believe this small measure could make huge changes to attitude. Only the brave can have their name on this wall.

A few years ago one of my work colleague died suddenly from a stroke. She was a lovely person and aged only about fifty. We were all very upset by her death but when we heard her minister tell the packed congregation at her funeral that many of her organs had been used to help others it was a most uplifting moment that brightened what was an otherwise black day. Your idea for plaques sounds like an excellent one and I wish you well with it.

Levenax wrote:
LYDIA REID wrote:
We have also made suggestions such as walls round cemeteries could be covered with plaques holding the names of people who have donated organs or people who have given permission for a post mortem which will help research or teaching. We believe this small measure could make huge changes to attitude. Only the brave can have their name on this wall.

A few years ago one of my work colleague died suddenly from a stroke. She was a lovely person and aged only about fifty. We were all very upset by her death but when we heard her minister tell the packed congregation at her funeral that many of her organs had been used to help others it was a most uplifting moment that brightened what was an otherwise black day. Your idea for plaques sounds like an excellent one and I wish you well with it.

Thanks levenax,

I find the powers that be look on measures such as these as petty and stupid; they don't have the close contact with families that we do and don't seem to see how a family or person will react to this idea of posterity.

The idea of a family member on the wall or your own name on that wall particularly in the beginning when the publicity level is high, could make the difference between saying yes and no. I feel a special corner could be kept for children. One of the bravest decisions for a parent is to allow a post mortem on their child or for the organs of an older child to be used for transplant.

This attitude won't stop us trying to bring this about.

Lydia
I'm kind of losing the topic here through your posts as a lot of information from you is about policies you are working towards via groups you are involved with. You keep saying "we" and its confusing me. I also am unsure about parents "allowing" a PM to be done. I thought if there were grounds to conduct a PM then the medical authorities had to do it to establish the facts.

On the "presumed consent" issue I'm going with information provided elsewhere and one statistic quoted by Nicola Sturgeon states that 40% of families refuse to give the go ahead for organs to be removed.

The whole "presumed consent" thing is being buried under all of that. I am all for donation of course but I'm now sure I'm against "presumed consent" completely.

'Dead' patient comes around as organs are about to be removed[img size=150][/img]





tinyurl.com/6qcdk7

Good grief Scunny!

A useful link:

www.eubios.info/NBB/NBBOT.htm

Scunnert posted: 'Dead' patient comes around as organs are about to be removed
That is why I am against presumed consent. I think we're on dangerous ground even considering it until absolute death can be declared without error.

Clare wrote:
Lydia
I'm kind of losing the topic here through your posts as a lot of information from you is about policies you are working towards via groups you are involved with. You keep saying "we" and its confusing me. I also am unsure about parents "allowing" a PM to be done. I thought if there were grounds to conduct a PM then the medical authorities had to do it to establish the facts.

On the "presumed consent" issue I'm going with information provided elsewhere and one statistic quoted by Nicola Sturgeon states that 40% of families refuse to give the go ahead for organs to be removed.

The whole "presumed consent" thing is being buried under all of that. I am all for donation of course but I'm now sure I'm against "presumed consent" completely.

Hi Claire,

Although this thread would seem to be finished, I wanted to answer this now I have time. I am sorry if I confused you I do blether on.

There are two types of post mortems.

1. Hospital post mortem, which can be authorised by the patient before or after death. It can be authorised by a relative after death both methods apply to organ donation for transplant.
The patient being any person over the age of twelve.
This can be a written authorisation or (our objection) a verbal authorisation.
A verbal authorisation needs only a member of NHS staff to say the person said yes.
The member of staff then fills in a form, which states the person told them they wanted a post mortem after death.
This is applicable for organ donation for transplant.
This authorisation in our view, could, from a member of staff with no morals or honesty, be taken from a person in a deep coma for instance. No proof needed.
This verbal authorisation can be taken from a child of twelve or over without including the presence or authorisation from a parent. This would only be useful if the child had an unusual or terminal illness.
Although the law states a relative cannot veto written or verbal authorisation from the person, in practice doctors do not want the adverse publicity of a relative storming away to the media so in practice if the relative objects the procedure does not take place.

2. The second type of post mortem is one in which relatives have no say. A doctor if they believe foul play has occurred or the police can approach the Procurators Fiscal and ask the Procurators Fiscal to carry out the post mortem.

This is done automatically if for instance a person is involved in a death at home or at work. If it is possible, they may have contracted a transmittable disease.

In practice if a person dies in hospital, the procurator Fiscal has the right with the new law to carry out a post mortem “in the public interest”, which means if the case is interesting to doctors. In practice the fiscal may not know that a post mortem has been carried our in his name until it is done. The pathologists want the post mortem. It is now possible if the body parts are needed for research to have a post mortem carried out. This can happen when the person or relative objects to the body being used for research.
Originally, the remit of the Procurators Fiscal was to discover the cause of death only.

In general, I believe we need the Procurator Fiscal to carry out post mortems this protects us all. I feel his remit should be protection and this system should not be used to procure material for research.

This technically was how it used to work; when we objected to the fiscal, being used to procure material for research it was then made law, that the fiscal could do this.

In the past, for instance much research was carried out on cot death babies. The Fiscal could not produce one form of authorisation from one parent for the use of the bodies of the babies for research and yet we all know the research was published. The fiscal only could carry out these post mortems. It is though obvious that the post mortems were vital to protect babies from the possibility that a parent may have killed them.

If I use we and us, it is simply to describe the organisation that I chair which is Justice for the Innocents. Originally the parents in Scotland whose children had organs removed at post mortem. We have grown into an organisation, which tries to make authorisation for procedures honest and fair.

The real reason pathologist want to use presumed consent is that people who do not have the ability or opportunity to access a computer to object will have organs removed without consultation. The people who cannot access an opt out card or just simply forget to take it with them.

The people most at risk are the alone, people with language difficulties, people with lower mental capabilities be that through lack of intelligence or mental health issues. The list goes on and on.

The volume is not really the issue, as we do not have the ability in Scotland to do more transplants at this time. The issue is that a blood test will confirm suitability.

scunnert wrote:
A useful link:

www.eubios.info/NBB/NBBOT.htm

hi scunnert

I cannot get that link to work so I am now having a tantrum that did not work either

I'd persevere with the link, Lydia. It works for me. (I'm using Firefox 3 browser).

Martin wrote:
I'd persevere with the link, Lydia. It works for me. (I'm using Firefox 3 browser).

Hi Martin,

Unfortunately you are advising a person who as yet cannot record from the telly. I have no idea what a Firefox 3 browser is. I have no idea what my broweser is. Bless you for trying.