We are an organisation dedicated to the support of parents and relatives who have discovered their child or family member after death has had a post mortem without the knowledge or consent of a parent or relative or has had organs or body parts removed at post mortem.
The members of this organisation are from every area of Scotland and some who now live in England but their child died in Scotland. Our work involves supporting individuals or their relatives who believe medical negligence has occurred in hospital or through a GP.
We are not a charity we volunteers pay our own expenses when attending hospital visits with a client or offering support or doing the research necessary to answer the questions of relatives.
Part of our support network involves asking hospitals for information when relatives discover organs removed from their loved ones and perhaps having the information delivered to us. Death and post mortem include difficult facts to send to the newly bereaved and we can pass this data on in as far as possible language that is more acceptable to a grieving person/family. As we have gained experience, we also are more aware of the form of question, which will access the relevant information.
We try to change the treatment of relatives when a death occurs in a family to make the treatment less distressing; this involves a wide variety of subjects.
As an organisation, we campaign through writing to MSPs and visiting MSPs and any organisation we believe will be helpful to our campaign to try to gain their support, we offer MSPs and others case histories of clients affected by the issues important to us and we petition parliament. The petitions work their way through the Petitions Committee and then the Health Committee and optimistically to the floor of Parliament.
When the previous Executive ignored us, we searched for a way, which would induce the government through the fear of losing votes to listen to the views of the parents affected by the issue of post mortem and organ retention and act to right the unjust in the Human Tissue Bill and in Pathology Departments in Scotland.
We used the media in the past, to pressurise Parliament into preparing a bill (The Human Tissue (Scotland) Bill and eventually to get this Bill through Parliament. Unfortunately, this seemed the only way that our parliament worked under the previous administration. If you can gain the support of the public as we have, and show this support in our petitions with ten thousand signatures at times this lends weight to our campaign.
We brought this subject to the public awareness through marches and meetings that were publicised and eventually in latter years by chaining ourselves to the doors of relevant buildings such as the Crown Office, which eventually led to my arrest. The Procurators Fiscal dropped all charges and gave me a warning, which included the threat of prison if these demonstrations continued.
We fought hard for a Bill in Scottish Parliament, which would protect the bodies of loved ones, children and adults. The Bill passed through Parliament during a time that I could not be involved in the campaign but with a few crucial phrases included, those, which could take the choice from critically, terminally ill people, and even children as young as twelve years of age. In short, the most crucial phrase states that a person can give verbal authorisation for almost anything, the form this verbal authorisation takes is a signature from a witness, unfortunately, the bill does not preclude the form being signed and witnessed by members of NHS staff.
This means that if a person’s relatives do not reach them before they fall into a coma or die, all that is needed is a signature from any member of the NHS staff to say the dying person gave authorisation for organs to be used for research or transplant and that the person donated their body for teaching or research.
Under this same part of the bill, older and perhaps confused people, people with learning difficulties are in danger of losing their human right to choose, as are people who have language difficulties, mental health problems, anyone who must take drugs to reduce pain, and children over the age of twelve. The laws provided for the protection of people with learning difficulties are lax to say the least. The person alone in this world will have no protection at all.
We ask the question is it acceptable that because a person is alone or homeless or has language or mental health issues or just does not understand this topic that they lose their right to choose whether or not their body can be used in this way.
Our successes if we can call them that include new forms for hospital post mortems when asking relatives for authorisation. One, which gives full information about a post mortem or donation for transplant or teaching, and one, which gives less information. We have achieved tighter regulations for children under the age of twelve.
Unfortunately, in my absence the Executive passed a bill, which can bypass this system of authorisation by using verbal authorisation.
The same NHS staff that will sign and witness the forms we discovered had falsified documents in the past, which resulted in illegally performed post mortems without the knowledge of parents, organs stored, and used for research from children/adults without the knowledge of the parents and relatives.
We believe that as a rule health service staff are really ordinary honest people with the necessary integrity to do this difficult work but unfortunately a number of staff only see the assistance that a body can be in research and this as more important than the individual or relative or parent giving authorisation for post mortem or retaining organs. They see donation for any purpose as more important than the human right for a person to choose what will happen to their body after death.
We also have concerns that the person’s right to have medical treatment to save their life may be compromised if a doctor who also does research or has an interest in research deems this body useful for research or teaching or transplant. Would a doctor who has so little respect for life that he would perform an abortion, or use a foetus for research, consider a critically ill person with or without relatives has the right to use NHS resources to extend a life, or would he believe that his work in research or teaching is for the greater good of all?
The Human Tissue (Scotland) Bill also gives the legal right to the Procurators Fiscal to remove parts of bodies for research during post mortem without the authorisation of the person concerned or a relative. In effect, the Procurators Fiscal has the right to remove any body part for research during a post mortem under their protection
Without any authorisation, technically this gives pathologists or researchers access to any body, as I am unaware of any Procurator Fiscal refusing his authorisation to carry out a post mortem under his protection. It is admitted, by parliament that pathologists do the post mortem and then gain authorisation from the Fiscals office. We asked that the bill include written authorisation from the Procurators Fiscal to pathologists, this written authorisation could be by Email The Executive ignored this suggestion .
Although we support unreservedly the right of the Procurators Fiscal to order a post mortem when the cause of death is in doubt as this is for the protection of the public, we feel this department’s remit has always been and should be required to be to decide the cause of death. We would go as far as saying that post mortems carried out by the Procurators Fiscal should be carried out in separate premises, as this reduces drastically the access researchers have to the bodies of our loved ones. The areas, which have this facility such as Dundee, prove this opinion by the fact that we have not received any complaint from this area about the Procurators Fiscal using organs or body parts for research.
We have no indication if the new SNP minority government will support us, they did in opposition, we are aware they have so much to do in this their first time in office they will be forced to prioritise, we try to see a positive side in that other MSPs we know do support the issues we bring before them.
We should perhaps make clear the views of this organisation, we believe if we had the resources’ to do more research then fewer people including children would die. In Scotland, the research facilities and personnel are superior to most other countries their record speaks for itself.
We also believe, and have campaigned strongly for, education, which, we consider, will make the subject of research more of an issue discussed by families, and therefore less frightening when under consideration by a grieving family. This would also we think have the effect of shining a great big light on the subject of research and post mortem in general and therefore make less opportunity for the doctor or pathologist who will go to any lengths to get their research done. If the subject was more open and the public could see the life given by organ donation for transplant and by donating bodies for research and teaching more people would believe and therefore give authorisation for these procedures.
We feel though that with the best will some people will object and have the right to object this must be a personal decision.
We campaigned for the right of a person to choose the fate of his or her own body even if a relative disagreed. We believe that the crucial part of any agreement is the signature of the person whose body will undergo this procedure but if not then the nearest relative with knowledge of their views.
We requested in the past education in the upper levels of Schools. No driving licence or National Insurance documents issued to young or older people unless they fill in the form, which would indicate their choice for or against post mortem or donating their organs for transplant or donation for teaching or their unwillingness to make a choice at this stage of their life. Included with the form all the information needed to make a fully informed choice. This would in our opinion start discussions which would we hope also consist of parents and siblings getting involved in these debates.
We have spoken out in the past against the right of any researcher using the human embryo in research, as we believe this is life and whether or not it will save, a life is irrelevant. In our view, this cannot be man’s decision to make. In this research goes too far, there are limits to how much we can interfere with life itself. When a relative is dying, we say prayers for God to save them and for research to provide a cure but any person with a belief in god clearly would recognise this could not be at the cost of another human life no matter the age.
In short, we feel that although research, teaching and donation of organs for transplant will save lives, this should happen openly and this procedure should be legally and honestly authorised by the person who is to have this procedure after death or nearest relative with knowledge of their views. We give support to the issue of research as long as no human rights are violated by taking away a persons right to choose what will happen to their body or their life to further science.
Their will be people who no matter how much they learn about this subject do not wish their body to be used in any way and these views must be respected.
Within this organisation, the parents have a variety of problems, which can be directly attributed not just to the death of their loved one but also predominantly to the discovery and understanding posthumously that a post mortem has been carried out on their relative or child.
When informing relatives a post mortem will be required to take place officials advise relatives that a doctor will just have a “wee look” to see why they died.
We find that after death, a fog seems to descend and nothing much gets through to the grieving person. When this first shock starts to wear of and details seem to make their way through the haze this is when relatives ask questions. We have always advocated complete honesty from the beginning, as the details given at the time of death are the first to be considered by the grieving family members. Honesty seems to give the reaction that doctors/nurses/police officers have dealt with them fairly and can be trusted with the body of their child/relative. We are conscious that this is not easy for the person giving this information, we all have difficulties to overcome in any job we do.
If parents and relatives are not informed at the time of death of, their loved one what a post mortem involves and what will happen to the body of their loved one, the reaction when they eventually discover the truth is so much worse than the grief over their dead. Gone is any trust they may have held in the NHS and doctors in general. In its place are terrible anger, torment that never seems to go away and a feeling of guilt that they did not protect their loved one and an opinion that ignorance is no defence against their failure to protect.
We have in this organisation people who are so depressed that they will try to commit suicide or taking an excess of alcohol or drugs is not unknown anti depressants seem normal. They seem unable to carry on with ordinary life. Pain appears to take over their lives. Fathers walk away from families mothers no longer care for their other children.
Many parents feel the necessity to bury their child intact. We have parents in the organisation who believe that the spirit of their child will not live on when half of the body of their child is not buried and their bodies are not complete. The parents have nightmares about parts of their children still sitting in jars in a hospital or laboratory.
No matter how strong their belief in god we have parents who feel the body of their child is all they have left of this precious little person and no researcher has the right to violate this.
We are all parents with knowledge of this issue and identify with the terrible pain that the parents and relatives feel and we must try to help in any way we can by trying to offer comfort and practical help and by changing the future and the way researchers have free access to bodies without authorisation.
In no way can we justify morally the 1967 Abortion Act but we looked at the reasons it perhaps felt righteous to the politicians responsible for this and the woman who campaigned for this act. In the years preceding this act woman were ostracised if pregnant when unmarried. Their choices were few; financially the ability to eat, feed, and house their child if they continued with the pregnancy must have seemed very hopeless. We believe this act materialised as woman decided they had a role to play in society and this included the right to decide what happened to their own body. It seems they disregarded the fact that abstinence from sexual activity was an option. The fact that woman died and were physically damaged by the back street abortionists must contribute to the reasoning behind this act.
Now today a woman is supported, by the state, housed by the state, although it may not seem like a fortune they receive, it is certainly is a vast difference to the situation in the years preceding 1967. This fact alone convinces us that quite apart from the fact that to kill another human being is against Gods law that any political or moral justification for this act no longer exists. We wondered if our organisation should get more involved in trying to change the future of this act in Scotland. This issue was discussed, at length, however we decided that the work we do now quite literally takes up the lives of our volunteers, currently we have not succeeded in making the changes within the act that affects the lives of the people we support. We also decided that if we succeed in this, we have a challenge to look forward to in the future.
The committee discussion left us with many unanswered questions, predominant seemed to be if the option of abortion were not so readily available would our world change. If men, and woman, were given, no other alternative, than to bring up the children or consider adoption, for the children conceived through casual sex would our future world be wiser more principled as it is intended to be?
We as an organisation object strongly to the Opt Out system to harvest organs for transplant. Although it is vital that we have these organs to save lives, the BMA could not possibly give us a guarantee that every person in Scotland would understand or that each person could be informed, of their right to refuse and would they understand where to go or how to refuse. With the best will some people do not want to donate any part of their body and have the moral right to feel this way. Why if the BMA are so concerned with gauging public opinion on this matter will they not have a public debate with me, not my committee just me and I will face as many as they want to bring to a public debate in any media forum of their choice.
If at any time you feel the need to ask for more information, please feel you can contact us.
Thursday, February 14, 2008
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