Relatives' Questionnaire REVIEW GROUP ON THE RETENTION OF ORGANS AT POST MORTEM Relatives' Written Contribution Please return as soon as you are able to do so to: Review Group Secretariat 2E(N) St Andrew s House Regent Road Edinburgh EH1 3DG If, but only if, you wish to remain anonymous, please detach this front page and you need not sign at the bottom. The Review Group acknowledges with thanks permission from the Royal Liverpool Inquiry to adapt its Questionnaire to Scottish circumstances 1
Review Group on the Retention of Organs at Post Mortem Relatives Written Contribution On 22 September, Susan Deacon, the Minister for Health and Community Care, announced the establishment of the independent Review Group on the Retention of Organs at Post Mortem. The Group has been set up in response to the distress caused to relatives who have discovered that organs were removed at post-mortem and retained without their full consent. There are 2 types of post-mortem: hospital post-mortems, where those who have been responsible for the care of the patient think it would be helpful to study the cause of death in more detail, and post-mortems required by law, which are carried out on the instructions of the Procurator Fiscal to establish the cause of death. The consent of the relatives is not required to the carrying out of this type of post-mortem. In those post mortems required by law, organs and other material may be retained for the purpose of further enquires to establish the cause of death. However, the full consent of the relatives would be required where the pathologist removed or retained material for another purpose. The Review Group is looking at both types of post-mortem. As a key part of its work in devising a Code of Practice for all the issues surrounding the way post-mortem examinations should now be carried out, the Group wants to consult as widely as it can. The more it is able to find out about concerns about past practice, the better the position it will be in to make sure the new Code of Practice prevents those problems in the future. If you had experience of past practice in respect of a post-mortem, your contribution would be of great value to us. If you are prepared to share that information with us, you may find this questionnaire a useful way of doing so. However, you are entirely free to submit any information you wish in a different format (including on tape or recording if you would find that easier), and it is entirely up to you to decide which of the questions you want to answer. The Review Group is committed to openness in its proceedings, and to that end has established its own website (http://www.show.scot.nhs.uk/scotgrev). We would expect to include all of the information we receive on our website and as part of our report to the Minister. We would not publish anything without your full permission, though. In order to be on the safe side, if you do not make your wishes clear, we will assume you would prefer us not to publish what you send us. Where replies are published, details of all personal information will be removed, allowing complete anonymity for all everyone involved. That way, you needn t worry about your personal details being put on the website or in the report. Please tick this box if you are content for your completed version of this statement to appear on the Group s website and in its final report. 2
We are aware that if you do decide to provide us with information, that may add to the distress which you have already suffered. The following people may be able to provide help of different sorts: 1. If you are represented by solicitors, you can ask them for help. 2. You can get help from your Local Health Council. 3. The Secretariat to the Review Group will be pleased to help you or answer any general questions that you may have. 4. You might like to note that arrangements are being made to make counselling services available to those who need them. These will be advertised in due course but please tick the box here if you would like us to send you details of these services. 5. If you lost your child, there are a number of Parents' Support Groups that can offer emotional support. It should be noted, though, that these organisations are unable to give you specific information relating to individual cases : The Scottish Organisation Relating to the Retention of Organs (SORRO). Contacts: Geraldine MacDonald, 20 Pinmore Place, New Hurlet, Glasgow, G53 7PS Tel: 0141 881 5824 or 07940 491265 Mrs Lorraine McKinnan, 102 Robert Burns Avenue, Clydebank, G81 2EN Tel: 0141 952 2930 The Stillbirth and Neonatal Death Society (SANDS). Contacts: Elaine Currie, 20 Golf Gardens, Larkhall, ML9 2TQ Tel: 01698 883857 John Robertson, 38 Fairlie Drive, Camelon, Falkirk, FK1 4NP Tel: 01324 639605 The Scottish Cot Death Trust. Contact: Ms Hazel Brooke, the Scottish Cot Death Trust, Royal Hospital for Sick Children, Yorkhill, Glasgow, G3 8SJ Tel: 0141 357 3946 The Association for Children with Heart Disorders. Contacts: John Fegan, 100 Skye Road, Cathkin, Glasgow, G73 5JZ. Tel: 0141 634 0352 Margaret Coates, 3 Alva Place, Lenzie, Glasgow, G66 5NQ Tel: 0141 775 1602 3
This form is split into 4 sections. Section 1 deals with General Information about your child or relative. Section 2 deals with "Hospital" post mortem examinations. If you were asked by the Hospital to sign a form, then your child or relative almost certainly had a "Hospital" post mortem. If so, you should try to fill in Section 2 but not Section 3. Section 3 deals with "Procurator Fiscal s" post mortem examinations. If you had contact with a Procurator Fiscal or a member of his staff your child or relative almost certainly had a "Procurator Fiscal s" post mortem and you should try and fill in Section 3 and not Section 2. Section 4 deals with your feelings and views about what happened and how you think these procedures should be dealt with in the future. Everyone should try to fill in Sections 1 and 4. However, since there is a difference between hospital post mortems and Procurator Fiscal post mortems, you should try to fill in either Section 2 or Section 3 depending on what kind of post mortem was carried out on your relative. If you are still uncertain, try to fill in as many answers as you can in all sections. Do not worry if you are unsure, please just tell us that this is the case or leave answers blank. Please give your answer in the space beside each question. If you do not have enough space for your answer, please carry on at the end of the "continuation sheet. 4
Section 1 - General Information 1. Was the person who died your child or another relative? My Child If another relative: Daughter 2. What was his or her relationship to you? Yorkhill Hospital 3. Where did your child or relative die? Near Cot Death 4. What was the nature of your child or relative s illness? Please only answer Questions 5-7 if you were not at the Hospital when you were first told that a post mortem examination was to be carried out. 5. How were you told (eg, telephone, message given to you by another relative or someone else)? 6. Who told you (eg, doctor, nurse or other, senior or junior)? 7. Can you remember what you were told at this time? If you can, please tell us what you remember and anything that you said. 8. Did anyone speak to you about the post mortem examination generally? No. I was only told that a post mortem would be held because of circumstances eg, sudden death. 5
9. Who was it (eg, doctor, nurse, pathologist, Procurator Fiscal or a member of his staff, or other, young or old, senior or junior)? 10. Did anyone tell you where the post mortem examination would take place, and if so, where? No. 11. If not, where did you expect that it would take place? I assumed it would be at Yorkhill. 12. Was an explanation given for the post mortem examination and if so by whom? I was just told that because this was a sudden death, a post mortem had to be held after the Fiscal had been told. I was told by [a doctor] who was there when my daughter was pronounced dead. 13. What did they say? 6
14. Were you asked if you had any questions? No. 15. Do you remember what you asked and what you were told? (Please tell us as much as you can remember). I did not ask anything because I was told I had no choice in the matter because of the way my daughter had died. Before my daughter passed away the doctors had asked if they could take Sarah's organs and we refused. We were also asked if they could take skin biopsies and we also refused then she was pronounced dead at 1350 hrs on Sunday 31 January 1999 by [a doctor]. 7
16. Were you given any written information? No. 17. What sort of document was it? 18. What do you remember that it said? 8
Section 2 - Hospital Post Mortem Examinations Only (see page 1 for help in deciding if this section applies to you) 1. Were you given a chance to think about it or get advice before you gave any "consent"? 2. How long did you have? 3. Did you get any advice? 4. Who from? 5. What advice did they give you? 6. Did anyone explain to you that you could object to a Hospital post mortem? 9
7. Did anyone tell you that you could agree to a Hospital post mortem examination to look for the cause of death, but object to the retention of organs (including the brain) for "medical purposes" ("medical purposes" means for treatment, medical education or research)? 8. Were you asked to sign a consent form? 9. Did you read the form that you were asked to sign? 10. What did you say when you were asked to sign the form? 11. Did the form make it clear to you that there were two types of Hospital post mortem, one which simply looked into the cause of death, and one which also gave permission for the retention of organs (including the brain) for "medical purposes"? 12. If you read the form, or anyone mentioned the word tissue to you, did they tell you what it meant? 13. If you gave it any thought, what did you think tissue meant? 10
14. Did anyone tell you that whole organs, such as the heart, would be removed from the body? 15. What organs did they tell you about? 16. Did they say what would happen to the organs? 17. What did they say would happen to them? If they did not tell you what would happen to them: 18. What did you think would happen to them when the post mortem examination was over? 11
19. Where were you when you signed (eg, ward, office, or other - please specify)? 20. Who was with you when you signed (eg, friend, family member or someone else - please specify)? 21. How long after (or before) the death were you asked to sign? 22. Did anyone tell you the result of the post mortem? 23. Who told you? 24. Where were you when you were told? 25. What did they tell you was the result? 26. Did anyone tell you that the result might not be final because the organs had not yet been examined under the microscope? 12
27. Do you now feel that you fully understood why a post mortem examination was carried out? In your own words, tell us how you feel about the information that you were given. 13
Section 3 Post Mortems Required by Law (Post Mortems Instructed by the Procurator Fiscal) (see page 4 for help in deciding if this section applies to you) 1. Were you told that a post mortem examination was required? Yes. 2. If so, who told you? (e.g. police officer, Procurator Fiscal, doctor, pathologist) [A] Consultant at ICU, Yorkhill. 3. Were you told why a post mortem was required? Yes. 4. What information was provided to you? By whom? (If more than one person list all). (Please tell us as much as you can remember.) We were told a post mortem had to be held because Sarah's death was a sudden death. We were told by [two doctors]. 5. Did you consider that this information was sufficient? Would you have liked to have received more information? Less information? Yes. I would have liked to receive more information about the post mortem before it was done. 6. Do you know if any organs were removed from the body? If so, please specify which organs. Do you know why this was done? At the time of the post mortem I was not told that any organs would be removed or retained for tests. 14
7. Do you know if any organs were retained after the body was released for burial/ cremation? If so, do you know why this was done? No. I did not know that any organs had been retained after the body was released for burial. 8. Did the hospital ask you to fill in a consent form or otherwise seek authorisation for examining, removing or retaining any organs for medical purposes ( medical purposes means for treatment, medical education or research)? No. If they did, please fill in any questions in Section 2 that you can answer as well, to tell us what happened at that time. 9. Do you know whether there was any examination, removal or retention of organs for medical purposes? No. 10. Did anyone tell you the result of the post mortem examination? Yes. 11. Who told you? The Pathologist who did Sarah's post mortem. 15
12. Where were you when you were told? I had gone to Yorkhill Hospital for the results of the post mortem. 13. What did they tell you was the result? Acute Bronchopneumonia. 14. Did anyone tell you that the result might not be final because the organs had not yet been examined under the microscope? No. 15. Do you consider that there is anything which should be done to improve the information and services provided to next of kin? (Please specify). Yes. When I went to get the results of the post mortem, I had asked the Pathologist what the procedure was during the post mortem. He told me all organs were taken out, examined, weighed and small samples were taken from each organ for tests to find the cause of death. Then all the organs were put back before we were given the body back for burial. I had also asked [the pathologist] if any organs had been retained. I asked this because of everything that had been going on in the News at the time at the Alderhay Hospital. His answer to this was no organs had been retained. He would never do that because he had children of his own. Because he had said this, I thought he had been very truthful and sincere with me and because of this I totally trusted and believed everything he had told me. He had told me the cause of death had been Acute Bronchopneumonia. 16
Section 4 - Your Feelings and Comment on the Handling of the Information about the Post Mortem and what Happened 1. How would you describe the way that you were treated at the time of the post mortem examination? At the time I thought [the pathologist] had been sincere and kind and considerate. 2. If you are not happy about the way that you were treated what, if anything might have made the experience less painful for you? If you know that your child or relative s organs have been retained: 3. How did you first find out about this (telephone call, letter or some other way)? I had heard in the News that organs had been retained without permission so I wrote to Yorkhill to find out if this had happened in our case. 4. When did you find out? 1 November 2000. 5. If a letter, who wrote to you? Medical Director of Yorkhill Hospital. 6. If a telephone call, who spoke to you? 17
If your child or relative's organs have been returned for burial or cremation: 7. Has the Hospital told you that samples were taken at the time of the original post mortem? 8. Were you told that samples would be taken prior to release of the body for burial or cremation? If samples were taken prior to release of the body: 9. Did the Hospital ask for your consent before those late samples were taken? 10. If you know that organs or samples are still being retained by the hospital what do you wish to be done with them? I would like my daughter's brain returned to me, so I can bury it and finally lay my daughter in peace. 11. How do you feel about the handling of the situation by the Hospital concerned or by other organisations since the news that organs had been taken and stored without consent became widely reported? I'm appalled and deeply shocked that in this day and age this is still being done. It's bad enough when you lose your child, the hurt and pain stays with you for the rest of your life. You try to put your life back together again by picking up the pieces and trying to carry on with life as normal, whatever normal is. Then you are told this. Your life is turned upside down again. Not only yours, but the rest of your family's too. How can these doctors that you trust, and put your lives in their hands, turn round lie to you and deceive you, and then expect to get away with it. They should not get away with it. 18
12. Did you make an official complaint to the hospital at any stage? If so please give details of to who you made the complaint to, the nature of the complaint and the approximate date that it was made. Yes I did make a complaint. It was on 16 November. I and my family had a meeting with a [doctor]. I also asked [the pathologist] to be there. First, they agreed, then 2 hours before the meeting I was told he would not be present. I finally got my meeting with [the pathologist] on 7 December. I had asked him why he had not told me at the time that the brain had been retained, especially when I had asked if any organs had been retained. Why lie and say he would never do a thing like that because he had children of his own. Of course, as I had expected, he denied all knowledge of ever saying that to me. Just as well I had asked my friend to go to this meeting with me. 13. Is there anything else at all that you want the Review Group to know? Yes. At this meeting with [the doctor], he had said they were agents of the PF. Anything they had decided the doctors have to comply with them. When the Fiscal was asked, they said yes, this was true, but at the same time the Fiscal does not give permission to retain any organs without the parents' consent. So who is telling the truth to me? if you go to the Fiscal they blame the doctors. If you go to the doctors, they blame the Fiscal. So who is telling the truth? As a parent I'm not asking for compensation. No amount of money on this earth can make up for the pain they have caused. All I ask is for the Hospital to publicly apologise to myself and all other parents that are going through the same circumstances. I don't think I'm asking for much. Other parents may want compensation which they are entitled to, but all I want is an apology. That, and I want the Hospital to get the organ back for me. I was told I should be the one to get it back, but why should I be the one to do that? I think this should be the Hospital's responsibility and they should cover all expenses that need to be covered. For me, my point is I am very angry about the way I was lied to and now I feel the doctors and Hospital are trying to push the whole matter under the carpet. As a Muslim who believes very much in my religion, I feel my religious beliefs are pushed aside and not respected at all. Living in this country, being born and brought up here, I have always respected all other religious views. In Islam once a person has died, the rest of the family perform the funeral as soon as possible. If there are suspicious circumstances in the death of the deceased, a post mortem will be agreed to. But if there are natural causes of death, surely our views should be respected and we should be able to bury our loved one as soon as possible. Please, if we respect your religions, show us the courtesy and respect ours. When my daughter died, I thought it was the end of the world. When I held her in my arms as she died was the worst time ever. When I buried her, I thought I had buried her whole and she was at peace. Now that I find this is not the case, surely I should get the organ back and bury it as soon as possible. Someone should be held responsible for this. But the question is, will anyone be held responsible? Will this ever stop? How many more lives are going to be destroyed before anything is done? 19
Please tick this box if you would be interested in commenting on the Code of Practice once it is drafted or in being consulted on any further work of the Group. Signed Date... (Name in Capitals)... (Please correct any errors in the details on the front page for our records.) 20
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