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![Link to Alan Milburn's [Secretary of State for Health] Speech to the House of Commons [UK Government] on the 30th of January 2001](../images/report2.gif) |
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Frequently Asked Questions When parents hear the terrible news about their child's organs being kept, it can lead to anxiety and turmoil. What you are going through is something that those of us in PITY II have been through. Many of the questions you ask are the same as those we asked, so we have drawn up this list of frequently asked questions, with answers. We hope they help. Alder
Hey has said that they have retained my child's organs. What do I
do now?
I have received a call from Alder
Hey confirming they have retained my child's organs. The most important thing is not to feel pressured into doing anything quickly. You have made an important move in contacting PITY II because we have all been there and will help you through this nightmare period.
PITY II is made up of parents and families who have been through what you are going through now. If you want to ask anything, or just talk about what you are going through, what happened to your child, the effect on the rest of your family, or anything else, please ring your co-ordinator or any committee member - or contact the office listed at the top of the page. If you would like to speak to another parent whose child died from the same condition as yours, please contact the office and we will try to arrange this.
back to questions | top of the page Joan Wheeler set up the group, in November 1999, when she discovered that the heart of her son had been kept by the hospital. The group consists of parents and family members affected by organ retention at Alder Hey who have come together to provide support to each other. As well as support, the group worked with the Redfern Inquiry to try and ensure that views of all parents were taken into account in the report. The group is very large and has members with a wide range of concerns. Other actions have included
Anyone affected by the organ retention scandal at Alder Hey can be a member of PITY II. Other interested people can join as associate (non-voting) members. There is a committee that meets twice a month. Committee meetings are open to any group member. PITY II has an office
in Stanley Community Enterprise Centre, County
Road, Walton, Liverpool, UK. There are also around 30 co-ordinators who keep in touch with members. They are spread across the North West and North Wales. Some co-ordinators arrange meetings for local families, some ring families, some send out information on a regular basis, others are available for you to ring them and keep in touch. An up to date list of co-ordinators can be found obtained by contacting the office. If you do not know who your co-ordinator is, or have difficulty getting hold of them, please ring the office, and we will help you. Co-ordinators receive minutes of PITY II meetings, minutes of the Alder Hey Serious Incident Project Board, and other relevant information. We also contact the co-ordinators if we need information to be circulated quickly around the group. As the group is growing quickly, we are always in need of more co-ordinators. If you feel that you would like to help, either as a co-ordinator, or to help an existing co-ordinator, please get in touch. As a group we do not have regular meetings for all of the members, only when there is something specific that we need to discuss. There will be a meeting soon to discuss the Redfern Report, and as soon as this is arranged you will be told. There will also be an Annual General Meeting of the group, in March or April, and again we will let you know when this will be. At this meeting we will need to elect committee members. The group has received some funding from the Redfern Inquiry to help with running costs. There are also regular fund-raising activities which are mentioned on this site (please refer to the Calendar and/or Latest News). If you have any good ideas, please contact the office. If you want to get financial compensation for what has happened then you will have to go to a solicitor. You do not need a solicitor:
Sometimes if a solicitor writes to the hospital for information this can take longer than if you do it yourself, as the hospital will refer it to their solicitors. If you go to a solicitor then you should check that they are qualified to do personal injury work, as this is a very specialised field. The solicitor will be able to advise you about costs. PITY II has a solicitor, Ian Cohen of Goodman's Solicitors in Liverpool. Ian has been providing advice to the group with regard to the Inquiry, as well as representing some individuals. There are also other solicitors who are representing group members. Alder Hey will meet reasonable funeral expenses, including a car and flowers. If you have unusual expenses, for example if your child is buried in a grave with others, and they may need to be moved, then the hospital will normally pay. Get your undertaker to speak to the hospital to confirm what they will pay for, or ask your linkworker on the helpline. back to questions | top of the page Why
did the hospital not contact me to tell me they The hospital feels that they should not contact people directly, as there may be families who would rather not know that their child is involved. They have therefore relied on the massive publicity generated by the organ retention issue to prompt people to come forward. Currently over 500 families have approached the hospital and been confirmed as being involved in organ retention. At Alder Hey there is a heart collection with 2,200 hearts, some with lungs or other body tissue attached. These are used mainly for teaching doctors, and research into heart conditions. They are kept in the Institute of Child Health (part of Liverpool University) at Alder Hey. The first hearts were kept in 1947. There are also 850 children who had all of their internal organs removed at post mortem. They were kept in a storeroom at a laboratory on Myrtle Street before being moved to Alder Hey in June 2000. Most of these organs were not used for any research, but there were some specific organs removed for research projects. These organs were mostly taken by Professor van Velzen, between the years 1998 and 1995, and others who worked with him. As well as these there are 420 foetuses, also kept at Alder Hey. There is also a larger collection of foetuses, and some other body parts of older children kept by the Institute of Child Health. Across the country there are many thousands of children who have had their organs kept, including Bristol Royal Infirmary, Birmingham Children's Hospital, Yorkhill Hospital in Glasgow and Great Ormond Street Children's Hospital. According to the national report completed by the Chief Medical Officer there are over 100,000 organs from adults and children that have been kept by hospitals in this country. back to questions | top of the page I didn't agree to any organs being retained - why have they done this? The information given to parents at the time of post mortem was not clear. If your child had a hospital post mortem you would have been asked to sign a form to agree to the examination. The form referred to the retention of "tissues", which most people would believe to be very small pieces of organs. If your child had to have a coroners post mortem (usually because the death happened around the time of surgery, or was sudden or unexpected) then you would not have been asked to sign anything. It is believed that doctors did not tell people what was involved because they did not want to cause further distress to parents at a difficult time. This attitude has led to all of us suffering a great deal of distress now that we know exactly what the hospital has been doing with our children's bodies. back to questions | top of the page Is it only children who died at Alder Hey who have organs there? No. Many children were sent to Alder Hey for post mortem examination from hospitals across the North West. In some cases there are children who had post mortems in other hospitals and organs were sent to Alder Hey afterwards. back to questions | top of the page Was it only Professor van Velzen who removed and retained organs? Professor van Velzen was at Alder Hey between 1998 and 1995, when most cases of multiple organ retention occurred. There are cases during this period when other pathologists carrying out post mortems retained all the organs, and several incidents of multiple organ retention outside of this period. Hearts were retained over many years, during the employment of many different pathologists. The heart collection has been used a great deal for teaching and research. The Redfern Report states that the collection has contributed to a dramatic reduction in the death rate of children after heart surgery. Very little research was done with the organs from the van Velzen era, although some research reports are listed in the Redfern Report. His expertise was in research into Sudden Infant Deaths (Cot Deaths). There were two specific pieces of research that were carried out on organs from this time - one on eyes, carrying out research into glaucoma. Another research study was into a part of the brain, the Cerebellum. If your child died between 1988 and 1995 the hospital should be able to tell you if your child's organs were involved in these studies. It has also been revealed that between 1991-93 Alder Hey were donating thymus glands, removed during heart surgery to drugs companies for research and the production of anti rejection drugs. Drug companies made a donation to the hospital to cover administrative costs. back to questions | top of the page There
was nothing wrong with my child's brain, lungs etc. For some children all the organs were kept, whether they were normal or not. With the heart collection although most of the hearts had abnormalities, some did not. This was so that doctors could look at both normal and abnormal hearts. When all the organs of a child were kept, that frequently included the reproductive organs of both boys and girls. As for most of these children there was no research carried out on the organs, we don't know why these were kept. At the time of post mortem small samples of organs are sometimes taken so that they can be looked at in more detail through a microscope. To do this pieces of organs are put into small wax blocks (about the size of a book of matches). After this very thin slices are be taken and put onto glass slides. For some children there may be 20 or 30 blocks and slides. This practice happens at all hospitals after post mortem - it is not unique to Alder Hey. The blocks and slides are kept indefinitely. Many parents want their blocks and slides back as they do not want the hospital to keep any part of their child. The hospital will not release blocks and slides taken at post mortem - they are waiting for guidance from the Department of Health. In some cases where organs have already been returned to families, blocks and slides were taken prior to the release of the organs. In these cases, the hospital will return the blocks and slides, and may be willing to pay for a funeral for them. back to questions | top of the page What
are all these reports about organ retention Because organ retention is such a big issue across the country there have been a number of recent reports into it. The Redfern Report
The Chief Medical Officer's Audit
The Interim Report of the Bristol Royal Infirmary Public Inquiry Organ retention was revealed as a result of the scandal of the Bristol heart babies, where surgeons were struck off the medical register as they were proved to have been operating on babies when they were not competent to do so. A public inquiry was set up. Although the inquiry is still going on, they published an interim report into organ retention. The Gould Report This was a report commissioned by Alder Hey in October 1999 when the extent of organ retention at the hospital became public. Dr Gould reviewed the practice of post mortems at the hospital mainly during the time of Van Velzen. The report was published in late December 1999, but was largely overtaken by events, as the Redfern Inquiry had already been established. The Underwood Report Professor Underwood was asked to review the pathology service at Alder Hey in early 2000. He made recommendations about accommodation and staffing. All of these reports are available in the PITY II office. Please ring the office if you would like more information or a copy of any of them. back to questions | top of the page No. Anybody from pre-viable babies through to elderley adults who have had a post-mortum examination could be involved in organ/tissue retention.
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top of the page Home | Latest News | Kidz for Kidz | Calendar | Poets Corner | Contacts/Links | email PITY II PITY
II (Parents who have Interred Their Young Twice) is the parents' support
group set up in the wake of the organ retention scandal
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This
is officially called the Royal Liverpool Children's Inquiry. It
was set up in the December of 1999 to look into the specific issues
around organ retention at Alder Hey Hospital. It was a confidential
inquiry, which meant that it met in private, and evidence was
given in private. The report was very critical of what happened
at Alder Hey, and made a series of recommendations about action
to be taken. It is a very detailed report and runs to 600 pages.
It was published on 30th January 2001. If you have not got a copy,
there are some in the PITY II office.
The
Chief Medical Officer, Professor Liam Donaldson is the most senior
doctor in the Department of Health. He advises the Secretary of
State for Health. When the issue of organ retention became public
he wrote to all hospital and medical schools to find out which
hospitals were retaining organs, what they had retained, and what
their consent procedures were. His report highlights how extensive
organ retention is, and also makes recommendations for changes
to the system so that it cannot happen in the future without proper
consent.