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| Organ scandal legacy lives on | Organ scandal legacy lives on |
| (about 2 hours later) | |
| By Clare Murphy Health reporter, BBC News | By Clare Murphy Health reporter, BBC News |
| Doctors still do not understand why some babies are born still | Doctors still do not understand why some babies are born still |
| The legacy of Alder Hey continues to cast a shadow over efforts to understand child death and disability, ten years after the scandal over retained organs broke, experts say. | The legacy of Alder Hey continues to cast a shadow over efforts to understand child death and disability, ten years after the scandal over retained organs broke, experts say. |
| At the time the revelations shattered public confidence in the pathologists who examine dead children's bodies for a living, and young medics steered clear of what appeared an increasingly ghoulish profession. | At the time the revelations shattered public confidence in the pathologists who examine dead children's bodies for a living, and young medics steered clear of what appeared an increasingly ghoulish profession. |
| But even a decade on child autopsy rates are still low. The number of postmortems is only half what experts believe is ideally needed to gain a better understanding of why some infants die, or are born with conditions such as cerebral palsy. | But even a decade on child autopsy rates are still low. The number of postmortems is only half what experts believe is ideally needed to gain a better understanding of why some infants die, or are born with conditions such as cerebral palsy. |
| At the same time doctors say rules brought in to address public concerns about keeping organs from dead bodies have had a knock-on effect on research. | At the same time doctors say rules brought in to address public concerns about keeping organs from dead bodies have had a knock-on effect on research. |
| Even in cases where tissue has been kept with the consent of parents, if it is to be used for any form of research ethical approval must be obtained - a process described by some pathologists as laborious and bureaucratic. | Even in cases where tissue has been kept with the consent of parents, if it is to be used for any form of research ethical approval must be obtained - a process described by some pathologists as laborious and bureaucratic. |
| Between 1988 and 1996 organs were systematically stripped from the bodies of children who died at Alder Hey Children's hospital without the permission of their parents. This came to light in 1999, and caused a national outcry. | Between 1988 and 1996 organs were systematically stripped from the bodies of children who died at Alder Hey Children's hospital without the permission of their parents. This came to light in 1999, and caused a national outcry. |
| Procedures for postmortems and stringent rules governing the removal, storage, use and disposal of human tissue were introduced by the Human Tissue Authority, which was set up in the wake of the scandal. | |
| The public can have confidence that human tissue is being taken, used and disposed of ethically and respectfully Adrian McNeilHuman Tissue Authority | |
| "It was an awful time - emotions were understandably raw and we were utterly reviled," says Waney Squier, a consultant paediatric neuropathologist at the John Radcliffe Hospital in Oxford. | "It was an awful time - emotions were understandably raw and we were utterly reviled," says Waney Squier, a consultant paediatric neuropathologist at the John Radcliffe Hospital in Oxford. |
| "The robust defense of what pathologists do and why they do it was lacking - and that unfortunately did have a longer term impact." | "The robust defense of what pathologists do and why they do it was lacking - and that unfortunately did have a longer term impact." |
| Small comfort | Small comfort |
| Dr Squier now receives a third of the 150 child brains she saw a year in the 1990s as hospital postmortem requests have fallen, although she says the numbers have recovered from a low of 13 in the immediate aftermath of the scandal. | Dr Squier now receives a third of the 150 child brains she saw a year in the 1990s as hospital postmortem requests have fallen, although she says the numbers have recovered from a low of 13 in the immediate aftermath of the scandal. |
| For many parents who have lost a child a postmortem can be a way to achieve some form of closure Katie DuffSands Organ scandal background | For many parents who have lost a child a postmortem can be a way to achieve some form of closure Katie DuffSands Organ scandal background |
| This has been achieved through a thorough overhaul of the way she collaborates with colleagues and a concerted effort to talk to the parents. "If I explain what it is I want to do, many are willing to help - and for some there is even a little comfort to be derived from it." | This has been achieved through a thorough overhaul of the way she collaborates with colleagues and a concerted effort to talk to the parents. "If I explain what it is I want to do, many are willing to help - and for some there is even a little comfort to be derived from it." |
| The most up-to-date infant postmortem rates are to be published this week, but have been hovering around the 40% mark for several years - although there are significant regional variations. | The most up-to-date infant postmortem rates are to be published this week, but have been hovering around the 40% mark for several years - although there are significant regional variations. |
| At the same time, the unexplained stillbirth rate has remained the same. If there are pathological processes behind this, they have yet to be uncovered - and are unlikely to be without an increase in postmortems. | At the same time, the unexplained stillbirth rate has remained the same. If there are pathological processes behind this, they have yet to be uncovered - and are unlikely to be without an increase in postmortems. |
| "Alder Hey is still a part of the reason why people may not request postmortems - particularly for older mothers," says Katie Duff of the stillbirth and neonatal death charity Sands. "But there are other factors at play - notably that clinicians are simply not asking. | "Alder Hey is still a part of the reason why people may not request postmortems - particularly for older mothers," says Katie Duff of the stillbirth and neonatal death charity Sands. "But there are other factors at play - notably that clinicians are simply not asking. |
| "We wouldn't want to pressurise anyone into agreeing to a postmortem they didn't want, but choice is imperative and parents who might have wanted one aren't being offered. | "We wouldn't want to pressurise anyone into agreeing to a postmortem they didn't want, but choice is imperative and parents who might have wanted one aren't being offered. |
| "Medical progress aside, for many parents who have lost a child a postmortem can be a way to achieve some form of closure." | "Medical progress aside, for many parents who have lost a child a postmortem can be a way to achieve some form of closure." |
| There is also the matter of time and distance. Reports in recent years have highlighted cases of bodies being transported across the country and parents being asked to wait weeks for the body to be returned due to a shortage of specialist pathologists. | There is also the matter of time and distance. Reports in recent years have highlighted cases of bodies being transported across the country and parents being asked to wait weeks for the body to be returned due to a shortage of specialist pathologists. |
| Looking inside | Looking inside |
| Mike Ashworth, a specialist in paediatric pathology at the Royal College of Pathologists, said such delays did not need to happen but that bodies would inevitably have to travel. | Mike Ashworth, a specialist in paediatric pathology at the Royal College of Pathologists, said such delays did not need to happen but that bodies would inevitably have to travel. |
| In the last 20 years cerebral palsy rates have barely changed... something is going on and we are not getting to the bottom of it Waney SquierPaediatric neuropathologist | In the last 20 years cerebral palsy rates have barely changed... something is going on and we are not getting to the bottom of it Waney SquierPaediatric neuropathologist |
| "You have to go where the specialists are - but this doesn't need to be a problem as long as the system is an efficient one and the body is transported, examined and released in a timely fashion," he says. | "You have to go where the specialists are - but this doesn't need to be a problem as long as the system is an efficient one and the body is transported, examined and released in a timely fashion," he says. |
| At present there are 60 full and part-time paediatric pathologists in the UK, enough to cope with the currently relatively low demand for postmortems - but the system would struggle were that number to increase, he warned. | At present there are 60 full and part-time paediatric pathologists in the UK, enough to cope with the currently relatively low demand for postmortems - but the system would struggle were that number to increase, he warned. |
| At the same time, a third of these are set to retire from 2015 onwards. Students were put off the profession in the aftermath of Alder Hey and the long lead-in period means shortages take time to manifest themselves. | At the same time, a third of these are set to retire from 2015 onwards. Students were put off the profession in the aftermath of Alder Hey and the long lead-in period means shortages take time to manifest themselves. |
| "Even now they don't get much exposure to us as part of their medical training," says Dr Squier. "But more generally many believe that technology will answer everything, that we can rely on hi-tech scans to tell us what's going on, that we don't need to cut things up. | "Even now they don't get much exposure to us as part of their medical training," says Dr Squier. "But more generally many believe that technology will answer everything, that we can rely on hi-tech scans to tell us what's going on, that we don't need to cut things up. |
| "But think about this: in the last 20 years cerebral palsy rates have barely changed despite the rise in caesarean births - something is going on and we are not getting to the bottom of it. | "But think about this: in the last 20 years cerebral palsy rates have barely changed despite the rise in caesarean births - something is going on and we are not getting to the bottom of it. |
| "We need to look inside - we need pathologists who will do this." | "We need to look inside - we need pathologists who will do this." |
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