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Alder Hey

Not requesting proper consent and not explaining things to people was wrong,
and I think there have been big improvements.  But I don't think that even the
parents of Alder Hey had envisaged that you'd have to ask consent for teaching
and training on blocks and slides that are taken anyway for diagnosis... We can
end up without having anything – not being able to teach anybody, and nobody
to do our job in a few years time

Irene Scheimberg (UK)

  More quotes on Alder Hey

What has become known as the Alder Hey controversy actually started at Bristol Royal Infirmary in 1999, when parents of children who had died there became aware for the first time that the bodies they had received for burial after postmortem were not always complete – that their children’s hearts and other organs were sometimes retained for further investigation or research.  

This was not a secret, but neither was it always made explicit to parents, and the revelation caused a storm of outrage directed at pathologists.  A subsequent Public Inquiry drew attention to other institutions, notably Liverpool’s Alder Hey Hospital.

It was a dark hour for pathologyPaediatric pathologists in particular came in for abuse.  As Sebastian Lucas puts it, “they really were demonised by the public.” Some received threatening phone calls at home; others found their children being bullied at school because of their parent’s profession.  “It was a dark hour for pathology”, says James Ironside, and a number of interviewees discuss the personal and professional ramifications. 

While all are agreed that reforms were needed, and that some practices were out of date with modern ethical standards, it is also felt that the media encouraged a highly emotional response, and that “the issue was really badly managed from the political point of view” (Irene Scheimberg). 

The result was that the pendulum of reform was pushed too far and too fast.  For many, the problem with the Human Tissue Act of 2004 is that it covers tissue from the living (surgically-acquired) as well as from the dead.  Since tissue is defined as anything containing human cells, consent is now required to retain and use even blood and urine for research.  In Scotland, however, a distinction was made between tissue from autopsy and from surgery. 

The issue was really badly managed from the political point of viewNicholas Wright comments on ‘the legislative burden’.  “You have to keep records of all sections you've cut of these tissues used for scheduled purposes, which is just ridiculous.” 

Not surprisingly, a major theme to emerge from the interviews is deep frustration  with the tangle of red tape that surrounds pathology practice almost everywhere today, and the threat this represents to existing archives and future collections of samples and specimens of human tissue that are so vital to teaching, research and advances in medicine.

One of the constructive outcomes of Alder Hey has been the recognition of the need for greater contact with relatives, and the establishment of specialist bereavement teams in some hospitals. 

At the time, Irene Scheimberg chose to meet with angry, grieving families affected by the controversy.  And paediatric neuropathologist Waney Squier was also forced to leave the privacy of the lab to answer the questions of parents.  It has been a positive move, and today she says, "I often tell the paediatricians or the coroner's officers they don't need to worry about talking to families, I'll speak to them."

 

Key interviewees: Sebastian Lucas, Irene Scheimberg, Waney Squier, James Ironside

See also: Autopsy, Legislation and Regulation

 

 

QUOTES

Nicholas WrightI think people are coming to terms with the Human Tissue Act basically, and it's far more intrusive than they thought it would be... [because] now surgically-acquired tissues are governed by the Act.  But not in Scotland, because Scotland said, "This is nonsense!"  Quite right, it's nonsense.  Now we have the bizarre position whereby surgically-acquired tissues in England are governed by the Act and you have to get all this permission and stuff, and in Scotland you don't have to do it.
 - Nicholas Wright (UK)

Waney SquierWhat's happened is that we've got a superb bereavement team now... [It’s] taking responsibility for asking for consent, because clinicians didn't want to do it and weren't necessarily terribly good at doing it.  And pathologists weren't either... [The team has] been trained in what we need to do...so they understand our side of it and they're also extremely good counsellors, as it were.  They know how to talk to people who are bereaved; they know what sort of information families want and how much information to give them.  That's actually been a tremendously successful innovation since Alder Hey.
 - Waney Squier (UK)

James IronsideWhat happened in Alder Hey was terrible...  Not helped, I must say, by the media.  You were made to feel that not only had you examined a baby that had died from cot death or something, you'd actually gone out and killed it beforehand.  Just terrible!  And also I think that we were not best supported by the minister of health at the time... I think a more measured response would have been better.
 - James Ironside (UK)

David LevisonI know of studies that have not been done because it’s just not worth the effort of going through the ethical hoops... It really does slow things up. 
 - David Levison (UK)



Irene ScheimbergI was disappointed by the way religious leaders were reluctant to confront this upsurge of superstition in people. They could have explained that, yes, it was wrong that things were not explained; it was wrong that the proper consent wasn't taken; or that not enough attention was paid to it.  But they should have assuaged people's fears about the effect on their souls of losing a little piece of liver or spleen or whatever.
 - Irene Scheimberg (UK)

David LevisonI’m at one extreme in this kind of thing… I don’t think that Alder Hey and Bristol were scandals.  They’re only scandals because the media say they were scandals... I know of quite a few people who have given up being paediatric pathologists because of this -- because they couldn’t stand the kind of pressures they were being put under, the phone calls, and the abuse they were getting as they walked home, and this sort of thing.  It has done a lot of harm to some people, and I mean it has really kicked paediatric pathology in the teeth.
 - David Levison (UK)

Sebastian LucasWhen Alder Hey happened, we [at Guys and St Thomas’] were more vulnerable than most other places in the country because we have the biggest collection of paediatric kidneys, hearts, and things anywhere. Much bigger than Bristol... We had a professional perinatal pathologist who was very interested in congenital heart disease, and she kept everything -- because one did [at that time]... She took this whole business very badly, actually, and after some months she left, and now the last thing she'll ever do is perinates.
 - Sebastian Lucas (UK)

I have to say the chief executive here was brilliant... He realised that organ retention was a big issue, we were vulnerable... and it had to be addressed head on, openly.  And we had to have an absolute protocol about what to do... We talked to people, and we were not sued.  We handed over stuff when we wanted to, but not very much stuff got handed over…
 - Sebastian Lucas (UK)

We have the biggest pathology museum in the country here, the Gordon Museum in Guys.  Not for a moment did we shut a door, remove an exhibit, close anything at all -- unlike Dublin, which closed its museum... Unlike the London, which cemented it in – I joke not!
...[Within this museum] we have a fantastic series of pots of malformed fetuses -- I'm very proud of them, though they are nothing to do with me, they're history.  Now this is not prurient stuff; this reminds the students that this is why we have prenatal scanning...  You can be lectured like mad about the importance of antenatal screening; 10 minutes in the Gordon museum and you can see why you do it.

 - Sebastian Lucas (UK)

In a way things haven't got all that much better [since Alder Hey].  They've got more bureaucratic, but there's still a huge grey area in tissue retention across the consented to coronial autopsy spectrum, and it's not very clear.  Or it's very clear what to do if you want to stay absolutely within the letter of the law, be squeaky clean.  You do nothing!  But the point is, to be good and to be useful for public health you need to do a bit more than that, and that's where the grey areas come in.
 - Sebastian Lucas (UK)

Irene ScheimbergI think a lot of effort needs to be put into explaining to people what blocks and slides are, and what research is... People need to know exactly what they are consenting to. This is part of a diagnostic process that is only possible because of what we have learnt, so we need to allow that learning to continue... I hope that at some stage it will be recognised that it's impossible to carry on without imparting knowledge to future generations, and without ensuring that the work we are doing today is properly controlled.  I mean, if everybody were to say, "No you can't have tissue for audit", I could write whatever diagnosis I liked! How are we going to find people who are making huge mistakes?
 - Irene Scheimberg (UK)

At one point during the Alder Hey crisis I said, "I am going to go and talk to the Liverpool parents so that they realise that not all pathologists have horns and are horrible".  At the beginning they were all very confrontational -- there were lots of them -- and I said, "I do understand what it is to lose people, to experience the untimely death of people".   And I told them my story -- because they were so immersed in their grief that they didn't realise other people might have had a traumatic history as well. They were surprised because I was crying. One of them came up and hugged me afterwards, and said: "I never thought I'd ever hug a pathologist."
 - Irene Scheimberg (UK)

When I ask on the consent form: "Can I use the blocks and slides to teach other people?  Can I use them to audit my work so that I don't make mistakes that I'm not aware of?  Can I use them to do basic research that will not affect you or your family in any way?", when they say yes, they feel part of society and they are fulfilling their duty.  They understand that they had the right to say yes or no...

When people say no, I think it can be for two reasons.  One, because when they are asked, things are not explained properly.  And the other reason is because they are really hurting.  Some people are really angry and they feel the system has failed them.  Another thing is superstition – "God knows what you're going to do with this material.

 - Irene Scheimberg (UK)





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