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Monday, 5 February, 2001, 13:06 GMT
Van Velzen interview in full
Professor Dick van Velzen
Professor Dick van Velzen: "I was following protocols"
Former Alder Hey hospital pathologist Professor Dick van Velzen is a specialist in cot death syndrome.

For many parents he was the best hope of understanding why their beloved babies had died.

Yet now he stands accused by an independent report of abusing that trust.

Here, in an exclusive interview with BBC correspondent Niall Dickson, Professor van Velzen defends his actions.


Niall Dickson: Professor van Velzen, you've been propelled into notoriety. These last few days must have been very difficult for you and your family.

Professor van Velzen: They've been very very difficult.

ND: What's been your reaction?

PvV: In what way?

ND: To the report and accusations within it.

Lies

PvV: We were devastated by them, both myself, my wife, my family, my friends, and colleagues.

ND: Let's look specifically at some of the accusations. It says that you lied and you cheated. It goes on to say that you ordered the stripping of the organs of every child that came into your department irrespective of parents' wishes. Is that true?

PvV: No that's absolutely not true. The accusation as it reads states that I did that within a week of my arrival. What I did in fact within a week of my arrival in this totally rundown, substandard, dilapidated department, was implement international protocols which are the same in every country, in every text book. No more, no less. I've since worked in other laboratories where people do the same. In the years I worked in Liverpool people came from abroad and worked with me - [including] a professor from Cape Town for up to a year - and they all did the same. They are international protocols. What I did was implement those in the first week of my arrival.

ND: When you talk about international protocols do those international protocols say that you should take out every organ from every child?


People forget to tell parents what a post mortem is. It's terrible but it's not my fault

Professor van Velzen
PvV: Those international protocols say that it's impossible to understand why a child died, a child that tends to react with the whole of its body, disease affects all of its body, until you've studied all the relevant parts...as they are described in every textbook.

ND: Did you believe the parents had given their permission to do that act of removal of all the organs?

PvV: I think it's very important for you to understand that from my perspective. This question already tells me that you think I did not. Parents have either signed consent for a post mortem or it was a coroner's post mortem. Even Alder Hey in its original letter to the GMC confirmed that in this respect I had done nothing wrong. So I have not taken organs without parents' permission. I have carried out post mortems with parental consent... People forget to tell parents what a post mortem is. It's terrible but it's not my fault.

ND: So you believe that every single one of the hospital post mortems that you carried out, you had permission to remove all the organs from that body and to retain them?

Informed consent

PvV: I have not removed all the organs in every hospital post mortem I have ever done. There have been limited post mortems, there have been plenty of post mortems in which no consent was given for the opening of a skull and removal of the brain, and all that wasn't done. So you can't say that.

ND: So all the ones where the organs were taken out, as far as you're concerned, parents gave permission, if it was a hospital post mortem?

PvV: Yes.

ND: Were you surprised that there weren't more parents not agreeing to all the organs being taken out?

PvV: No. I think what that reflects is that parents were not given the time to discuss with a consultant clinician, and not the junior, junior house officer at two in the morning, that parents were not given enough time to discuss what they might want. I think if that had been done, we would have been asked more often either not to do a post mortem at all or to do a limited post mortem. And I've always advocated for parents to be given that option.

ND: A coroner's post mortem has a very limited remit. Did you ever retain organs when you were asked to do a coroner's post mortem without the coroner's permission?


Parents were not given the time to discuss with a consultant clinician, and not the junior, junior house officer at two in the morning

Professor van Velzen
PvV: Again there's a great deal of confusion here. The coroner asks me to do a post mortem study to answer two questions. One, what is the cause of death and two, he asks at every inquest, was this child prior to death a totally normal and healthy child? Neither of those two questions can be answered in the case of children without histology investigations. You cannot give a comprehensive yes or no or a truthfully complete answer unless you have done a complete study.

ND: Are you saying therefore that your process of removing all the organs for a coroner's post mortem, first of all was understood by the coroner, or should have been and was done elsewhere in the country, as a normal process?

PvV: In answering that question you must understand that we were the first academic department in the UK where paediatric pathology was supposed to have been invented. We were going to be looked at very critically by everybody and instead of playing lip-service to the textbook we would be required to be seen to adhere to protocols and to provide the best possible standard of care, which meant comprehensive investigations. I did not want to see a child die as a cot death when he had an adrenal gland disease. You could not afford to have hereditary disease diagnoses missed and a child booked out as having a cardiac defect only.

ND: Did you ever lie to parents? The report says you did both about post mortem methods and findings.

Professor van Velzen
Professor van Velzen had a huge stockpile of children's organs
PvV: I cannot at the present answer that. There is a 500-page set of allegations that has only reached me in the last couple of days and without my own documentation and full access to that I can first of all not understand what is being alleged and I certainly cannot answer comprehensively.

ND: Can you answer just in terms of how you dealt with parents? Have you generally approached them in an honest and open way?

PvV: When this broke I voluntarily drove to Liverpool and presented myself and all my documentation to those parents. In the subsequent months and years my phone has always been available and many parents have called me and I've taken hours and hours of time to speak to them. I was one of the few pathologists of cot death children [to do this] as often and as long as they wanted with...

ND: Do you understand why parents are angry now?

Microscopic examinations

PvV: I can understand the anger of parents if it were true what is being stated. I think parents would be a whole lot angrier at different groups of people if they knew the full comprehensive truth.

ND: The report also comments on the collection of organs that you made, says it was unnecessary, excessive, illegal, unethical because there was no likelihood that the bulk of those organs collected would be used for research. Is that fair?

ND: It is not fair and it is not correct and it is not true. If as you state, people would like to do that and these organs were taken for research, the only problem presently is in the consent form - where it says tissues the word organs should be mentioned for people to have given informed consent, and they weren't informed. And if you also say that there was no hope that I could have taken a lot of those organs for valid research in the future and thereby showed disrespect than you are creating a false impression. Those organs were taken to do histology for post mortems.

ND: That's to say, if you can explain that, microscopic examinations?

Criminal

PvV: Microscopic examinations. A lung at operation may look ill, the microscope will tell you which organ has caused the infection. A heart may look surgically operated on correctly. The microscope may find that there was a viral infection of that heart before operation. You need to do microscopy. That is why those organs were taken. The reason why they are still on the shelf and why a sub-selection has not been made to keep for research, that I could have the faintest hope of finishing, is because the reports were not finished. Sub-selecting from that for my own research would have been selfish, it would have been unethical and unprofessional because if any time at a later date funds would have become available to finish these reports, for those parents who have now been waiting for eight years or more, then the person who would have destroyed them would have been the criminal. And I refused to do that.

ND: Why did you allow such a backlog to build-up?

PvV: I did not allow such a backlog to build up. I wrote letter after letter after letter ending with a 1993 memo to the board of directors, the board of clinical directors, the CEO, which says this is ethically, morally and professionally unacceptable. How much clearer can you get? I did not allow this.

ND: Because you didn't get the support that you wanted?

PvV: I didn't not get the support I wanted, which sounds [like] a very selfish person who wants support, and in a childish way damages parents. The support that was needed, that was promised, that was agreed to, by NHS management to support and re-establish care for parents in that hospital where it had been absent for years was not forthcoming and that wasn't my choice, it was management's choice.

ND: OK, just a couple more points on research then we'll talk about the GMC. The report claims that you presented research papers on cot deaths under false pretences, that cases were not authorised?

Stolen records

PvV: Again I presently do not have the data from which these allegations are based. It will take me a long time to find in my files which you know I've kept freely available to everybody to find out what this refers to and if anything what that truly means.

ND: What about the more specific allegations that you stole medical records?

PvV: The allegation that I stole medical records is based on the finding in my hospital under my record of two sets of documents in a ring binder that ways Alder Hey property. I don't know what this specifically refers to and if these are Alder Hey property in the sense of case notes that got packed with my belongings at one time or another I would find that interesting because as a non-clinician I don't have case notes. So I would have to find out what this is about before I could answer.

ND: Let me ask you this, how could an independent inquiry have got it all so terribly wrong presumably acting from the best of motives?

PvV: I think it's very interesting to compare the Alder Hey's own internal enquiry, the Gould Report, with the independent inquiry you refer to. The discrepancy between those two is as great as between any presentation of the facts I would like to give and the Redfern inquiry. The Gould Report, Alder Hey's own report, clearly states that management knew, clearly states that management was informed, continues to document correspondence between management Dr Helen Carty in 1995, a professor in radiology, in which the hospital in 1995 says let's finish a few then turn the rest over to university for research - not my words - then for five years does nothing about it. I don't think what's interesting is the discrepancy between my opinion and the Redfern Report, I would like to see people compare the Gould Report, Alder Hey's own internal report by an independent pathologist, and the Redfern inquiry.

ND: I suppose the argument would be the Redfern report was longer and more thorough?

Unfinished reports

PvV: You can't change the fact that there's documents that management knew, and they wrote about these specimens and called them in their own words in their own documents, 'unfinished post mortems' from which we need finish a few and then turn the rest of the material over for research - not my words. Gould dug those up, the documents are in the report, Alder Hey has never negated that report. The Redfern inquiry makes no reference to that.

ND: To be fair the Redfern inquiry is very critical of Alder Hey management, very critical of the coroner, as well as being critical of you.

PvV: I find it interesting that the Redfern inquiry blames the coroner, as far as I can see from my quick scan, for accepting unfinished reports and basing legal action on that. But it does not raise the question why Alder Hey clinicians and Alder Hey management had for so long accepted unfinished reports and based counselling and patient care on that.

ND: Were you unhappy about producing unfinished reports?


Are you absolutely clear in your mind, you did not deceive, that you did not lie, that you were straightforward with parents?

Niall Dickson
PvV: I was extremely unhappy.

ND: But your argument is that you attempted to draw attention from management to this inadequacy in the service?

PvV: I did not just attempt, I succeeded. I have the correspondence of my documents being minuted at board of clinical directors' meetings, letters of management thanking me for submission of those reports, letters of management confirming that the reports were discussed at meetings and promises of acting on it.

ND: The General Medical Council has removed you from the medical register while they investigated. Do you think that's fair given the seriousness of the charges?

PvV: The GMC has temporarily suspended me, it has not removed me from the record for a maximum of 18 months pending an investigation that must start within the next six months. It has not removed me. That they would do so is a foregone conclusion. And I did not, not attend a meeting that I was instructed to attend. I had two days notice to attempt a futile attempt at a comprehensive defence based on a 500-page allegation, and based on that we chose not to even attempt it.

Time for an apology?

ND: Do you believe now that with a full investigation that you will be able to clear your name?

PvV: I have always submitted myself to total scrutiny of my actions provided every document, in fact I have more documents than the hospital seems to have. I have copies of everything and I will submit myself again and collaborate happily, positively with a true investigation.

ND: Parents now say they would like an apology from Professor van Velzen. Is this the time for an apology?

PvV: The main apology I can offer parents is that I have not resigned on their behalf early. I have always tried to do, again on their behalf, to work within the system to get them what they deserve.

ND: Are you absolutely clear in your mind, you did not deceive, that you did not lie, that you were straightforward with parents?

PvV: Yes, my actions in that sense are underscored by the wording of Ian Cohen.

ND: I'm sorry, can you explain that, from Ian Cohen, saying what?

PvV: Ian Cohen, the lawyer for two parents - who together with another lawyer for parents from Alder Hey, who after all this broke were provided with all the documents by me - have consistently on behalf of parents, voiced the opinion that I was a scapegoat from the beginning on.

ND: But to be clear about this, they criticise you as well as criticise others, is that fair?

PvV: Of course they would. I think I could be criticised for not resigning day after day after day. But in all honesty, it's easy to say in retrospect, I tried day after day after day to remedy the situation.

ND: There does seem to be something of a crisis at the moment with people in Britain unwilling to donate live organs. Do you feel any responsibility for that?

PvV: No, not at all.

ND: Why not?


PvV: Well if you look at the Alder Hey history with the sales of thymuses, removal of thymuses from live patients being operated on and constant use of thymuses for research without informed consent, that was a practice I protested against and warned against. It wasn't known to me at the time that these were actually, for a certain period, sold. But the practice started way before I came and went on way after.

ND: Do you believe it's this that's causing the crisis in live organ donations rather than the general crisis cause by the Alder Hey report and all the other revelations of organs being stored in hospitals all over the country.

PvV: The poor and bad publicity confusing the population at large has expanded from death and dead children and post mortem procedures to live tissues and live organs and inevitably that will have an impact on the next, wider circle, for example organ donation.

ND: Do you think you will be able to clear your name?

PvV: A am sure that in time the facts will come out. But I have a bigger concern. The bigger concern is that these parents need the truth and they need comfort and most of all they need closure and if I can do anything about providing the facts to an effective investigation, then the coming out of the truth will hopefully bring that to parents.

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