The public has been aware for some time of the scandal of children's organs having  being retained by hospitals after a death has occurred. Elaine discovered that her husband Cyril's brain was removed after his death in 1987 and she is to be congratulated for her persistence  over so many years. Elaine has  brought into the public domain  further important  information on this issue, she has discovered: 

1. Organs from people who have not died in hospitals, but who have died in the community, for example at home or in a nursing home,  by accident or suicide  whose deaths have required a post- mortem, have  had, on a regular basis, organs removed from their bodies  for research purposes.

2. This involves adults. 

3. The person giving permission for this has been the coroner.

4. It is understood that such  removal of organs for research, without the consent of the relatives, has been against the Law.

In an article headed " Widow wins inquiry into brain removal" in the Times dated 30th July, 2001, there is a description of Elaine's 14 year battle  to obtain the truth and justice for her husband and family. Apparently there are 24,000 human brains in hospitals and medical schools and little is known about how many more were removed without consent. The new inquiry, commissioned by Mr Alan Milburn, will look at organ retention without consent carried out on adults who died outside hospital.

Elaine's husband committed suicide when he was severely depressed and she has been supported in her campaign to get an inquiry by her son, Austin, and also the mental health charity group MIND, whose spokeswoman said; "It is isn't an isolated case but we don't know who and where others are.. It's a dreadful case and we are afraid that people with mental health problems are discriminated against in all aspects of life and that lack of respect may play a role after their death too."

Below is a transcipt of Elaine's interview on Woman's Hour on this issue.

Elaine Isaacs speaks to Woman’s Hour presenter about a government inquiry commissioned to investigate the unlawfully retained brain of her husband following his death in the community.

P. In yesterday’s programme we discussed whether parents facing a post mortem after their child had died in hospital were given adequate information about what the procedure actually involved. Too often organs were removed and kept without a family’s knowledge. Following the Bristol and Alder Hey scandals, new guidelines for obtaining consent are being drawn up. But what happens when the death occurs – as most do – outside a hospital? Elaine Isaac’s husband, Cyril died in 1987. Because the death occurred at home, it came under the jurisdiction of the coroner’s court and unlike hospitals, they don’t need consent to order a post mortem or removal of organs if further investigation is needed. Because the Isaacs are Jewish, it was important not only that the burial took place within a day but that the body should remain intact. Elaine had no reason to doubt that this had happened until years later when she discovered that her husband’s brain had been removed and left in a university medical school. Elaine joined me earlier from Manchester and told me why this had happened. 

E. Well, solely for the purpose of a research project that was going on at Manchester University which, in the end it didn’t get used for because they didn’t have the medical evidence to back it up.

P. So, what happened to it then? 

E. Well, eventually it got destroyed, I believe, incinerated in approximately 1993.

P. How did you actually find out this very distressing news, Elaine?

E. By a sheer fluke, because I’m at the GMC over my late husband’s GP – our ex-GP. I’ve been trying to pursue a complaint against him now for years and years and I finally landed at the GMC, in December ’99. When I went down to look through the papers that had been sent, I made the observation that there were some medical record’s notes made, not there. My caseworker said, “Well it’s not important, you know you’ve got them”. I was just so angry and upset at that as it’s the principle, you know nobody produces everything that they should. So she said, “Fine, we’ll write again”. When I went back in April 2000, April 5th, she said “Well, they’ve sent more and they say this is everything now. I’ll get you a drink, sit down and look through, take your time”. In doing so, I discovered a letter, an undated letter, which was obviously had been sent just very shortly after my late husband’s death, from the University of Manchester. It said ‘We carry out research into brain chemistry and mental illness and we collect post mortem brain samples’. And then it goes on to ask ‘Please list drugs on prescription current at time of death. If the patient ever had contact with a psychiatric hospital, please indicate which hospital. Please indicate whether the patient had a history of dementia: mild, moderate or severe; schizophrenia, major depressive or manic illness; or no known psychiatric history’. If there was no known psychiatric history, then that person’s brain would have been used as a control against the person who was suffering from one of these relevant psychiatric illnesses.

P. How did you feel Elaine, because it must have been so distressing for you. You know, your husband had been depressed and he’d killed himself while he was depressed. How do you feel years later reading all this clinical information about your husband?

E. Well, you know at first I just thought I was actually going to die. I just sort of couldn’t believe how this could have possibly happened. I mean number 1. I had never understood really why we needed a post mortem; it was obvious how my husband died.

P. So was the coroner within his rights to order that the brain should be removed?

E. No. No, because there was no… He didn’t need any clinical diagnosis and that’s the big difference. It was just removed because obviously there was this little set up between the coroners, research pathologists and the mortuary that a researcher wanted brains.  And when they knew there was a body, they’d get a telephone call, they tell you that a body will be there at the time of PM and do you want the brain or not?

P. The law is quite clear that body parts can be retained if further investigation is necessary, which you claim wasn’t necessary in this case

E. Yes. No, that’s to establish cause of death.

P. But they can’t be retained purely for research purposes?

E. No. It’s there in the 1961 Human Tissue Act.

P. Do you think that the fact that your husband had been suffering from mental illness, do you think that somehow a patient who has suffered like that, somehow is treated with less respect?

E. Well, yes. We all die eventually one day, but people are entitled to help, treatment and the families are entitled to be advised of what’s going on.

P. The mental health charity MIND, Elaine, has said, it’s concerned that yours is not an isolated case and in fact few people with mental health problems do have a family like yours to actually stick up for them and make sure that their rights are respected.

E. Yes, I think I would agree with that wholeheartedly and it’s also the hardest thing to talk about if, when you do pluck up the courage to come forward. Somebody who’s had mental health problems; because you’ve seen somebody change and perhaps become someone you can no longer relate to and basically your memory of that person is somewhat different when they died than what it was during your lifetime with them.

P. Its very hard to establish the fact in many of these cases but is your impression Elaine, from your own investigations, that this retention of brains from people with mental health problems is a common practice? Was a common practice?

E. I think unfortunately, I think yes because the people, who want to do research into the various mental health illnesses, yes want brains and 44% of organs taken have shown that they are brains.

P. I came across a similar figure, Elaine, that up to 25,000 brains have been retained following post mortem. If that’s the case, and because of the distress knowing this causes families, do you sometimes think it was better not to know.

E. Well, I think if the truth has to come out, it has to come out and I’m a person who believes intruth. I can’t really accept areas of grey. So although it has brought us great distress and will do probably for the rest of our lives - my son and self – if it had to come out, it had to come out. I think it strange in a way. I feel as if I had to find it out and therefore by a sheer fluke and accident, I have done. I mean it never occurred to me when I heard about the children, although I felt it had happened to adults, to make any contact…

P. You mean between the Alder Hey and Bristol cases?

E. Yes. Because I felt, well my husband didn’t die in hospital, we’re Jewish, we don’t want post mortems. You know, there was no need for clinical examination of any of his organs.

P. And what your investigation has highlighted as well Elaine, which a lot of people might not realise is the power of the coroner’s court has as opposed to hospitals over the question of consent. In fact a coroner doesn’t need any consent.

E. They don’t need any consent. No, no they’re just like a law unto themselves. If I could just add and say while everything is being addressed - which has centred 99% on babies and children and NHS hospitals -  that families now can have the right to see a Chief Executive, a pathologist and everything. If universities, as happened in our case, have got organs from the family, what provision will be made for these? Is the Chancellor or the Vice Chancellor of a university going to meet with you? Is that pathologist going to be brought along to meet with you? It’s not all under one umbrella like the NHS.

P. The government has just announced an official inquiry. What do you hope to achieve by that Elaine?

E. Well I hope it will show, unfortunately, the road that I’ve been down. The road that unfortunately many thousands of other families have been down, others that probably have no idea or don’t know. It’s not just if somebody died in hospital. It’s not just if a baby or a child died. It’s everything from: foetuses, to babies; teenagers; younger adults; older people; middle aged people; the people who died in the community,( which is the large percentage of coroner’s post mortems), which are deaths in the community i.e. not an NHS hospital.

P. And you want to see changes in the law rather than further guidelines?

E. Oh yes, it has to be the law. But then on saying that, there is a law for us. It was in ’87 (the year of Cyril’s death), it still is now and what’s happened? The law’s been broken – I don’t see any prosecutions, do you??