Tissue donation for research into brain disease

Listening to an item on the Radio 4 Today Programme about research into Altzheimer's Disease and other illnesses that affect the brain, and the shortage of brain tissue available for research, I was reminded of what happened when my mother died in 2003.

Sadly, by the time she died, she was suffering from dementia, but some years before she had decided that she would like to leave her body for medical research. Neither of my parents had enjoyed good health in their lives, and I think that she saw it as a way of giving something back to the medical world that had treated them, and indeed probably saved my life as a baby too. My mother wrote to the Bristol University Medical School who agreed that, subject to all the usual caveats, they would like to have her body when she died. The letter was carefully placed with her will so that I would be able to arrange matters when the time came.

In the event, the medical school was unable to receive her bequest; they were not accepting the remains of anyone who had suffered from dementia because of fears about CJD. While I understand that this could potentially present dangers to those handling bodies, the thing that I find hard to understand was why they did not make any alternative suggestion. Surely a medical school must be aware of research being carried out in other places? If it had not been for a wonderfully helpful funeral director, I would just have accepted what they said and my mother's body would have been cremated.

Fortunately, the funeral director did not just take "no" for an answer. She remembered that some time previously she had been involved in facilitating the donation of a brain to King's College, London for reasearch specifically into dementia - a member of this research project was one of the people interviewed on the radio this morning. Time was of the essence, as my mother had died over a weekend so everything had to be completed on the Monday if the tissue was to be in a useable condition. In the space of a few hours, the funeral director got in touch with King's College, arranged for the necessary post mortem work to be done locally, had the consent forms faxed to her for my signature and faxed them back, and taken my mother to Worcester Royal Hospital. By mid-afternoon, my mother was brought back to the funeral parlour and we arranged for her funeral in the normal way.

What struck me then, and again listening to the radio this morning, was how lucky we were that we were able to fulfil my mother's wishes. It was sheer chance that the funeral director was aware of the research at King's College, and was generous enough to go to considerable trouble to follow the matter through. OK, if I had searched the internet I may have found that or another project, but at a time of bereavement one's first instinct is not usually to start typing things into a search engine - well mine isn't, anyway. And in any event, with literally only hours available to us, the chance of achieving a satisfactory outcome would have been remote.

As someone who conducts numerous funerals in the course of a year, I am as aware as anyone of the vast spectrum of attitudes that people have to the mortal remains of their loved ones. At one end of this spectrum people see a body as still very much part of the person they love, and cannot bear the thought of them being violated in any way. At the other end people feel that all that is important about their loved one is now somewhere else, or perhaps has ceased to exist, and that the body is merely the discarded container. Attitudes range between these two extremes, and have little to do with religious belief. I am always impressed by the sensitivity of funeral directors who have to do their job in a matter-of-fact way, yet show enormous care to the feelings of relatives and friends. I hope that I have not upset anyone's sensibilities in writing about this subject, and have tried to address it as delicately as possible - if not delicately enough, I apologise.

We have all heard stories about people who have been upset by members of the medical profession who do not respect the feelings of bereaved families, although hopefully these are the exceptions rather than the rule. However, I do find it really surprising that when one medical group is offered a tissue-donation which for any reason it cannot accept, there is not a readily available list of others who may be glad to receive it. Both my mother and my mother-in-law ended their days in a state of dementia, which everyone agrees is a tragic culmination of a long and productive life. I am pleased that I was able to fulfil my mother's wishes, perhaps in a way that was more useful even than she envisaged. But in the light of my experience, I was saddened to hear the researchers this morning talking about the desperate need for the material for their work to find the causes of dementia and other debilitating brain diseases.