email PITY II

Today's Date

Letter from Margot Brazier Chair of the Retained Organs Commission

As you will be aware, the Commission will cease to exist on 31 March 2004. The principal purpose of this letter is to thank you, your committee and all your members for the untiring work which you have done for other families involved in organ retention.

The support of others who have shared such a bitter personal experience has been crucial for literally thousands of people. Those of us on the Commission who have not known that experience cannot truly understand its impact. To be able to work with members of support groups who, so sadly, do have that experience has been a privilege.

Your work has helped so many people and also informed the Commission's activities. The determination and eloquence of support groups and of many individuals ensured that the political will to change the law remained firm. Your endeavours helped bring about the Human Tissue Bill. That Bill will provide that human organs and tissue removed during a post mortem examination can only be retained and used in medical education, research or audit with the explicit consent of either the deceased during his or her life, or close family members. The Bill is not easy to read so I attach a copy of my personal interpretation of it in the form that it left the Standing Committee of the House of Commons.

The Bill is only part of the story. The overwhelming majority of post mortem examinations today are ordered by the coroner. Where a coroner orders a post mortem there is still no formal right for a family to object. Where a coroner's post mortem is ordered, organs and tissue may be removed without consent but only for the purpose of ascertaining cause of death. Once the coroner is satisfied as to the cause of death, any further retention or use of organs or tissue does require consent. The Human Tissue Bill applies in full as soon as the coroner's work is done. However, the coroners' system itself needs radical reform to take a proper account of the interests of bereaved relatives.

The Home Office published proposals for reform, consolidating the recommendations of the Luce Review and the Shipman Inquiry, on 15 March 2004. An electronic version of the Paper can be obtained from:

http://www.official-documents.co.uk/document/cm61/6159/6159.htm

I hope to see a new Coroners Act sooner rather than later to complete the process of reforming antiquated and inadequate legislation.

Laws alone can only do so much. Laws must be widely understood and enforced. The Human Tissue Bill proposes to establish a Human Tissue Authority. That Authority will have the responsibility to ensure that the new laws are properly publicised and to develop and monitor good practice.

It will have a lay chairperson and up to half its members must be lay people. Families who have been affected by organ retention have a voice which should be heard on the Authority. I trust they will be. Membership of the Authority will be advertised openly. Do encourage your members to apply.

Hope for the future is cold comfort for so many people injured by the past. I am painfully aware that many of your members have not been able to receive all the information which they would have wanted, that others still have agonising decisions to make and that new enquiries are still being made.

Media coverage of the Human Tissue Bill and reports of the organ retention litigation may cause families to revisit previous concerns and provoke new concerns for other families. When the Commission closes, Strategic Health Authorities in England will be responsible for monitoring how Trusts handle enquiries. We have held workshops with all the Strategic Health Authorities and I have written personally to all Strategic Health Authority Chairs. We have urged Strategic Health Authorities to take their new responsibilities seriously.

We have encouraged them to be open to approaches from families where there are concerns
about how Trusts are dealing with the enquiry. We have stressed the benefits of good communication with support groups. In Wales, arrangements to fulfil the functions undertaken by Strategic Health Authorities in England will involve NHS Trusts and the Welsh Assembly Government's Health department.

Strategic Health Authorities can only do so much. Responses across the country may vary with
some Strategic Health Authorities more disposed to work constructively with families than others. A number of families will continue to want a more personal form of support. You will want to know that the National Bereavement Partnership has set up a national helpline which aims to support families and the general public by providing information about organ retention. The helpline will be operational from Friday 26 March 2004 on: 01179 554 055.

The need for support from people who share a tragic experience will not cease when the Commission closes. Support groups existed before the Commission was set up and will survive us. For many of you your work will go on.

I end as I began with the Commission's thanks to all of you. We have met over a thousand people affected by organ retention. We have learned from you. Meetings have often been painful because the experiences shared with us were so painful. I have been personally touched by how generously I have been received even when the Commission did not deliver all you hoped for. I shall never forget the families I have met. I hope to meet many of you again in less formal and happier circumstances.

Margaret Brazier
Chair of the Retained Organs Commission

---

top of the page
Home | Latest News | FAQ | Kidz for Kidz | Calendar | Poets Corner | Contacts/Links | email PITY II