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Dealing with the legacy- a collaborative approach Dr Mark Caswell Assistant Medical Director

Dealing with the legacy- a collaborative approach Dr Mark Caswell Assistant Medical Director. Historical background Bristol Royal Infirmary June 1998 Prof Anderson Sept 1999 Organ retention scandal. Early Parent Involvement Post-mortem consent workshops Spring 2000 40+ families invited

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Dealing with the legacy- a collaborative approach Dr Mark Caswell Assistant Medical Director

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  1. Dealing with the legacy- a collaborative approach Dr Mark Caswell Assistant Medical Director

  2. Historical background • Bristol Royal Infirmary June 1998 • Prof Anderson Sept 1999 • Organ retention scandal

  3. Early Parent Involvement • Post-mortem consent workshops • Spring 2000 • 40+ families invited • Affected by organ retention • Validity of consent • Removal vs retention • Role of HM Coroner • Revised PM consent process • Custom designed documentation

  4. Ongoing parent involvement • 4500+ enquiries • Serious Incident Team • Early/multiple releases • Consultant meetings with families • Clinical issues • Continuing bereavement • Explanation of PM process • Redfern report Jan 2001

  5. Development of Bereavement Care • 2002- Bereavement Care coordinator • Bereavement Care Pathway • Multi-agency involvement • Bereavement Partnership Group • Lay membership • Alder Centre • PITY II

  6. Unidentifiable babies project 2003-04 • 1000 unidentifiable cases • Multi-agency group • Retained Organs Commission • PITY II • University of Liverpool • Alder Hey • Liverpool City Council • HM Coroner • Bishop of Liverpool • Funeral directors

  7. Unidentifiable babies project • No cremation • Individual caskets • Burial • Pastoral involvement • Remembrance service • Memorial garden

  8. Dealing with the legacy • 10,000+ cases • Human Tissue Authority moratorium • Lifted July 2006 • 12m planning period • Joint Steering Group • Lay involvement • Prev PITY II • Bereaved parent • PCT representative • University of Liverpool

  9. Project for Respectful Disposal • HTA Code of Practice • Reflect the babies project • Burial in communal graves • Pastoral input • Revalidation of database • Maintenance of records • Project team • Bereavement care • Data management • Pathology • Internment • Communication • Media • HTA • RCPath • 6m to allow enquiries • 250 enquiries • 130 new

  10. Ongoing Issues • Definition of “unclaimed” material • Respecting families expressed wishes • Revised cardiac collection • Further organ/tissue storage/disposal Thank you

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