Decision Report 201300143

Summary

Mrs C, who is an advice worker, complained on behalf of Mr and Mrs B about the care and treatment of their late son (Mr A). Mr A had an aggressive form of leukaemia (cancer of the white blood cells), and received a transplant of stem cells (cells made in the bone marrow, which can produce other cells). However, after the transplant it became apparent that the donor had developed an immunity to a virus called cytomegalovirus (CMV, a member of the herpes virus family) after he was accepted as a donor. This was evident in a blood test that the board received shortly before the transplant, but the change was not identified until after the transplant. Mr and Mrs B were concerned that this should have been identified, and that they were left not knowing what would have happened if it had been identified and acted on earlier.

Mr A became unwell after the transplant, and showed signs of very low levels of CMV in his blood, which was treated with medication. However, he had problems with his lungs, and his condition deteriorated further. Mr and Mrs B expressed concerns that this was worsened by the presence of CMV. His condition continued to deteriorate, despite a reduction in his level of CMV, and six weeks after his transplant, he died.

The board accepted that an error was made in not identifying the change in the donor's CMV status. However, there was no policy or procedure in place at the time to ensure this unusual event was identified. They also said that although this was discussed with the family at the time, the focus on his treatment meant that the discussions about CMV were not as detailed as they could have been.

As part of our investigation, we took independent advice from a specialist medical adviser, who said that the care and treatment given to Mr A was reasonable. She said that this was a most unusual problem. We noted that as there was no procedure in place at the time for checking for changes in blood tests, there was no failure of procedure, and also that as this was such a rare occurrence it was not surprising that this was not catered for. Our adviser also said that there was an urgent need for Mr A to have a transplant, and that the donor was still the most appropriate match, despite the change in his CMV status, as the risks associated with CMV were much less than those of not having a transplant at all. She said that Mr A's CMV level was reducing before his death, and that she was of the view his death was due to complications resulting from his transplant, and not the CMV. She noted that there was a lack of information in the records of discussions with the family in relation to their son's CMV status and the change in donor's status.

We did not uphold Mrs C's complaints, as we found that the board had followed their procedures in so far as they covered such a situation. We noted that they had now introduced procedures to ensure checks are made in future. We did consider whether Mr A in fact gave informed consent to the procedure as he did not know about the donor's status, but accepted our adviser’s view that it was very difficult to provide fully informed consent given all the variables involved. We also acknowledged that the reason that Mr A was not told about the change in status was because the team did not know about it, not because they did not tell him. Based on the advice we received, it appears that Mr A died of other complications, and the change in the donor's CMV donor status did not appear to have caused his death.

Recommendations

We recommended that the board:

• review the consent form and consider including reference to CMV risks and update the list of immunosuppressants used in the procedure; and
• remind staff of the need to ensure that appropriate records are kept of all discussions in relation to the giving of test results, particularly those where consent is required, and of subsequent meetings with family members.