Organ donation

The organ donation specialist nurse

When organ and tissue donation is being considered, a team of donation and transplant specialists are called in. The specialist nurse (or donor co-ordinator) is crucial in the organ donation process and was introduced to families when they were deciding whether to consent to organ donation. S/he answered as many of their questions about the process as possible and sometimes helped explain it to young children.
 
Most donor families we interviewed praised the information and support they’d been given by the specialist nurse while their relative was still in intensive care and after he or she had died. This included information on organ donation itself and where to find more support (see Support and where to find help). They also appreciated that the specialist nurse had a difficult, challenging job dealing daily with distressed or grieving families.  
Many people we talked to said the specialist nurse had been wonderful and that they received updates on the organ recipients on a regular basis. Several felt comfortable to contact the specialist nurse themselves for updates on the recipients’ welfare or for information and support. Many families were very grateful for having been given locks of their relative’s hair and handprints.
Some of those we interviewed were still in touch with the specialist nurse many years after their loved one’s death. They appreciated the nurse emailing or phoning them back to answer their queries whenever they’d left a message. A few people said the specialist nurse now felt more like a friend. Ann (Interview 10) said the nurse at her local hospital organised training days on organ donation for doctors and nurses and she had been invited to speak on several occasions. Others said that, with the help of the specialist nurse, they had become involved in raising awareness of organ donation by talking about their experiences in the local media (see Views on organ donation' donor families).
 
Some of the people we talked to said they would have liked more information from the specialist nurse. They had not been aware that their loved one’s organs could go to recipient’s much older than their relative and had initially found this disturbing. A few people mentioned that they would have liked more information about inquests and where to find support for children coping with bereavement (see Inquests and Coping with bereavement).
A few people felt they would have liked to receive a phone call from the specialist nurse a few weeks after the death of their loved one. Although they had been given a telephone number and been told to call if they needed to, they had felt uncomfortable doing so and believed that the nurse would be very busy with newly bereaved families and not have time for them. Some had become depressed and had found it impossible to ask for help.
Several people praised the first specialist nurse they’d had but, when she’d left and was replaced by a second, they felt they did not receive the same level of support. Haydn felt that the first nurse was good at communicating, answering his questions and giving him lots of information. However, the second nurse did not keep him informed about the recipients.
Many of the donor families we interviewed said they would have liked to receive regular updates on the recipients’ welfare but, after the first year, they did not receive any more news. Some had phoned the nurse themselves to find out more but felt strongly that donor families who would like updates should receive them automatically on an annual basis. When Catherine’s son died in 1995, she and Tom were given no information about the recipients and only later managed to find out more. They hoped that things had changed since then (see Contact with the recipients).

Last reviewed May 2016.

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