Organ donation

Support and where to find help

Donor families we talked to received support from various sources, formal and informal, including family, friends, neighbours, colleagues, support groups, bereavement counselling and their religion or spirituality. Some gained support by reading about the experiences of other donor families on the internet, saying it had helped to know they were not alone and that their feelings were normal.
Many people gained comfort from people visiting them and from hearing stories about their relative.
One woman said that, a year after her son’s death, she was given some Reiki healing. She was impressed by its philosophy - of living in a positive way and in the present moment, rather than using energy on something that can’t be changed. It helped her so much that she decided to become a practitioner. Others said they gained support from their religion or spirituality.
Some people we interviewed sought professional counselling, either through their GP, work or a support organisation to help them understand how they were feeling and coping.
The organ donation specialist nurse often told families about the Donor Family Network (DFN), a charity that supports donor families. Most of those we spoke to found talking to someone who had been through something similar or attending DFN events very helpful. The events were an occasion to meet other donor families as well as recipients. When her son died, Sue wanted to talk to other people who had had a similar experience and joined the DFN and Compassionate Friends. She later became a DFN trustee and also started hosting a local group for bereaved parents.
Most people we interviewed praised the support they received from support groups, though one man found them less helpful than he’d hoped when they didn’t send the leaflets he’d asked for on several occasions. Eunice said she would have liked to join a local support group for donor families but there were none in her area.
 
Some people we talked to said they would have liked more support in the early days but, at the time, they had not known where to turn. A few said that, although they did receive counselling, they would have liked it sooner because the first few months were so difficult.
 
One woman said she would have liked more support for her husband, who found it difficult to talk about their son’s death and became depressed. Others would have liked support for their children, including counselling, but it had not been available in their area.
Some people noted that, although people outside the family were empathetic, many did not know what to say. Several mentioned that people had crossed the road or avoided them because they were unsure what to say or how to react to them. A few people said that sometimes people were unintentionally insensitive with their comments and this was difficult because they were feeling very vulnerable at the time (see Coping with bereavement).
 
Where to find help  
 
Donor families we interviewed found different organisations helpful and several wished they’d been given a list of relevant charities when they left the hospital.
These support groups can be found in our 'Resources section'.

Last reviewed May 2016.

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