We have quite clear guidelines as to what information that we give to families and, as I’ve said, we can offer them some follow up either by telephone or by letter. And the guidelines that we will give them some information, we will tell them the age of the patient approximately, we will tell them whether it’s a man or a woman, a child or an adult. We will also be able to tell them the length of time they’ve been on the waiting list and perhaps the length of time they’ve been on the dialysis treatment if its, for example, a kidney recipient. And we’ll be able to tell them what their condition report is, post transplant operation.
There are times when perhaps that recipient feels able to write and say thank you for the gift of life that they’ve been given, and they will then pass that letter onto their own specialist transplant nurse. They will then send that to our offices where the specialist nurses for organ donation work, and then we’ll forward it on.
We will forward on this information but just protecting the anonymity of both sides until a time they are both comfortable to share a little bit more information.
At times, those letters can go back and forth maybe as many as ten years really.
It is very rare for donor families and recipients to meet up.
If both donor families and the recipients would like to meet up, both will be supported by their own specialist and we do that through very much an agreed time and a safe environment for them.
So the nurses will probably be present when they decide to meet up?
I would feel that certainly one of the specialists would be there and, from my experiences, donor families do need a lot of support at that time, so I can’t imagine that we wouldn’t be there to support them through that.
Yeah. And you mentioned that, either by letter or by phone, you tell the donor families about the recipients age, whether it was male or female, that kind of information. Do you update them at any point later?
We will phone the donor family immediately post donation, if that’s what they would like and just tell them that yes their relative has been able to donate and which organs perhaps they have donated. We always follow that up with a written letter so that they actually remember the details and they’ve got something so that they can read over it. So we will write to them and the guidelines is within two weeks of the donation happening.
It may be that we then, every year, we will offer them the option of whether they would like updated information. We know from some families they don’t want that, so we ascertain that, but they always have our contact details. But I would say a lot of families either on the anniversary of the death or perhaps a birthday or another special day, that some of them will contact us and we will give them again that same basic information and an update.
So those are the guidelines, they don’t vary from hospital to hospital? Or can they vary?
The guidelines that the specialist nurses for organ donation follow are national guidelines, so that basic information is the same for all donor families. While some of the specialist nurses for transplantation, so the recipient co-ordinators, they will be employed by their own hospitals, so they will have their own hospital guidelines. But they are very much along the same lines of keeping information to a minimum and anonymous information.
Once we write to the families at the two week duration, we will then tell them that we wi