Should somebody have a wish to consider organ donation, they may have made that decision in their lifetime, they may have signed up to the organ donor register, carried a donor card around, or indeed had a conversation with their family members.

We still go through a formal consent process with the family, next of kin, whoever that is at the hospital at that time. And that varies very much from, it maybe a partner or a spouse; it may be a child or a parent depending on the age of the donor. It may well be a friend of longstanding who knows that person, but they are in the position to make that decision for them.

So we go through the formal paperwork, which involves talking about the different organs that they may be able to donate. There’s also some special tissues which can be donated as well, and we’ll go through that with them. And then, at that time, they’ll also discuss their options as to whether or not they would want to be included in any research programmes, because there are one or two special research programmes as well, which are again looking towards helping other people with regards to different programmes that are available.

How long would the whole process take, going through all the forms?

The actual filling in of the consent forms and the process is a two way conversation so I would say at a minimum it probably takes twenty minutes to do the paperwork, making sure that the family have all the absolutely necessary information. But depending on the questions that they have, we will give them as much time as they would require. And that can, at times, run into hours.

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.

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

My name is Teressa Tymkewycz and I’m a specialist nurse for organ donation. I’ve been doing this job for over 10 years now, so I’ve met many, many families who have been brave and generous enough to be able to consider organ donation.

Our role as a specialist nurse for organ donation involves me speaking with families and also the staff of intensive care units and other hospital areas. The hospital will alert us when there is someone where there is some decisions to be made at end of life.

So that will involve us going in and working with the local doctors and nurses and we will meet with these families to give them some information. And they will no doubt have some questions to ask us about what organ donation involves. So we spend some time with them going through that.

But then also we will, once we’ve agreed that they want to consent or we will support them if they decide not to go ahead and donate. And we will support them through what happens next, and that is us finding suitable recipients, matching the organs which again, depending on the age of the patient, because we have some elderly patients who are perhaps maybe 70, 80 years of age, so we will match up the organs appropriately by speaking to other specialists up and down the country.

And then we’ll also, they may be there with their loved one during the organ donation operation in that hospital, and then we’ll provide some follow up information either in person, by telephone or by letter through the later stages.

And your role is quite different to that of the nurses who work with the recipients isn’t it?

Our roles as specialist nurse for organ donation is quite different and separate from the other specialist nurses, that’s the recipient co-ordinators who very much look after the patients whilst they’re preparing to go on the waiting list for their organ transplant. And then also looking after them after they’ve had that transplant operation.

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.

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 will write at the anniversary of the death.

And thereafter we will invite them to contact us as and when they should like further follow up. It will be again the same basic information they receive but they may prefer to have it on a birthday or the anniversary. But there are many families who each year still want to hear from us and get a little bit of that information.

Yes. And what kind of updates can you give each year, about the recipients?

Yeah, the successful transplantation is wonderful and that many patients have the gift of many extra years of life, so even if