Organ donation

I think we were lucky in the point of fact that we had some very good friends with us at the hospital who came to [place name]. And then for the five days that Kirstie was in between the two hospitals, there was certain people that visited every day, that spent the time with us, and have been our support.

We made friends, there was Kirstie’s General Manager at work. I’d met him a couple of times. He came to the hospital every day. Now he’s one of our closest friends. We’ve said that if we didn’t get anything else out of Kirstie dying we got a close knit friendship of people who we meet up twice a year, we meet up or perhaps three times a year in actual fact.

We meet up on Kirstie’s birthday every year, we have a meal. We meet up on the anniversary of her, or the first Sunday after her anniversary of dying, and also her funeral was 28th December. And Kirstie worked for a large restaurant chain and, every year on the 28th December, that restaurant chain pay for us to have a gathering of Kirstie’s friends that she worked with, which is lovely.

And those people turn up every year. And there’s about twenty one of us I think go out to dinner and we all have Kirstie in common, which is lovely. So because we have that group of friends I suppose we haven’t looked elsewhere for support. We’ve supported each other.
 

Through my work, I was able to have some counselling sessions.

Through your actual employer?

Through my work. Yeah, through my employer. Yeah, face to face sessions. I had five of those.

And I think that pretty much, the five were enough. They don’t solve, counselling doesn’t solve the problems, but I think it just gets you to understand why you might be reacting to certain things. I had a big thing about John’s death certificate. I’d got several copies, so one copy was the one that was going off in the post, and what have you.

And I sent it off to the insurance company, one of the insurance companies, and it was pristine and when it came back it was folded in half, had a staple mark in it. And I lost it, completely lost it.

And the counsellor said to me that she thinks that was because that’s my final document or, I can’t remember how she described it now, but it was that final piece of official paperwork, documentation whatever, that related to John. That obviously is very, very important to me, or to anybody in the same circumstances, but yeah I had quite an adverse reaction to the fact that it had come back, because it was disrespectful.

And throughout everything that I’ve had to deal with and people that I’ve dealt with, everybody has shown me absolute consideration, courtesy, understanding, support. You know, I have been extremely lucky from that point of view. But the counselling definitely just enables you, I think, to understand why you might be feeling a certain way. Why things, certain things will trigger you and other things don’t. So it was helpful.

I’ve got a tremendous organisation that I’m now joined to. It’s not to do with organ donation but it’s to do with being widowed and young, which is the WAY Foundation. And they have been a tremendous lifeline for me and for [my son], because we meet with widows with children. And there’s lots of events that go on, it’s nationwide.

But it is a tremendous organisation who are there to help and support and for you to just to know that you’re not alone. And that actually the feelings that you have aren’t strange, aren’t unusual. And the support mechanisms that’s there is absolutely second to none.
 

For me it was quite important that I actually got to know other people in a similar situation. I asked the co-ordinator [specialist nurse] if there was any sort of organisation that dealt with donor families. And she put me in touch with the Donor Family Network, who supported us in the initial months and years even, until we became a trustee.

I also very quickly got involved in an organisation for bereaved parents. Which in the same way helped because I found local bereaved parents who I actually still am very, very friendly with.

Yeah. You decided to do this very, very quickly?

I decided very quickly that I needed to have contact with people who were in a similar situation to myself. Whilst at the same time I also acknowledged very quickly that one day I wanted to actually use this experience in some sort of positive way. I just didn’t know how.

And it wasn’t until we became trustees of the Donor Family Network that I realised that’s what I needed to do. I needed to use my experience of a few years to hopefully help by talking to people who are very recently bereaved. Who were still at that raw stage and thinking, “I don’t know what to do. Am I going mad?”

Through the counselling I joined a local bereaved parents support group. And over a period of time, we lost the use of the facility, where we were holding it. So we now actually host it at my house. But it’s actually part of another organisation called the Compassionate Friends.

The Compassionate Friends is an organisation that supports bereaved parents and siblings and grandparents. And we actually have support groups all over the country that are run for bereaved parents. There is also a help line which is manned 365 days a year, and I man one shift a week on that. Where we talk to bereaved parents who obviously are not always organ donors, but sometimes are. And we can pass details to them of support groups in their area.