“Joined up thinking would have really helped my mental health during my transplant journey”
Alison Lawrence is on the road to recovery following a successful kidney transplant after three years on dialysis. She was among the group of kidney patients who took part in focus groups which helped to inform our new report, Addressing the mental health challenges of life with kidney disease: The case for change.
In this extract from the report, Ali’s experience shows how people living with kidney disease are often left shouldering the burden of joining up the medical and emotional aspects of their care.
A snapshot of Ali's experience
“I had an interesting experience with the living donor team at my renal unit. Me and my husband went into the UK Living Kidney Sharing Scheme for the first time a couple of months ago, and got a call to say that we’d been matched. And we were like, wow, ok, that’s amazing, because it usually takes a couple of tries before you get a match, and they were talking about what would have to happen, which would be a call that me and my husband would have with the Human Tissue Authority to make sure that no one was being pressurised into donating. That went ahead and the HTA were happy for us to be involved in the match. And then, basically, radio silence and it felt like the only time we heard from the Living Donor team was when we contacted them.
“About two months after originally getting the match, we asked the renal team at my hospital to follow up with the Living Donor team on our behalf, which they did. They came back later that day and they said, ‘Oh, sorry, it’ll be next month.’ Then about three days later we received a call to say that unfortunately one of the other recipients was no longer well enough to have an operation so the match couldn’t go ahead.
“So we went from potentially having a transplant this year to…well, that was quite tough. And I’ve noticed there’s not much joined-up thinking. You have to be your own advocate and tell everybody. You know, I would’ve liked for the living donor team to have contacted Amy, who’s my renal counsellor, to say, ‘Oh, Amy, just to let you know Ali’s found out that she’s not going to have this transplant that she’s been hoping for for the last couple of months and that she’s put her life on hold for. Maybe, you know, you could you give her a call?’
“It would’ve been really lovely the day after I found out that I wasn’t going to have a transplant for Amy to have phoned me and said, ‘Hi Ali, I’ve heard what’s happened. Do you want to talk now? Do you want to come and see me? Shall we bring forward our next session?’ That would’ve really helped.”
Find out more
You can find out more and read our new report here: www.kidneyresearchukorg/mental-health-report
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