Whole family experiences mental health impact with kidney disease
Sally Woodward is a member of Kidney Research UK’s lay advisory group and played a key role in the focus group that helped inform the charity’s mental health report, ‘Addressing the mental health challenges of life with kidney disease: The case for change’, which explores the mental health needs of people living with chronic kidney disease.
Ever since her daughter Helen was four years old, Sally Woodward has known she would one day need a kidney transplant. It was witnessing the psychological impact kidney disease had on Helen, and on the wider family, that motivated Sally to get involved.
“People get more support with the physical challenges of kidney disease than with their emotional wellbeing, so I was pleased the charity was trying to look at the broader picture,” says Sally. “Those on the lay advisory group are passionate and represent a broad range of experiences and perspectives, so I think it was very useful.”
Sally also took part in last year’s e-action, encouraging Kidney Research UK supporters to contact their MPs to raise awareness of the mental health needs of kidney patients.
“This should be on the government's agenda, but it's not,” she says. “So last April members of the lay advisory group reached out to their network of supporters, encouraging them to lobby their MPs. I received a nice response from my MP, Nickie Aiken, who said she was interested to learn more. Several other MPs also replied, so I think it was a really positive initiative.”
Adjusting to fact both children would need surgery
While Sally always knew Helen would need a transplant, she was less prepared for the fact that her son, Henry, would end up being Helen’s donor.
Worrying about Helen needing a life-saving operation had been traumatic enough, but having to then adjust to the fact that both her children would need a major surgery exacerbated her fears further.
“Mum had been told I’d need a transplant when I was little, but she definitely hadn’t envisaged my brother being involved, so it was always going to be difficult for her,” says Helen, 26, now a junior doctor. “It’s been a very intense and stressful time.”
Henry, 27, stepped up after both Helen’s parents and a cousin were medically ruled out as donors. The transplant went ahead on 15 February this year and was, thankfully, a success.
“Immediately, post-op, I had so much more energy,” says Helen. “I feel so different now to how I felt before the transplant. People have said I look more healthy and that my eyes have more of a sparkle.”
But in the difficult years building up to the transplant, both Helen and Sally feel they would have benefitted from greater emotional and social support.
Sally says, “The only counselling ever offered to me was at the very last stage of the testing process, to see if I was a suitable donor. But that was more to make sure I was doing it voluntarily and under no undue pressure. It would have been nice to have the option of counselling – even over the phone – at key moments, especially later when I was told I could no longer be a donor and when Helen’s father was also ruled out as not a match.
“Being told you can’t save your daughter has a huge impact on your mental wellbeing. It was seriously upsetting for him.”
The need for support
But it was after being told Helen had failing kidneys as a child that Sally felt most in need of support.
“The time I really needed help was when Helen was first diagnosed,” she remembers. “I was on the floor at that point and there was absolutely no counselling – or any form of support – offered. I had to organise some private sessions myself and found them incredibly helpful. I was fortunate I could afford to do this, as not everyone can.”
Helen was offered no psychological support until the months before her transplant.
She says, “I was transferred to the young adult service aged 16, but their counselling services weren’t promoted, so I went through that whole period not knowing it was something I could ask for.”
Sally believes it could have brought Helen comfort at a time when her kidney function was beginning to deteriorate.
“It suddenly hit home that she couldn't live her life as freely as some of her peers and that was hard,” she says. “And although Helen would talk to me about her medical conditions, she wouldn’t talk about her emotional feelings as she didn’t want to upset me. This is why renal clinicians need to talk about things other than blood results and diet. The crazy thing is, there actually was a counsellor available – but nobody told her.”
Emotional support for patients and families is lacking
While studying medicine, Helen’s kidney function dropped further, so when she heard free counselling was available via her university, she signed up.
“It wasn’t something I ever considered going to the renal team for, which seems really bizarre looking back on it now,” she says.
In fact, it wasn’t until last year that Helen finally saw a psychologist who worked specifically with kidney patients.
“In April 2022, when my kidney function level dropped again I saw a dialysis nurse. She was the first person to directly ask, ‘How’s your mood? How’ve you found this change?’” says Helen. “I told her I was struggling, because I’d gone for so long without needing support. That’s when she referred me to a renal-specific psychologist, which was so helpful. I had six sessions and by the time it came to the transplant, I felt much better prepared.”
Although Henry wasn’t offered specific counselling, his live donor coordinator did make a point of discussing how he was feeling throughout the process, which he found helpful. Sally reflects that this approach could be more widely practised as part of regular monitoring of kidney patients.
Although Sally is thrilled her daughter is making a steady recovery – and Henry was back at work within two weeks – she says psychological and emotional support for kidney patients and their families is lacking.
“Just because your child is an adult doesn’t mean you’re not affected,” she points out. “Irrespective of age, the impact on me would have been the same. I’d like to see more mental health support for kidney donors, would-be donors, and parents of adult patients as well as better access to support for patients.”
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