Accessing mental health support at a time of need
Beauty therapist Sabina Saeed has suffered from severe kidney complications since she was a baby, but wasn’t offered psychological support until she was in her mid-thirties and going through dialysis.
With that in mind, she was eager to get involved with the focus group that helped inform Kidney Research UK’s new mental health report, ‘Addressing the mental health challenges of life with kidney disease: The case for change’.
Hoping to help others with her own experiences
A lot of kidney patients don’t have adequate support, so I hope that sharing my views on the mental health aspect of kidney disease was helpful,” says Sabina. “Personally, I feel really pleased to have been involved. People have even told me I’m brave to have shared my experiences.
“For me, hearing other patients' stories is reassuring, so I hope the discussions in the focus group that fed into the report will help others.”
Sabina, from east London, was just five months old when her infected right kidney was removed, but further complications meant she was in and out of hospital throughout her childhood. Looking back, she feels that speaking to a counsellor would have been hugely beneficial.
“I was bullied at school because of my condition and I felt so isolated and alone,” she says. “So, especially for young people with kidney problems, I think counselling would be a great help.”
During her teens, Sabina’s remaining kidney began to fail, so when she was 20 she had a transplant at London’s Middlesex Hospital after her mother agreed to donate one of hers.
Sadly, her new kidney’s function began to deteriorate over time and following a life-threatening seizure in 2016, she started dialysis while waiting for a new donor.
It was while undergoing dialysis three times a week at Tottenham Hale Kidney and Diabetes Centre that Sabina was offered specialist mental health support for the very first time.
“My doctors told me I needed someone to talk to because I’d get really down,” says Sabina, now 42. “I’d seen everyone around me moving on with their lives – marrying, holidaying, having children – but my life had just stopped. I thought, ‘Why me?’ It was tough.”
Physical and emotional wellbeing
The treatment took its toll on her physical and emotional wellbeing, so the support she received came at just the right time.
“Being on dialysis is exhausting,” says Sabina. “It brings you down. It’s heartbreaking. You don’t have options. You’re living through a machine, sometimes on a daily basis. When I first started dialysis, I couldn’t do anything afterwards – I was so tired I used to pass out.”
Sabina saw her psychologist once every three weeks for just over two years and says the sessions made her feel she was being less of a burden on her loved ones.
“Although my family are understanding, they can only do so much and I didn’t want to put pressure on them,” she says.
“Sometimes it’s easier to speak to a complete stranger. Seeing a therapist allowed me a chance to just talk and let it out – or on some days, cry my eyes out.”
The sessions stopped when she had her transplant in September 2019, by which time Sabina felt able to cope without her therapist’s support.
“Everyone differs, but I didn’t really feel I wanted or needed to see anyone after my transplant,” she says. “I no longer felt how I did when I was on dialysis, when I had all these toxins in my body and was having severe mood swings and tantrums. That’s when you really need to speak to somebody.”
Access to support for all
Although Sabina was content to rely on her own coping mechanisms post-transplant, she believes psychosocial support should be more readily available to kidney patients and their families.
“I think people should have access to counselling at all stages of kidney failure, not just when on dialysis, or going through a tough time,” she says. “I also think it’s important that the families of patients are offered counselling. They see us go through so much and it’s tough for them too.”
Sabina, who has Pakistani heritage, believes mental health support needs to be tailored to the individual.
“I know kidney patients from all different backgrounds and we all deal with it differently. It’s not really a cultural thing or a religious thing,” she says. “However, I think it would be helpful to offer support in the person’s preferred language, where possible, as some patients struggle with English.”
Hope for positive change
Sabina’s recovery from her second transplant, at the Royal Free in London, hasn’t been plain sailing. She developed pancreatitis and had to be readmitted soon after and she still suffers from recurring urinary infections.
Despite these setbacks, she is studying for a diploma in nutrition while also working as a beauty therapist three days a week. She says she is hopeful that her involvement in Kidney Research UK’s mental health report will benefit others who’ve been in a similar situation.
“I hope the report will trigger positive change,” she says. “The goal is to get more awareness of the psychological help that’s needed, so I’d love to see it bring about benefits for other kidney patients in future. It feels empowering to have been involved.”
Find out more
Read the full report which sets out the significant mental health needs of people living with chronic kidney disease and the recommendations that have been put forward to improve access to mental health care.
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