Mental health support and better access to their medical teams are just some of the recommendations being made following a survey of young kidney patients during the first Covid-19 lockdown.

Funded by Kidney Research UK and Kidney Care UK, the online survey, which details the lived experiences of young patients during the first wave of the outbreak, was initiated by the British Association of Paediatric Nephrology and the Renal Association, in collaboration with the University of Southampton.

In total, the study team heard from 197 parents of young kidney patients aged 0-18 years, and 118 children and young adults with kidney conditions, aged 12-30 years.

The survey was sent out by kidney teams, charities and kidney groups through advertisements and social media and was completed over three weeks during shielding in May 2020.

The survey findings have now been collated into a set of recommendations which will be made to healthcare teams across the country.

Dr Aisling McMahon, director of research, policy and innovation at Kidney Research UK said: “We already know that young patients face challenges with their education, getting a job and building relationships, so their voices needed to be heard. This survey throws a light on their lived experiences during an unprecedented global health crisis. We hope the recommendations made will be acted on where appropriate and that they help to improve the care and support available.”

Responses to the survey reflected the added fear and anxiety many kidney patients and their families have felt during the pandemic. Those shielding were particularly affected: young people said they felt more isolated than their peers, while parents of children said they worried about going outside, catching the virus and bringing it home, and the impact of shielding on their other children.

“As I am still working throughout the lockdown, I worry constantly about contracting the virus and bringing it home to my child. I work as a customer assistant for [a supermarket] so am in constant contact with other people.”

“I feel very locked out of the world, like an outsider, as I hear about everyone else going to the shops and going on walks shows the world is changing.”

Not all the findings were bad however, with one respondent saying: “The hospital atmosphere is very different very quiet, clearly taking appropriate procedures to prevent patients getting the virus”.

The recommendations to healthcare teams made as a result of the study include:

• Shared decision making with kidney teams based on up-to-date data
• Showing patients how clinics and dialysis units have been made safer
• Offering psychological support, promoting peer support groups, asking after wellbeing in consultations
• Offering video or telephone clinics
• Continuing to make positive changes even after the pandemic
• Advocating and speaking out for patients
• Trying to keep transplantation programmes open and safe in subsequent waves of the pandemic

This is the first survey of young kidney patients and their parents to be completed during the Covid-19 pandemic.