Meeting the IgAN community: patient information days

In September 2023, the University of Leicester hosted the ninth IgA nephropathy (IgAN) patient information day. The event allowed patients and families a chance to ask questions and to meet other people living with the disease.

The Leicester IgAN Research Group patient information day, funded by Kidney Care UK’s Hospital Grants programme and Kidney Research UK, consisted of talks and panels from experts and healthcare professionals, a tour of the new laboratories including demonstrations by members of the research team, and an opportunity for patients to share their experiences with others.

Many of the talks and panels, along with patient interviews, were recorded and can be accessed on the Leicester IgA Nephropathy Research Group YouTube channel.

Sharing reliable information about IgAN

“One of the key reasons we hosted the day was to give patients the chance to have their questions answered and to gather up-to-date and trustworthy information,” explains Dr Róisín Thomas, Laboratory Manager for the IgA Nephropathy Research Group at the University of Leicester and one of the organisers. “A lot of information online is difficult to understand, misleading, or entirely wrong. We wanted to be able to give correct information from experts in the field of IgAN.”

The team ensured there were as many opportunities as possible for patients to speak to consultants, kidney doctors, and healthcare professionals. “During appointments, people sometimes have only ten minutes to talk to their consultant,” continues Dr Róisín Thomas. “This often means they won’t have understood everything, or they’ll have forgotten to ask crucial questions. The patient information day was essential in giving patients proper time to speak with consultants and experts.”

It was really interesting to learn about new drug treatments and how IgAN is being studied.

The expert panels also offered the opportunity for attendees to receive information on clinical trials and the future of medicine and IgAN. “The intent was to give hope, as much as anything,” says Dr Róisín. “There has historically been very little in the way of medicine and drugs to treat IgAN disease. At the patient information day, we were able to inform attendees about the latest clinical trials, including information about a targeted-release form of budesonide, which is the first drug specifically designed to treat IgA nephropathy. Research staff also gave talks and tours of the research labs, showcasing how they conduct research into IgAN and explaining how clinical trials work.

Fostering a sense of community

Attendees were encouraged to ask questions throughout the day, both during and outside talks and panels. Round table activities also gave patients and families a chance to share experiences within small groups and then put their questions to an expert panel.

“The patients enjoyed the day immensely and the feedback from them was overwhelmingly positive,” says Dr Róisín. “There was a real sense that it had had not only given them information but also hope for the future and a sense of community, and the staff involved in the day all really enjoyed interacting with the attendees. This is not something that the lab staff usually get to do, and they found it so meaningful.

“I think the thing that resonated the most with me was one patient I spoke to who said that he no longer felt alone in living with IgAN. He said that he had never met anyone with condition in his life and being able to speak with so many other people with IgAN was a highlight. That sent a shiver down my spine. It is exactly why we do the days; it all makes it so worthwhile.”

The excellent and concise information provided me with lots of opportunity for questions, and the opportunity to meet others with IgAN has been so beneficial.

Patient information days: supported by Kidney Care UK

Kidney Care UK’s Hospital Grants programme has invested over £9.5million to improve patient care and services across the UK in the last 10 years. Part of the programme funding centres on patient information and open days, like the IgAN day at Leicester University.

“The grant from Kidney Care UK made it possible to put on this event,” says Dr Róisín. “We couldn’t have done it without the charity’s support; we wouldn’t have had the money. The funding helped pay for food, for people to attend from across the UK, for video production so we could film the talks and interviews for those unable to attend.”

In the past 5 years, Kidney Care UK have given almost £30,000 in funding to patient information days. These events allow education and information to go both ways, from health professionals to patients, but also from patients to health professionals.

“We’re massively grateful to Kidney Care UK,” says Dr Róisín. “We’re hoping to host days in Wales in 2024, and then in Northern Ireland and Scotland in the future. We have people on our IgAN Facebook group across the UK and we want to ensure we reach as many people in person as possible.”

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