Proud reflections after six years as trustee
Proactive, creative and collaborative thinking lies at the heart of scientific study – and these are the key strengths of Kidney Research UK, says renal researcher and former trustee, Professor Jill Norman.
Jill is Professor of Experimental Nephrology, in the UCL Department of Renal Medicine at University College London, where she has built up a research programme investigating the cellular and molecular mechanisms that are responsible for progressive scarring (fibrosis) in the kidney.
A long-term relationship with the charity
Her six-year tenure as trustee for Kidney Research UK ended in September 2023, but her on-going relationship with the charity has spanned decades.
“I’ve been involved with the charity for a very long time,” says Jill, who has served on a number of committees related to renal research and education both in the charity and in the UK Kidney Association.
“As a renal scientist, I’d received grants from the charity, I’d served on the research grants committee, I’d done talks for them and hosted lab visits so I was very aware of the charity and, for me, it was a real privilege to be invited to be a trustee.
“Initially there was quite a lot to learn. Although I already had some experience of being a trustee for the Central London branch of the Samaritans it was still a pretty steep learning curve for me in terms of the size and breadth of Kidney Research UK. But we were given a great induction and lots of training opportunities.”
During her tenure, Jill sat on a number of committees and led a review that helped improve the way the board worked.
“I sat on the Research Strategy Committee which essentially asks the questions: ‘what are we funding, where are we funding it, are we funding the right range of things, is there anything on the horizon that’s coming that we need to be looking to fund?’ So that aligned well with my expertise.
When the Nominations and Governance Committee was set up (which assesses the balance of skills, knowledge, experience and diversity of the board, identifies any gaps and oversees the recruitment, selection and appointment of new trustees as well as ensuring proper governance), I was asked to be a member of that. This was really interesting because I learned a lot about how about those processes work,” says Jill.
“The charity has been very good at introducing appropriate procedures for things and in that guise, I was asked to lead a board effectiveness review, which looked at ways that it could be more effective, and that brought about a lot of change in the way the board works. Examples include streamlining the paperwork, introducing a structured process for project delivery and creating space in meetings for in-depth discussion of important topics.
“That was a great experience for me because I was completely out of my comfort zone. Fortunately I was lucky to work with two great and knowledgeable people and it gave me a real opportunity to learn things which were outside my area of expertise.”
Proud to support the 'patient voice'
One of the things Jill is most proud of is the charity’s drive to understand the ‘patient voice’ and ensure that the experiences and views of people with kidney disease are central to everything it does.
“When we formalised our research strategy there was a lot of discussion around priority and understanding the patient voice. And I think the charity has been amazing in increasing the presence of people living with kidney disease – in terms of their experiences, views and involvement in the drive to prevent disease and improve care and treatments,” says Jill.
“I think we saw how effective the charity could be during the Covid-19 pandemic when the charity was incredibly agile in supporting trials for kidney patients. And, more recently, with the way that we are beginning to make a big impact in policy with the launch of the mental health report and the health economics report which are really pushing kidney disease up the political and health agenda and getting the attention of people who can effect real change for patients.
“Together with the research that will ultimately make a difference to people’s lives and the charity’s active support for clinical trials, these are just a few of the activities that have made me feel really proud to be a part of the charity that’s delivering this.”
However, Jill believes one of the key challenges to change is getting advances implemented in healthcare services.
“We need to get kidney disease onto the agenda of people who can mandate for change” says Jill.
“It seems ironic that kidney disease is still not on the NHS priority list, but I think that’s a reflection of a lack of understanding of the disease because people see dialysis and transplantation as a cure rather than a treatment. People still don’t generally talk about it and, unlike some other illnesses, it’s not “dramatic” or visibly obvious, it’s just grindingly progressive.
“But Kidney Research UK is working hard to get kidney disease into the national consciousness. And I think one of the strengths of the charity is its determination to get out there and do it and talk about it.
“The charity knew it had to get involved with policy and took action. There are lots of examples like that, such as thinking of alternative and innovative ways of funding. All the teams have this great ability to think outside the box and to be very proactive and collaborative.
“Kidney Research UK is really good at co-working, partnering and engaging with people. Realising you can’t do everything on your own and that people are stronger together is a real strength which will stand the charity in good stead.”
What next for Jill?
What’s does life hold for Jill, following her time as one of our trustees? In addition to her full-time academic activity, Jill continues to chair the Strategic Advisory Board for our Alport Research Hub on behalf of Kidney Research UK.
She also has a strong interest in mental health and volunteers for a mental health charity as well as supporting initiatives around student mental health.
She also hopes to enrol her dog Teddy into the ‘Pets as Therapy’ scheme to support patients in hospital, children with behavioural difficulties in schools and older people in care homes.