New lead of our lay advisory group promises an exciting future
Miranda Scanlon has recently taken up the reins as the new lead of Kidney Research UK’s lay advisory group. Speaking from her home as lockdown eases she’s conscious the path ahead for her and other kidney patients is still uncertain. “As transplant patients we’ve been advised that we still have to be very cautious while we wait for new research to tell us if we are as safe as other vaccinated people,” she says.
Living with polycystic kidney disease (PKD) and polycystic liver disease (PLD) and still officially vulnerable, in some ways it’s a strange time to be taking on a new volunteer role. But Miranda is embracing the challenge of the lay advisory group.
Miranda was 18 when her mother was diagnosed with PKD. A scan confirmed Miranda had also inherited the condition and had cysts on her kidneys. The condition started to gradually impact in her early 30s, getting progressively worse until at 42, she had a transplant with a kidney donated by her sister.
In this time she completed a doctorate in genetics, and then enjoyed a varied career in accountancy, then in childbirth education, before setting up a website called BirthChoiceUK, helping people choose where to have their baby. She became involved in consultations and advising on women’s experiences in maternity care followed by a return to academia and a specialisation in public and patient involvement in research. An impressive CV by any measure!
This combination of professional and personal experience puts Miranda in a unique position. She is brimming with enthusiasm for helping drive the charity’s renewed commitment to enabling patient involvement and engagement in research.
“I’m feeling very positive about what lies ahead and the impact we can make,” she says.
Enhanced role for the lay advisory group
The lay advisory group is set to become even more influential with members joining external networks and taking an active role in consultations. But Miranda doesn’t envisage being the sole figurehead for the patient voice. “My role isn’t to represent all kidney patients, far from it,” she says. “It’s about creating a culture where a diverse and inclusive group of patients can have their say, shaping research that makes a difference.”
She is very keen that our patient involvement work maximises impact. Speaking from personal experience, she says: “Kidney patient volunteers are a really precious resource. A lot have times of being unwell. We might only have their help for a period of time, then they might drop off the radar, then they might come back. So we have to be really aware if we’re asking kidney patients to contribute, that we make what they do count.”
Miranda has done the same herself, having taken a step back when her PKD worsened. “In 2004 when I began to feel ill, I gradually withdrew from my work commitments” she explains. Fortunately, her transplant in 2006 was a success and she was able to get back to work soon after surgery. “I was lucky - it was transformative!” she says, recalling the extraordinary ‘wellness’ she felt after the operation. “I remember looking in the mirror the day after my surgery and seeing that my face had already changed to a much healthier colour!”
Having her polycystic, non-functioning kidneys removed 18 months later was a harder recovery and she now has a very large polycystic liver. “My liver function is completely fine, but it takes up most of my abdomen, exerting pressure on various other parts of my body. There’s also an impact on body image that goes with PLD as well, which affects the kind of clothes I feel comfortable wearing.”
Patient experiences are completely valid
Miranda’s faith in the value of talking about her lived experience has grown through the years.
“I had postnatal depression after my second daughter was born and the antenatal teacher training really helped. It made me feel that my experiences as a mother were very valuable and that I could use them to help other people as they became parents.”
As her kidney disease developed, Miranda’s patient involvement activities did too. She became a lay representative on two NICE guidelines; setting standards for patient experience and on chronic kidney disease.
“It can be challenging! Sometimes you’re the only person in the room who actually knows what it’s like to live with a condition on a day to day basis,” she says, recalling speaking up against a suggestion for everyone to fast before a blood test for kidney function, because it was easier than explaining they couldn’t eat cooked meat. “I told them we needed our cornflakes and toast before waiting hours for a blood test – and then they got it!”
She is keen to encourage that same confidence in other members of the lay advisory group, to help them realise that what they have to say as patients is vital information for a room full of researchers or clinicians.
The time to hear patient voices is now
And there’s never been a more important time to speak up as patients, as restrictions ease despite the early indications that people on immunosuppressants aren’t as well protected by vaccination.
“I’m worried that the world’s going to go back to normal and kidney patients may be excluded, simply because it won’t be safe for them to take part,” Miranda says.
However, digital advances will help ensure that kidney patients will be front and centre in our work. Meetings and collaboration will continue online for the moment; not being wedded to a physical format will be hugely beneficial. “I think this will help us have a more dynamic, diverse and cohesive group and being virtual will make it more accessible,” she says.
“I’m really excited about the charity’s fresh approach to patient involvement and engagement, driven by the team at Kidney Research UK and my predecessor, Phil Smith. The scope of the work is massive and it will take time to deliver. But I’m incredibly positive about how we’re going to work together.”
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