Date: 27 December 2017
Alison Macbeth Mitchell, 87, Oxford has kidney disease and is taking part in NHS research to test whether a new drug, provided by Roche Products Ltd, can be used to treat anaemia in kidney disease patients. Anaemia is a condition where those affected have too few blood cells. This can lead to a lack of oxygen capacity, making them feel run down. Patients with anaemia are currently given drugs to increase their blood cell count and it is hoped the study drug will have the same effect while also lasting for up to 10 times longer. Participants are randomly selected to receive either the study drug or an existing treatment and are not told which they are getting, so the two can be compared.
When were you diagnosed with kidney disease?
“In 2000. I felt rotten. It came as a shock to me. I’d been under supervision for kidney stones two years before and I feel like I’d been neglecting my kidney’s health by not having a follow-up check. I could have been dialysing earlier. I didn’t make any complaints though; it’s just one of these things that happen.”
Tell me about the kidney disease study you’ve taken part in
“I’ve just started this year, but I’ve been dialysing and being a research ‘guinea pig’ for kidney disease studies for 17 years. I always volunteer for research. I think it’s the only way of making medical progress.”
When was the first time you took part in an NHS research study?
“It was 1957.”
What made you want to take part in research?
“I lived in Edinburgh and there was a big research centre and I felt that as I had so much treatment from them it was my duty to volunteer.”
What sort of research have you taken part in?
“Over the years, I’ve taken part in gastrointestinal, ankylosing spondylitis and then kidneys. I have also agreed to donate my brain to dementia research in the future.”
What did those studies involve?
“Well, the gastrointestinal study was looking into digestion and intestinal contents and diet. The ankylosing spondylitis study was looking into whether there is a connection with the gut and the spine, and now I don’t think there is. The kidney studies have been about the reactions to dialysis and new drug treatments.”
What would you say to others about taking part in research?
“Our duty as being patients is to give something back to the NHS and to medicine in general. We need to help other people. I’d have more misgivings if there was a new medication involved but I’d still volunteer. So far, I’ve always volunteered when studies have been offered.”
How has your experience with research been?
“It has been fine. I’ve enjoyed the attention from the research nurses who visit me regularly. It makes a nice break from the boredom of dialysis.”
How has your experience with the NHS changed over the years?
“It’s improved a lot. Patients are far more involved nowadays than they used to be. Treatments are also explained to patients far more than they used to be.”