Date: 02 July 2019
A mum-to-be who is taking part in diabetes research has welcomed a major rise in the number of participants in Buckinghamshire NHS studies.
Charlene Absi, 33, is testing new insulin, monitoring her blood pressure and will have her baby screened for type 1 diabetes risk at Wycombe Hospital, High Wycombe.
The High Wycombe resident was “delighted” that there were more than 6,000 participants in county NHS studies supported by the National Institute for Health Research (NIHR) in 2018/19, almost 2,000 more than the previous year.
Mrs Absi, seven months pregnant with her first child, said: “I think the more people who get involved in research the better because we’re helping future generations tackle big health issues.”
She was diagnosed aged 20 with type 1 diabetes, where the body loses the ability to produce insulin, which controls the amount of glucose in the blood and causes their levels to become too high. This can cause serious long-term health problems such as stroke.
Mrs Absi said: “It is my biggest fear that I will pass this disease on to my child and I will give anything for them not to have it and for them to just live a normal life.
“Having diabetes just means constant monitoring. You don’t get a day off, you can’t just do anything on a whim, everything you do has consequences with diabetes.
“It was difficult when I was first diagnosed because I didn’t realise how sugary a lot of drinks were and I had to constantly check what I had. I also have to think about which fruits I will eat, as some will have a massive impact on my sugars whereas others won’t.”
Mrs Absi, who injects insulin four to eight times a day, said: “When I was diagnosed I had a phobia of needles, so that was pretty horrifying. It took me a very long time to come to terms with that.
“When I first found out I was pregnant, I visited the diabetes clinic at my hospital, where my doctor asked if I wanted to take part in a trial and I said ‘yes’ because the type of insulin they were studying could have better results than the type I was already on.”
Mrs Absi volunteered for the EXPECT study, which is looking at which insulin is most effective at controlling blood sugar levels in pregnant women with type 1 diabetes. Women on the study are given either insulin degludec or insulin detemir, to compare the two. Neither participants nor researchers are told which they will receive, to avoid bias.
The BUMP study is looking at whether giving women a blood pressure monitor to use at home can help early detection of pre-eclampsia, which causes high blood pressure and protein in the urine and can be life threatening for the woman and baby if left untreated.
Mrs Absi had her blood pressure taken in hospital so she could be compared to those who did it at home.
The INGR1D study will involve a sample of her baby’s blood - already collected from newborns for screening - being tested for genetic risk of type 1 diabetes, with the mother’s consent.
About one percent of children will have genes which put them at a high risk of type 1 diabetes. Those who have the genes are offered another trial, to see if giving infants daily doses of insulin powder can them from developing the condition.
Mrs Absi said: “I’d 100 percent recommend taking part in research to anyone. To have someone just checking in on you on top of your normal care is amazing. I’ve never been so well looked after and I’d love to stay in research for the rest of my life.”
Figures released today show an increase in the number of participants in NIHR-supported research in 2018/19. At Buckinghamshire Healthcare NHS Trust, which runs six hospitals including Wycombe Hospital, 5,386 participants were recruited to 83 NIHR-supported studies in 2018/19, compared to 4,024 participants to 79 studies the previous year.
A further 611 participants were involved in NIHR-supported studies in Buckinghamshire’s community settings such as GP practices, compared to 311 the previous year.
Oxford Health NHS Foundation Trust recruited 2,891 participants to 61 studies, compared to 2,242 participants to 60 studies the previous year and was ranked fourth among mental health trusts for the number of participants and studies. The trust provides physical, mental health and social care in Oxfordshire, Buckinghamshire, Wiltshire, Bath and North East Somerset.
Dr Tina Kenny, Medical Director for Buckinghamshire Healthcare NHS Trust, said: “We are continually working to increase the number of trials and opportunities for people in Buckinghamshire to be part of research. We would also like to thank the patients and families who have already offered their time and support for our trials.”
Bill Wells, Head of Research and Development at Oxford Health NHS Foundation Trust, said: “Oxford Health’s 2018/19 activity showed a positive change in participant recruitment with almost 30 percent more people being offered the opportunity to be involved in research than in 2017/18.”
Prof Belinda Lennox, Clinical Director for the NIHR Clinical Research Network Thames Valley and South Midlands, said: “We have had another fantastic year delivering research across our region. The hard work of the research nurses, consultants and other healthcare professionals we support has led to the number of participants in clinical research increasing in Buckinghamshire to more than 6,000. That is people from right across the region, in hospitals, community settings and GP practices.
“With more people taking part in research, we can make advances in medical research more rapidly than ever before, developing new treatments for the most serious, life threatening illnesses, and improving the care that our NHS can provide as a result.”
Patients are encouraged to ask their doctor about research opportunities and search for studies seeking volunteers at www.bepartofresearch.uk.