Grandmother with multiple sclerosis helping researchers prevent urine infections
A Buckinghamshire cake decorator who retired aged 60 due to multiple sclerosis (MS) is taking part in NHS research into preventing urine infections in people with spinal conditions.
Ann Hall, 75, is taking part in the PReSUTINeB study at Aylesbury’s Stoke Mandeville Hospital.
Multiple sclerosis is a condition where the immune system mistakenly attacks a healthy part of the body such as the brain or spinal cord. This can cause fatigue, difficulty walking and problems with balance and co-ordination.
Spinal conditions cause a loss of bladder control, which often leads to urinary tract infections (UTIs). These occur when bacteria enters the bladder, urethra or kidneys and can lead to a burning sensation when urinating, incontinence, fever, headaches and nausea.
People who have lost bladder control due to a spinal cord condition or injury are invited to take daily immunotherapy tablets for three months to see if this can prevent UTIs.
The Aylesbury resident, who was invited to take part in January 2018, said: “I found out about the study through the MS nurse at Stoke Mandeville Hospital, who referred me to a researcher.
“After having the study explained to me, I agreed to do it. The risk factor was minimal as the drug had already been tested and it was just a case of whether the drug suits people and does the trick.
“Unfortunately, losing control of the bladder is a very common part of MS, so I do suffer with UTIs. I was pleased to try and do something that would help with the UTIs and I haven’t had one since taking part.
She was diagnosed with MS in 1997 aged 54 and retired in 2003 as she began to frequently lose her balance and fall. She now uses a rollator walking frame.
Ms Hall said: “It didn’t trouble me for a long while, but as time went on I started to lose my balance, then walk with a stick and eventually I used a rollator because my balance is impaired and I’m ageing.
“I hope I don’t ever have to go in a wheelchair but I have had to hire a mobility scooter when going somewhere that involves lots of walking.
“You’ve got to pace yourself and have a different lifestyle. I work extremely hard to keep my business afloat for years – I used to work to the early hours of the morning while I was bringing up two children.
“I keep busy. I do arts and crafts sitting down. I make cards and I do artwork and make sugar flowers, which I learnt when I was a cake decorator.
“I’ve weathered a lot of storms like lots of people my age but I’ve got two lovely children and a beautiful granddaughter now and I try not to let it get me down.”
Antibiotics are used to treat UTIs however as patients are developing resistance to these, other treatments such as immunotherapy are being developed. Immunotherapy works by using parts of a person’s immune system to fight infections.
The study is led by Buckinghamshire Healthcare NHS Trust with funding and support from the National Institute for Health Research (NIHR) and charity Stoke Mandeville Spinal Research, which funds research into spinal cord injuries.
Ms Hall said of her decision to take part in the study: “I’ve had two or three UTIs and they do make you feel very ill all over your body. They’re almost undetectable until the last minute – you don’t realise you have one until you are poorly.
“They can be painful because you get a lot of burning and an uncomfortable tummy. They cause you to be ill in the rest of your body.
“I have to take enough pills as it is, so if this study keeps me from needing antibiotics for them, that would be great.”
Participants are given existing immunotherapy drug Uro-Vaxom or a placebo (dummy drug) to take daily before breakfast to compare the two. Neither the patient nor researchers are told which one is being taken to prevent bias.
Participants are asked to provide a urine sample at Stoke Mandeville Hospital after three and six months to test for UTIs.
Mr Maurizio Belci, the study’s lead investigator, said: “Antibiotics, which are used to prevent and treat UTIs, are becoming less effective as the bacteria that cause these infections are becoming more resistant to them.
“The PReSUTINeB study is looking at if an immunotherapy treatment made from the bacteria E. coli, which is the most common cause of UTIs, can help prevent these infections.
“If proven to be effective, this could have a significant impact on the health and quality of life of individuals who frequently suffer from UTIs.”
Charlotte Minoprio, Fundraising Manager for Stoke Mandeville Spinal Research, said: “We initiated this study as part of our mission to improve the quality of life for people living with spinal cord injury.
“We are hugely grateful to NIHR for its support and to our friends at Buckinghamshire Healthcare NHS Trust for working with us to deliver this important research into the prevention of recurrent urinary tract infections.”
Participating in health research helps develop new treatments, improve the NHS, public health and social care and save lives. Patients are encouraged to ask their doctor about research opportunities and view trials seeking volunteers at www.ukctg.nihr.ac.uk.
For more information on the PReSUTINeB study contact the project lead James Cooper on james.cooper9@nhs.net to 01296 418140 or visit lifeafterparalysis.com/presutineb.
