Meet physiotherapist Lesley Katchburian who cares for Cora in episode four of Paul O’Grady’s Little Heroes. Lesley, who is Lead Clinical Specialist Physiotherapist for Botulinum Toxin Services in Neurodisability at GOSH, explains why botulinum toxin can be helpful for children with cerebral palsy and why research is so important.
Botulinum toxin, also commonly referred to by one of its trade names ‘botox’, is used in the treatment of several childhood conditions including cerebral palsy and other illnesses that cause of muscle stiffness and pain. It is produced naturally by a bacteria and, when purified, can be used in tiny controlled doses to temporarily relax excessive contraction of the muscles.
GOSH was one of the first paediatric centres in the UK to use this treatment and since the 1990s we have been actively involved in research to monitor the effectiveness of botulinum toxin injections in children with neurological conditions. As with other treatments, we are continually monitoring its use and evaluating the benefits.
The right treatment - at the right time
“With the support of my colleagues in the Motor Disorders Service at GOSH, I’m now carrying out my PhD research to look at the long-term effects of botulinum toxin injections for children with cerebral palsy. We understand, to a certain extent, what the effect injections have on the muscles and their potential ability to temporarily relieve muscle stiffness and pain in the short term. But we don’t know as much about how this affects children in the longer term. For example - do the injections influence how much activity children can do? Does this help them join in with their friends and family? Does it have an impact on their quality of life? To help us answer these questions (and others) we carry out assessments with the children before they have their botulinum toxin treatment and then repeat these again at six weeks, six months and one year after their initial injections to see how the children are doing.
“So far we have recruited 63 children, including Cora, to take part in the study. Almost 90% of the patients who were eligible for the research have taken part, highlighting that patients really value the opportunity to get involved in research as well. We hope the results will help us tailor botulinum toxin treatment for individual children with specific disabilities; helping us provide the right treatment at the right time, for the right length of time.
My path to research
“As a physiotherapist, research has been embedded in my training since the undergraduate level. I was always interested in research but I also knew I wanted to practice clinically. Earlier on in my clinical career I gained a Masters degree exploring the effect of botulinum toxin treatment on improving children’s functional activity, further consolidating my passion for clinical research. However, in the past it was more difficult to follow both a clinical and a research career pathway.
“At GOSH we are fortunate to have a special unit – the Centre for Outcomes and Experience Research in Children’s Health, Illness and Disability (ORCHID) - which is committed to supporting nurses and Allied Health Professionals (AHPs) wishing to get involved in clinical research. I was privileged to be accepted onto the first ORCHID writing internship which was supported by the National Institute for Health Research (NIHR) GOSH Biomedical Research Centre.
“This opportunity gave me protected time to work on my application to the NIHR to apply for funding to carry out clinical research for patient benefit. My application was successful and in 2016 I became the first AHP at GOSH to be awarded an NIHR Clinical Doctoral Fellowship and am now over half-way through my five year part time PhD.
“On completion of my PhD I would love to continue clinical academic research at GOSH and together with the support of the Motor Disorders Team in Neurodisability hope to compare the results gained from our cohort of children with cerebral palsy at GOSH with other paediatric centres throughout the UK.
“Within the GOSH Physiotherapy team and the Motor Disorders Service there is a research culture embedded within day to day practice. Research is really important as it ensures that treatment is evidence based and helps guarantee that patients are getting the most up-to-date care.
“I don’t think research should be an add-on - it’s an integral part of clinical practice. It is extremely encouraging that there are more opportunities for AHPs and nurses to have the chance to get involved in clinical research both here at GOSH and throughout the UK.