The British Polio Fellowship’s Post Polio Syndrome: A guide to management for health care professionals strongly recommends a multidisciplinary approach involving GPs amongst others when it comes to Post Polio Syndrome (PPS). Launched today, and authored by British Polio’s Expert Panel and edited by Dr Frances Quinn, the report also details several key areas where further research is required and demonstrates the need for extra funding to facilitate research into these topics.
“Due to the tremendous success in eradicating Polio here and worldwide, the condition is virtually unknown in the UK and as a result little training is given to health professionals,” said the editor of the guide, Dr Frances Quinn. “With the emergence of PPS, Polio survivors need informed medical care and this review aims to provide up to date knowledge and guidance.”
For the first time, the guide details the specific problems of those living with PPS in the UK so that the medical community has the best chance possible of recognising and managing PPS. It is hoped that the guide will also prove useful for British Polio members and indeed anyone with PPS.
“The symptoms of PPS are characterised by new weakness, fatigue and pain in muscles which may or may not have been previously affected by the Polio infection,” said Dr Robin Luff, Chair of The British Polio Fellowship Expert Panel. “One of our key recommendations is for a multidisciplinary approach involving GPs, physiotherapists and other allied health professionals. Yet there is a compelling case for further research into PPS”
A number of key evidence gaps are identified by the report’s authors. Longitudinal studies following the developmental course of PPS symptoms are needed to understand the role of muscle overuse to determine the correct amount of exercise for patients. Without clinical trials it is difficult to know how much exercise is beneficial as too little exercise can be equally harmful as doing too much and must be assessed on a case by case basis. Research into this area could lead to major advancements in the treatment of PPS.
“There is a pressing need for further research in order to develop a comprehensive strategy for dealing with PPS, and this new guide makes that clear,” said Ted Hill MBE, CEO of The British Polio Fellowship. “Last year our Support Service Team received 3,700 enquiries on PPS so the demand is out there and we know this is just the tip of the iceberg.”
The characteristics of fatigue in PPS are also not well understood and together with cold intolerance have arguably the greatest impact on quality of life. Currently, there is only a limited understanding of exacerbating factors, and there is not a widely agreed on definition of the different types of fatigue and this is where new research could make a big difference. Improved understanding of fatigue and cold intolerance would lead to real improvements in people’s lives.
“The reasons why those living with PPS are often cold intolerant are not widely understood, and so little can be done to resolve this painful symptom,” added Ted. “The more we know the more chance we have to at least to manage the symptoms better. “Overall, on a clinical level at least, we have only a fairly rudimentary understanding of PPS. While the issuing of this report is an important step forward, it is vital that The British Polio Fellowship gains as much funding as is possible to finance clinical trials and professional medical research. Only when we understand this condition much better at a clinical level, will we truly be able to help those living with it.”