Managing mobility challenges in aging polio survivors
- The British Polio Fellowship
- Apr 7
- 3 min read
Polio survivors are aging and experiencing a range of health challenges. As they grow older or begin to experience early-onset frailty, walking often becomes more difficult, not simply due to pre-existing restrictions in movement but also because of factors such as weight gain, joint degeneration, pain, or post-polio syndrome (PPS). These complications significantly heighten their risk of falls, compounded by an already elevated risk of fractures.
Orthoses have always played a vital role in managing the treatment of polio survivors. Their primary purpose is to stabilise the joint and restrict its movement. The knee is a particularly critical joint for this group of patients.
Weakness in the muscles stabilising the knee often leads to compensatory walking strategies, which, over time, may harm bones, joints, and muscles. A common coping mechanism for polio survivors is to hyperextend the knee backwards when weight-bearing. But this will put strain on the knee joint and cause further pain and joint damage, making it unstable, walking unsafe and a need for regular medical follow-ups.
Today, this unique population who have been living with these disabilities for decades and often experience early-onset frailty, are still wearing the orthoses provided to them as young adults, yet they rely heavily on these outdated callipers and raised shoes.
Responding to frequent reports about delays in diagnosis, limited awareness of the late effects of polio and post-polio syndrome, inadequate care outside specialist centres and of poor local orthotic services and maintenance, the British Polio Fellowship (BPF) concluded it needed an Optimal Clinical Pathway.
Published in March 2024, the Pathway is endorsed by BAPO and other leading clinical organisations. It provides clear guidance on delivering high-quality healthcare tailored to the needs of the polio community. The Pathway serves as a flexible guide, designed to be adapted to individual needs and implemented locally or regionally based on population requirements.
OPTIMAL CARE PATHWAY: www.britishpolio.org.uk/optimal-clinical-pathway
With the Pathway now launched, the British Polio Fellowship (BPF)—a charity dedicated to supporting and empowering polio survivors to live independently—is focused on sharing information about the condition with healthcare professionals, raising awareness of the Pathway, and prioritising the needs of those affected.
Polio may be considered to have been eradicated from the UK, but the Fellowship still estimates at least 47,000 people in the UK live with life-long effects of polio. Yet, the true number is likely much higher, because many cases were never officially documented, or records were lost. Also unrecorded is the growing cohort of polio survivors living in the UK who contracted the disease abroad. This is a much younger population with diverse needs.
To raise awareness of its Pathway and highlight the issues in orthotics services for this neglected community, the BPF invited the BAPO Executive Committee to join the charity at an event in Westminster. Pam Coulton, Vice Chair of BAPO, kindly accepted the invitation and last October, came along to a drop-in event to engage with MPs. The event, sponsored by Liz Twist, MP for Blaydon and Consett, saw strong Parliamentary support and MPs pledged to write to their local Integrated Care Boards or Health Boards, urging their executives to meet with the Fellowship and discuss the Pathway initiative.
Pam has also been exploring opportunities for further collaboration with the BPF, including joint participation at events and speaking engagements at conferences, seminars, and workshops. More immediately, the BPF will be producing educational content such as videos and regular news articles for BAPOConnect. This may be the Fellowship’s first news article for BAPOConnect, but it’s excited to explore and discuss other polio related topics in the future.
WHAT IS POLIO?
Polio is a neuromuscular condition that has been eradicated in the UK. Following the initial highly contagious poliovirus infection, typically contracted during childhood, many recovered and regained movement over the following weeks and months.
Some young people, however, were left with permanent disability and faced lifelong complications including weakened or paralysed muscles, mobility challenges, and impaired skeletal development.
WHAT IS THE LATE EFFECTS OF POLIO?
Over time, polio survivors are seeing physical changes as their polio-affected bodies age. Symptoms such as weakness, fatigue, and pain have been gradually reappearing, typically in middle age. Collectively, these and other new symptoms are referred to as the late effects of polio. The new symptoms result from "wear and tear" on the body. A key contributing factor has been the lifelong reliance on compensatory movements, such as limping, which has altered posture and placed undue strain and premature wear on certain body structures e.g. hips.
WHAT IS POST-POLIO SYNDROME (PPS)?
As polio survivors age further, new symptoms are emerging and approximately 60% are likely to develop post-polio syndrome. This progressive condition is marked by new muscle weakness, further muscle atrophy, increased pain, debilitating fatigue, and, in some cases, breathing or swallowing difficulties, sleep issues and sensitivity to temperatures, all adding to the complexity of their care needs.