Polio survivors from across the North of England came together to be involved in a regional launch of the British Polio Fellowship’s clinical pathway for polio survivors.
More than 40 polio survivors attended a regional launch of an Optimal Clinical Pathway for polio survivors (including the late effects of polio and post-polio syndrome) on Thursday 18 July at Walkergate Park Hospital in Newcastle upon Tyne.
The event was introduced by Adele Evitt, Chair of the British Polio Fellowship (BPF) Newcastle and District Branch and Chair of the BPF Northern Region, and Katy Dashwood, Senior Physiotherapist and member of the Regional Disability Team in Cumbria for the Northumberland, Tyne and Wear NHS Foundation Trust.
The audience were informed the BPF pathway has been shared with clinicians and healthcare professionals across the UK to raise awareness of the Late Effects of Polio (LEoP) and Post-Polio Syndrome (PPS), and to provide clear guidance on what a polio survivor needs in order to reach a diagnosis and receive appropriate care and treatment.
Kripen Dhrona, Chief Executive, Frances Quinn, Trustee and Carol Levin, Communications and Information Manager from the BPF talked about the pathway and highlighted some of the reasons why it was needed and how it was developed. They also mentioned the endorsements and approvals the pathway had achieved from leading medical organisations such as The Association of British Neurologists (ABN), The Royal College of General Practitioners (RCGP), others representing nursing, rehabilitation, physiotherapy, occupational therapy, orthotics, sleep therapy and psychology.
“There are more than 47,000 polio survivors still living in the UK. It could be as high as 120,000 because many cases of polio were mild and unreported. Some patients had no symptoms at all” commented Dhrona.
“Today we believe there could be as many as 1,200 polio survivors living in the North East and Cumbria area. Many could be starting to experience new or deteriorating symptoms such as chronic fatigue, difficulties swallowing or breathing, muscle or joint deterioration and worsening pain.
“Often GPs do not recognise the symptoms of LEoP or PPS. We encourage them to read the pathway and refer patients experiencing new or worsening symptoms to a Neurology Consultant or a specialist service, such as Walkergate Park for diagnosis. “
Polio epidemics during the 40s, 50s and 60s meant thousands of (typically) young children across the UK were left with physical damage as a result of the virus. These LEoP meant lifelong weakened or paralysed muscles in the legs, feet, arms, hands and/or truck, which affected and continue to affect mobility, breathing, skeletal development and/or swallowing, voice and sleep.
Years after contracting polio many people will go on to develop new muscle weakness and atrophy leading to new or increased symptoms of complete exhaustion, loss of mobility and increased pain, in areas of the body that recovered from infection or were thought not to be polio affected.
The Optimal Clinical Pathway for polio survivors (including the late effects of polio and post-polio syndrome) could be found on the BPF website:
For printed copies call the BPF Support Services Team on 0800 043 1935 (Monday to Friday 10am – 3pm)
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