PPS Management and Care Guide – British Polio Fellowship
Introduction
Post Polio syndrome (PPS) is a neurological condition that occurs in many people who have had Polio. PPS occurs at any age, in people who had either paralytic or non-paralytic Polio. After decades without any significant change in their condition, people often develop new symptoms of increasing weakness, stamina problems, fatigue and pain.
There are over 120,000 people who have had Polio in the UK, most of whom could develop PPS. The diagnosis and treatment of PPS is frequently delayed as symptoms often develop slowly and may be mistaken for other conditions: PPS is a diagnosis of exclusion.
Research has established that PPS is a distinct clinical entity, but predicting who is most likely to experience PPS is not possible. it is estimated that PPS develops in the majority of people who contracted Polio and its prevalence is expected to increase in the uK, firstly due to changing demographics from an ageing population and secondly immigration where presenting cases will be younger and have different needs, for example management during pregnancy.
Symptoms of PPS may include the following: general fatigu, neuromuscular fatigue (muscle fatigue), muscle and joint pain, muscle loss, new or increasing localised weakness, sleep disturbance, breathing problems, cold intolerance and swallowing problems.
With the exception of a Scottish review2, which has its limitations, there are no UK specific guidelines for the management of PPS, and surveys show that awareness of the condition amongst GPs is very low. Consequently, access to appropriate services for people with PPS varies widely. As GP-led clinical commissioning becomes the established model, these guidelines will help establish standards of care and improve the quality and consistency of service provision across the UK.
A diverse range of interventions is used to manage the symptoms of PPS and there is considerable variation in service provision. Symptoms of PPS can be managed within a variety of settings ranging from the community to specialist neurological or rehabilitation services. Access to specialist services is variable and is dependent upon referral from a general Practitioner.
A comprehensive review of benefits and risks of different management strategies in both the short and long term is needed to help health professionals, patients and carers who are
faced with a choice between different long-term treatments.