British Polio Fellowship Survey

GPs unaware of PPS danger, says survey

A new survey has revealed that despite being as common as Parkinson's disease, awareness amongst GPs of a fellow neurological condition, Post Polio Syndrome (PPS), is perilously low resulting in a forgotten generation of polio survivors struggling for diagnosis.

The survey, undertaken by The British Polio Fellowship, reveals that 69 per cent of GPs rate their own level of knowledge of PPS as low and 42 per cent said they would feel the need to refer a suspected PPS case to a neurologist for diagnosis, an acknowledgment that there needs to be more awareness of the condition across the first line medical community.

Ted Hill, chief executive of The British Polio Fellowship comments: “Despite the perception that polio has been consigned to the history books it continues to be a very real health issue with PPS affecting 120,000 people in the UK today, a prevalence rate of 190 per 100,000 – compared with a Parkinson’s rate of 180 per 100,000.

PPS is however perceived as a minority issue and barely even makes the medical school curriculum. This, combined with the lack of a direct diagnostic test and no clear treatment pathway, has resulted in a significant proportion of the population struggling for a diagnosis.”

PPS is classified (G14) by the World Health Organisation (WHO) as a disease of the central nervous system that is “an irreversible and incurable clinical situation in relation to the progressive dysfunction of the motor units.” PPS occurs in up to 80 per cent of people who have contracted polio earlier in life. After a long time without any significant change in their condition, people may develop new or increasing muscle weakness and pain, chronic fatigue and stamina problems.

Hill continues: “The survey responses have reinforced our members’ feedback that GP awareness is low and that we need to work harder than ever to raise the profile of PPS. They have, however, also been a great source of encouragement for us with a significant number of participants commenting that they are keen to learn more about the condition.

It is essential that more information is made available to GPs about PPS to enable them to make informed decisions. Not only because of the direct effect that this devastating neurological condition has on a patient’s quality of life, but because PPS can significantly impact on the success of treatment pathways selected to treat other health issues which the patient may be experiencing. For example, many of the most commonly prescribed anti-hypertensive drugs have an intensely negative impact on PPS patients.

In addition, there are real issues associated with delayed or mis-diagnosis – several of our members have undergone unnecessary operations such as hip replacements, or even suffered a massive decline in their health. In one member’s case a misdiagnosis of ME resulted in 40 per cent lung function loss and the need to be tube fed following the unchecked deterioration of her throat muscles.

The positive news for GPs is that this is a condition for which they can, once armed with the information, create a successful management strategy and positively impact on the patient’s quality of life.

The British Polio Fellowship is continually working to raise awareness amongst the medical community, from developing a series of PPS care pathways for the Map of Medicine, to the information packs available to health care professionals. We would encourage GPs to visit for more information or to contact us direct for one to one expert advice.”

Article from British Polio Website

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