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Failure to diagnose Post Polio Syndrome "affects thousands"

Healthcare professionals were today (15 October 2008) urged to increase their awareness of Post Polio Syndrome (PPS), as a recent survey carried out on behalf of the British Polio Fellowship revealed that 55% of GPs are unable to diagnose the debilitating effects of the condition.

An estimated 120,000 people in the UK today were affected by polio - now largely eradicated in the UK. Up to 80% of these will develop PPS, a neurological condition which can be as debilitating as polio itself.

PPS can arise 20-40 years after the initial disease. Symptoms include: muscle wastage, muscle and joint pain, and mental and physical fatigue, as well as impaired circulation and breathing.

However, proper diagnosis and treatment can stabilise and reduce the progress of PPS and dramatically improve lives. Without treatment symptoms will deteriorate, affecting not only the lives of the individuals concerned and their families, but having a knock-on economic impact through withdrawal from working life, dependence on benefits and increased use of NHS services.

Graham Ball, Chief Executive of the British Polio Fellowship said: "PPS is a major problem for many thousands of people and for those who aren't diagnosed their symptoms will deteriorate.

"We know from our members that many people who have had polio may not be aware that PPS might affect them and therefore not understand their symptoms. If their GP also doesn't recognise the symptoms then what chance do they have? There is clearly an urgent requirement for GPs to be trained in the diagnosis of PPS."

The British Polio Fellowship is calling for a Read Code to be created PPS and for all cases of polio to be registered by each GP surgery to facilitate faster recognition of the condition.

It also urges government support for the development and implementation of training modules in PPS across the primary care field, and for PPS to be reviewed by the National Institute for Health and Clinical Excellence, leading to accepted national guidelines on diagnosis, treatment and management of PPS.

The survey's findings are supported by a further British Polio Fellowship survey carried out amongst the organisation's 8,500 members. This revealed that it takes a shocking average of six years to get a diagnosis for PPS.

Dr Steve Sturman, Consultant Neurologist at City Hospital, Birmingham said: "PPS is a serious condition but early diagnosis can alleviate symptoms and delay deterioration.

"Many medical personnel could be unknowingly working with someone with undiagnosed PPS - from physiotherapists, to nurses and GPs. We urgently need to raise the profile of this disease and ensure that everyone with PPS is getting the treatment they need."

British Polio Fellowship

Are you aware of Post Polio Syndrome? Should more be done to raise awareness of this in general practice? Your comments: (Terms and conditions apply)

"I had polio aged 2 in 1955, it took my left leg and foot and I have struggled. Following a fall 3 years ago my condition has deteriorated, I am in constant pain, forever tired, all tests have come back negative. I saw an article about PPS and queried it with my GP - he knew nothing about it and suggested I researched it myself! I have found out about Dr Steve
Sturman and have made an appointment next week to insist I be referred asap. GPs should get some info on the condition PDQ" - Vanessa Wallington, Aylesbury

"I have PPS, and there is a wonderful online support group
( that has much info." - Tom, Georgia

"Yes, certainly, awareness must be raised about Post Polio Syndrome, especially if 'atypical polio', one of the names for ME/CFS, turns out to be correct. I was diagnosed with 'infantile paralysis and cerebro-spinal meningitis' at age 11 - all four limbs paralysed and brief blindness. I made what seemed to be a miraculaous recovery, except that I could never keep up physically with my peers, and went into architecture, following
school. The received wisdom at the time was that the more you did the stronger you would grow, which I believed and practised. In my 30s I had a first smallpox vaccination and was very ill, which triggered PPS, but no-one recognized it for a decade.   Then I discovered the DHSS had labelled me 'neurotic', asked for a second opinion, and was referred to the senior consultant physician at the local big hospital. After a thorough physical examination he roped in the senior orthopaedic consultant and the neurologist for the investigations necessary for a diagnosis by exclusion of 'late effects of polio'. This revealed brain damage affecting muscle coordination and osteo-arthritis.  Later, these records were 'routinely destroyed' and the 'neurosis' label cropped up again. Through the British Polio Fellowship I was referred to St Thomas' special unit for a week's in-patient assessment." - Margaret Anderson, Shropshire

"Dr Sturman has been instrumental in helping me to live with the effects of PPS. Although it did take five years to diagnose, my GP was patient, understanding and determined to find the cause for my weakness and pain. Thank goodness he found Dr Sturman." - Susie, Walsall

"Yes, awareness must be raised. I am frequently exhausted and at times suicidal with the pain. I am 64, and had polio as a child. I think PPS was bought on about 12 years ago by the trauma of a very bad knee injury. A couple of years ago,in despair, I asked to be referred to physio, and like Margo Anderson [below], was given exercises that were of no benefit.Was prescribed low-dose amitriptyline a couple of years ago, but it was of no help. I am also bipolar, and have just been cut off from mental health services because of moving, and being between areas. I
have treatment using the Bowen Technique weekly, and have a session of Chi-Gung weekly, usually conducted sitting down. I feel, like Margo, that the NHS has nothing constructive to offer me." - Geraldine Bower, Somerset

"I was diagnosed with PPS 2 years ago. I am 56 and had Polio when I was an infant. It took me years to get a proper diagnosis. I was working as a nurse and read about PPS and only after researching it myself via the internet did I get my GP to refer me to a neurolosgist who had a special interest in PPS to make a proper diagnosis. Ignorance of the condition among health professionals is rife. I was referred to physio and she thought I could do exercises to strengthen my muscles but of course this just made things worse and caused me pain. I don't really get any constructive help and have learned to pace myself. I think more must be done to raise awareness of this condition in general practice. Because most GPs think of Polio as a disease of the past it does not occur to them to ask patients presenting with PPS symptoms if they have had Polio." - Margo Anderson, Tain Highland