Origins  and future

Post-Polio Syndrome is a neurological disorder that produces a cluster of symptoms in individuals who had paralytic poliomyelitis many years earlier. Typically, these problems appear after a period of functional and neurological stability of at least 15 years after the initial episode of poliomyelitis and may include new weakness, fatigue, decreased endurance and loss of function. It can include pain, especially in muscles and joints, muscle atrophy, breathing and swallowing difficulties and cold intolerance.[1]  It is not easy to diagnose and there is no cure. However, it is possible to enhance the way in which it is managed.[2]

The Scottish Post-Polio Network (SPPN) was founded in 2001 in response to the need to campaign for the better diagnosis, treatment and management of the Late Effects of Polio and Post-Polio Syndrome, for all sufferers within Scotland.  

SPPN has worked with the Scottish Government and other organisations; and participated in the group that produced the SMASAC Report[3].  This report identified the need to raise awareness amongst the general public, polio survivors and the medical professionals about PPS and how it might be best managed. Whilst there have been improvements in some areas since then, progress has been heartbreakingly slow and inconsistent. It is still a postcode lottery as to whether you will be referred to an appropriately knowledgeable Neurologist, Orthotist, Physiotherapist et al.

It was estimated that there are some 10,500 Polio Survivors in Scotland now, and that 60% of them would suffer from Post-polio Syndrome – i.e. over 6.300 people. (SMASAC report 2011). The average age of a PPS sufferer is 69 and by a ratio of 2:1 they are likely to be female, living in all parts of Scotland.

It is therefore important that any facilities, experience and expertise should be available across Scotland – irrespective of the Health Board area in which a patient is resident. It is also important that Health Boards in Scotland are prepared to refer to the Lane Fox Centre at St Thomas’ Hospital in London: – the only Centre in the UK which specializes in the diagnosis and management of PPS.

It must be acknowledged that our members are not getting any younger, and many are already suffering the late effects of Polio and of PPS. This will inevitably create problems in the future. It is therefore imperative that Polio survivors are treated in the same way as everyone else as outlined in the new Health and Social Care standards.[4]

Consideration must also be given now as to how the committee will operate long term and whether some element of “professional volunteers” should be sought from the pool of recently retired professional and administrative people who are able and willing to provide the necessary support.  It may well be that the friends and family of polio survivors have expertise and skills they could share. And in addition, secondments, work experience, student placements etc. are other strategies which should be examined as we seek to achieve our goals and objectives. SPPN’s role as a campaigning organisation which supports its members, continues to be its main focus.

[1] The Late Effects of Polio – Information for Consultants and General Practitioners, Queensland Report 2001; Dr Lauro Halstead’s definition.  

[2] “Post-Polio Syndrome: A guide for health care professionals” BPF 2016    

[3] Scottish Medical and Scientific Advisory Committee: “Post Polio Syndrome and the Late Effects of Polio” 2011

[4] Health and Social Care Standards – My support my Life – Scottish Government June 2017.

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