Lincolnshire Post-Polio Network, now known as Polio Survivors Network, is UK registered Charity No 1064177. We provide an information service and quarterly newsletters for polio survivors, their families and friends, and health professionals. For information on how the UK charity registration system operates, see www.charity-commission.gov.uk.

Who we are

We are polio survivors (not doctors) who, after years of stable functioning following recovery from polio (poliomyelitis, infantile paralysis), are experiencing new deterioration. In most cases these problems have been gradual and, whilst medically noted, most often are not explained or diagnosed/diagnosed correctly over many years.

A few years ago the committee decided that having Lincolnshire in our title was restrictive when discussing issues with NHS departments in other areas of England. To better reflect the spread of our membership we became known as Polio Survivors Network.

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Our Intentions

To collect, collate and provide polio and post-polio conditions related material from all over the world. This includes, but is not limited to, infantile paralysis, polio, poliomyelitis, post-polio sequelae, post-polio syndrome, post-poliomyelitis syndrome and the late effects of polio. The most common term is post-polio syndrome, with the abbreviation PPS.

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Our Aims

To represent the concerns of the members of the Polio Survivors Network and their families

To promote an understanding of the experiences of those living
with the long-term effects of polio and post-polio syndrome among health and social care professionals, service providers and the general public

To encourage health and social care service providers to include polio survivors and families in the consultation and planning of local services

To promote the provision of good quality and appropriate multi-disciplinary assessments, rehabilitation and respite care for polio survivors, their carers and families

To promote the provision of good quality information that enables and empowers polio survivors and their families to make decisions about their daily lives

To promote better research of treatments, therapies, equipment and quality of life issues that concern polio survivors and their families

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By

Consulting the members of the Polio Survivors Network and other polio support groups around the world to identify their concerns

Raising awareness of the new issues being experienced by survivors of polio

Encouraging working relationships between our members and health and social care services at national and local levels

Educating and informing

Networking with others who share similar concerns

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Our Campaigning Messages

Better understanding by health and social care professionals that there is a later stage to having had polio in one’s earlier life and how it affects individuals, their partners and families

Appropriate and adequate assessment of physical abilities including endurance testing

 Appropriate and adequate assessment of respiratory and swallowing problems

 Better listening to polio survivors’ experiences of the symptoms of post-polio syndrome and changing the questions ‘Can you do x?’ to ‘How do you do x?’ – allowing polio survivors to tell it like it really is

Better focus on the needs of people with rare conditions by health and social care professionals and researchers. Post-Polio Syndrome is classed as a rare condition

Better orthotics and wheelchair services

 Membership of the Neurological Alliance working with the leading national campaign for better services for those with neurological conditions; repeatedly raising the issues of poor or non-existent data hampering the discussions in many areas (Lincolnshire is a prime example)