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© Polio Survivors Network 1996 to 2011     Registered Charity 1064177

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Post Polio News

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FIRST AUSTRALASIA-PACIFIC PPS CONFERENCE 2016

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Polio Survivors Network - Affiliations Website by Elpeeko

About Us

Polio Survivors Network is a support network for Polio Survivors experiencing and coping with the effects of Post Polio Syndrome. [PPS]

We are a UK Registered Charity (No. 1064177). For information on how the UK charity registration system operates. www.charity-commission.gov.uk

We are Polio Survivors (not doctors) who, after years of stable functioning following recovery from Polio, are experiencing new deterioration. In most cases these problems had been gradual and medically noted (most often not explained) over many years. Until May 1995 we knew nothing about PPS but our Founder heard the term 'old polio' relating, she was told, to breathing problems being experienced by people who had been in iron lungs. She had spent seven years of increasing new problems that were being labelled as ‘all in her mind’ so in November 1995 she asked a Consultant could Polio be her problem? The answer that she presented the same symptoms as another patient who had had polio as a child, led her to start searching for more information.

In February 1996 radio broadcasts and local news items started to bring together Polio Survivors in Lincolnshire. In late July 1996 - having been put in touch with The Leicestershire Polio Network - some of us decided to form the Lincolnshire Polio Network, later renamed The Lincolnshire Post-Polio Network, to enable us to share information with other networks in the United Kingdom and worldwide.

A couple of years ago the Committee decided that having the county name 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 Polio Survivors Network.

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 Post-Polio Sequelae, Post-Polio Syndrome and the Late Effects of Polio.

Our Aims

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

To promote 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.

By

OUR CAMPAIGNING MESSAGES

Better understanding by health and social care professionals of post polio syndrome and how it affects individuals, their partners and families.

Appropriate assessment of respiratory and swallowing problems.

Appropriate assessment of physical abilities.

Better listening to Polio Survivors’ experiences of the symptoms of post polio syndrome.

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.

Full implementation of the National Service Framework for Long Term Neurological Conditions, published in March 2005.
This Framework sets our eleven Quality Requirements for the standard of care for everyone with a neurological conditions living in England between the ages of 18 - 64. Current implementation is, at best, patchy.
Polio Survivors Network is a member of the Neurological Alliance leading the national campaign for full implementation: www.neural.org.uk

POST POLIO MATTERS

Polio Survivors are still here
Please take our Campaigning Messages Seriously


We are members of / affiliated to:

The Neurological Alliance

Lincolnshire Neurological Alliance (some members are members of other local regional UK alliances)

National Voices

Rare Disease UK

European Polio Union

Post-Polio Health International

Our Aims

Our Intentions

Our Campaigning Messages