Lincolnshire Post-Polio Network, now known as Polio Survivors Network, is a 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.
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.
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
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
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 www.neural.org.uk 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)
Become a member
For us, this illness causes significant problems and one way of coping with it is to have the facility to exchange details of our problems and coping strategies with other people who are similarly affected.
Sharing experiences
Managing our lives now with post-polio syndrome is not easy, what works for one may not work for everyone but if it works for you it is worth sharing
Photo Cards by member Val Scrivener
Pack of 5 –
Order by writing to Polio Survivors Network, email vala.scrivener412@btinternet.com or ring Val on 01234 346397.
The photos to the left give just a taste of the range of topics covered by my photo cards. When ordering, it is really helpful if you give some idea of the subjects that most appeal to you. Subjects include flowers, animals, trains, landscapes, buildings and, of course, cards with a seasonal theme (winter scenes, Christmas etc.). You may even state that you would like a pack with subjects suitable for men or, as one customer stated, ‘no cats please!’ –
To view more please follow THIS LINK