How can we help you?
What we offer as support:
- Patient and family support
- Social events and fundraising opportunities
- 1:1 telephone support with a unique buddy system
- Information days and online patient evenings for Polyposis Syndrome patients as well as medical professionals
Volunteer for ‘Talking Together’
“Speaking to someone who’d had such a similar diagnosis and treatment and felt all the things I was feeling, was absolutely invaluable”.
We have recently completed setting up our buddying system which consists of Volunteers, and hopefully yourselves, in a group called “Talking Together”.
The Talking Together Scheme and how the Volunteering works is described in the handbook. Please click on the image on the right to register your interest in volunteering.
This service benefits the new patients at St Marks who come through Vicky Cuthill
and Jackie Hawkins, who want to talk with someone who has experienced similar situations and Polyposis Patients will now be organising these link-ups.
If you would like to volunteer the please let us know and we will send you a “Volunteer Form” . We will then be able to match any new patients to you when they need a helpful friendly phone call of support.
Many thanks for your help with this!
Our History
Polyposis Patient was established in November 2008 following a suggestion from Professor Sue Clarke at St Marks that it would help St Mark’s Hospital if there was a patient support group they could approach for comments on funding applications to support research and development. A group of St Mark’s FAP patients volunteered enthusiastically to support the hospital they valued so highly by forming such a group and Polyposis Patient was born!
Since then, PolyPeople has supported St Mark’s and the Polyposis Registry with financial contributions and involvement in their annual Information Day. We have also contributed towards the cost of developing the FAP app (for health professionals) and we have commented on funding applications when requested.
However, by far the most regular Polyposis Patient’s activity is the 1:1 support it can give to those affected by a polyposis diagnosis. Whether it’s at the point of diagnosis, pre-op, immediately post-op or many years later, polyposis is a relatively rare condition and living with a diagnosis can be a lonely place to find yourself.
So if you could help provide some 1:1 support from your own experience, please do get in touch!
Polyposis Patient objectives
- To provide support and information for those affected by Polyposis syndromes (patients, families and friends) by being a trusted point of contact: at diagnosis, pre-op, post-op, ongoing.
- To support St Marks Hospital and the Polyposis Registry in applications for funding for research, events or equipment.
- To raise awareness of the Polyposis syndromes (especially amongst GPs).
Meet our volunteers
Donate!
Polyposis Patient survives on the generous donation of our committee members, volunteers and the public to continue to strive to support all patients affected by the disease.
If you are able, please donate what you can by clicking one of the buttons below. You can donate a one-off amount or subscribe monthly amounts. Thank you for your support.
Fancy volunteering?
If you are able and interested in being involved with patient support please contact us and find out about
Talking Together, our buddying system to help support new and existing Polyposis patients.
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