The Pelvic Pain Support Network is a registered charity. It is a patient led organization with a board of trustees who are all patients or carers, and is run entirely by volunteers. We have an advisory panel of clinicians, researchers and health professionals who have an interest in pelvic pain from many areas of expertise and countries including Belgium, France, Germany, UK, USA and New Zealand.
What we do
- Provide support, information and advocacy for those with pelvic pain, their families and carers.
- Promote education about pelvic pain in the curriculum of health professionals and amongst the public.
- Encourage and support of research to increase knowledge and understanding of the impact of pelvic pain.
The Pelvic Pain Support Network is a member of National Voices, the International Association for the Study of Pain (IASP), the International Alliance of Patient Organizations (IAPO), the James Lind Alliance (JLA), the National Council of Voluntary Organizations (NCVO), Poole Council for Voluntary Service (PCVS) and the Chronic Pain Policy Coalition (CPPC). We have contributed to an NHS Direct user panel which looked at multi-media health information services. At local level in Poole, Bournemouth and Dorset, we initiated and pursued a long term project over several years, involving endometriosis patients and carers in order to highlight important issues for patients. The focus of this work included improving the quality of information for patients, clinician education and the development of local guidelines. These suggestions have been incorporated into the Endometriosis guidelines for the Royal College of Obstetricians and Gynaecologists (RCOG).
In 2008 we gained a prize from the Council for Voluntary Service for the website. The website content is regularly updated and new information added. In 2008 we carried out a survey of patient information needs and views and developed the website based on the results of the survey. We have added several additional features to the website which were requested in the survey. We have also reorganized the information and added several new categories. We welcome feedback which assists us in responding to the needs of our website users. You can help with this by sending your response via the feedback page.
The message board is well used and enables patients to link with others with similar problems. The response from patients tells us that this a greatly appreciated source of support.
Our free e-mail newsletter of news items, recent articles, research, events we have attended, pelvic pain in the media, etc is sent to those who request it 3 times a year. If you would like to receive this, please add your e-mail address via the “subscribe to our newsletter” button on any page of the website. We are pleased to hear from those with an interest in pelvic pain whether they are patients, carers, clinicians or researchers.
The information is produced by our medical advisory panel, those with experience of the conditions, carers and those who may not have direct experience.