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.
- Encouragment 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 contribute to meetings at the National Institute for Health and Clinical Excellence (NICE) and the Royal College of Obstetricians and Gynaecologists (RCOG). 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)
The charity actively participates in many local, national and international meetings and conferences, giving presentations and workshops for clinicians, patients and the public. In 2008 we presented data on the patient experience of a wide range of pelvic pain conditions in the UK, France and the USA at a World Congress in Melbourne, Australia. In September 2008 we presented our findings from a survey about patient education and adhesions at an International Conference on Adhesions in Clermont-Ferrand, France. In May 2009 at an International Endometriosis Congress in Rome, we presented work from a collaborative project of several countries and patient organizations on multi-disciplinary and patient involvement in clinical guidelines.
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.
Editorial Board
The Editor of the website is Judy Birch B. Ed ( Education and Psychology ). Judy is assisted by Judy Jansson, retired Health Information Manager at Poole Hospital and Trustee of the charity. Our medical advisory panel assist in reviewing the information on the website and in our information leaflets. They have also contributed articles in their respective areas of expertise.
Click here for Medical Advisory Panel
