PDF《Support for炉he烫hronic Pelvic Pain》

15 J.

M. Meijlink (*) International Painful Bladder Foundation (IPBF), Mahlerlaan 4,

1411 HW Naarden, The Netherlands e-mail: [email protected]

2 The Changing Role of?Organized Patient Support for?the?Chronic Pelvic Pain Patient Jane?M.?Meijlink Introduction While mutual aid groups and friendly societies were already a popular phenome- non in the nineteenth century at the time of the Industrial Revolution, with the rise in Socialism and Trade Unions [1, 2], modern patient support groups evolved from the mid-twentieth century'

s member-focused self-help and support group concepts into support and advocacy groups with an increasing range of tasks to meet the demands of today'

s electronic world and a need for high-quality, reliable information, in addition to providing emotional support and practical information for patients. In recent years, the emergence of the concept of patient empower- ment has led to an increasing need for patient advocates to represent their fellow sufferers in the complex and political world of health with the aim of achieving patient-centred healthcare and ensuring that the patient/consumer has a voice in all decision-making about his/her healthcare at all levels. This includes, for exam- ple, such diverse issues as education and awareness campaigns for the general public as well as the patient, lobbying authorities in relation to health policy, patient safety, access to social benefits, reimbursement of treatment, patient par- ticipation in clinical guidelines and standardization, involvement in research, fund-raising and much more besides.

16 Decline in?Community'

Umbrella'

Led to?Rise in?Support Groups Our increasingly mobile society has led to a decline in the close-knit family network with family members now scattered not only all over the country but often through- out the world, while many people no longer know their constantly changing neigh- bours. In developed countries in particular, this has resulted in a loss of care from the extended family or community '

umbrella'

that existed in the past. Furthermore, the family doctor who once knew the entire family has often been replaced by pri- mary care clinics where patients cannot always be sure of seeing the same provider twice. Home visits by the family doctor which formerly played an important role in primary healthcare are now greatly reduced, often applying to emergencies only, while the district nurse has disappeared from the scene in many developed coun- tries. When combined with economic cutbacks in home care services, this means that chronically ill people may often be isolated and left to fend for themselves. Patient Support Groups in?Urological and?Gynaecological Chronic Pelvic Pain Syndromes Patient support groups in the field of urological and gynaecological chronic pelvic pain syndromes really began to emerge with the foundation of the Interstitial Cystitis Association (ICA) in the USAin 1984. By 1993, IC groups were forming in Germany, the UK and the Netherlands and soon began to fan out around the world. In 1994, the National Vulvodynia Association (NVA) was formed in the USA by five vulvodynia patients, followed by the Vulval Pain Society in the UK in 1996. The American Prostatitis Foundation was set up in

1995 and likewise stimulated support groups in this field for men in other parts of the world, notably in the UK. It was not easy. They were faced with a deep-rooted social taboo or stigma on any discussion of embarrassing disorders between the waist and the knees. While bladders and urine were topics to be avoided in polite society, the very intimate problems of vulvodynia―let alone sexual pain―were completely off limits and only raised in hushed, embarrassed tones in the doctor'