The Pelvic Pain Support Network supports patients with a wide range of conditions for which there is no NICE guidance. It is extremely difficult for these patients to access health professionals with expertise in these conditions. This creates inequalities in access to care.

  The decisions are increasingly being challenged for several reasons:

—    There are many gaps in the guidance. Areas that are not included tend to be of low priority despite their impact on quality of life.

—    There is little room for patient choice in treatment.

—    Guidance only takes account of research published in English.

—    The guidance may already be out of date by the time it is published due to the length of time it takes to develop it.

  Implementation is hit and miss due to lack of familiarity with guidance at local level and a lack of available data on patient need. The system is rigorous but it is a huge amount of effort which is not necessarily translated into practice for the benefit of patients. Development of guidance needs to be linked to training of health professionals many of whom are not familiar with the research. The Haute Autorite de Sante in France is a coordinated comprehensive model from which we could learn a great deal.

Pelvic Pain Support Network

March 2007