NICE guidelines on PCOS

In February 2008, the Verity board of trustees put together a submission to NICE (The National Institute for Clinical Excellence) , who provide guidance on a wide range of health topics for healthcare professionals in the UK, to consider providing guidance on polycystic ovary syndrome (PCOS) as none currently exist.

It’s been a long process, but just two weeks ago we finally heard back from NICE that they are considering our submission and that PCOS as a guidance subject will be going before the NICE panel this November or February. To support it’s submission, they asked Verity to answer quite an indepth feedback form on why it’s important that PCOS gets it’s own set of guidelines.

Here’s some of the key points that we have outlined in our feedback to NICE:

  • PCOS is evidenced to have significant effects on a womans quality of life and emotional wellbeing
  • With good self management, appropriate guidance and treatment from primary care professionals and equitable access to specialist secondary care services there is a high possibility of the reduction in risks to womens long term health, fertiltiy and distressing symptoms such as facial hair, hair loss, acne, weight gain
  • Early identification is important for reducing the impact on long term health and managing symptoms effectively
  • Many of our members are still told to “come back when they want children” by uninformed medical practitioners
  • Our members report a great variability in the availabilty of specialist services and the quality of advice they are given both in primary and secondary care
  • As it is a syndrome with variable presentation guidance on screening and diagnosis will be very beneficial to non-specialist professionals eg: GP’s, Family Planning Staff
  • The syndrome requires a multidisciplinary service response and without clinical guidelines or care pathways this is difficult to commission and for women it will be challenging to access services

The fact that NICE are taking the submission under serious consideration is in no small part due to the feedback they received from leading PCOS experts including Professor Adam Balen and Professor Stephen Franks, both of whom serve on the board of PCOS UK, Verity’s medical education arm.

What are your thoughts? Do you feel it’s important to have consistent national guidelines on the treatment of PCOS, and if so, what difference do you think it could make to how you manage your condition?

  • http://www.blogger.com/profile/01204301786636979915 Nicky

    Hello,
    Yes I think it's very important and helpful to have NICE guidelines – if at the very least to have PCOS taken more seriously by the NHS. I work in the NHS and my role interfaces between the commissioning of secondary and primary care and I understand the importance of commissioning effective care pathways to improve patient's lives. I feel it is vital that decision makers (in this context commissioners of health care services) understand the needs of PCOS sufferers and how building comprehensive health programs is more effective than just fobbing patients off with a 'one drug fits all' kind of response. I hope to see a movement towards more interconnected care for women which involves a proactive approach from GPs, counsellors, nurses, consultants, nutritionists/dieticians and practitioners of complementary therapies such as acupuncturists, chiropractors, herbalists and spiritual healers to name a few.
    Nicky Perryman