So you may have heard today that NICE - the National Institute for Health and Care Excellence - have released guidelines for endometriosis. But, what does that really mean?
NICE "provides national guidance and advice to improve health and social care".
They have been working on endometriosis guidelines since 2014 and they have now been released.
These guidelines provide best practice guidance for health care professionals supporting women suspected of having endometriosis or who have already been diagnosed.
The guidelines aim to;
- Reduce diagnosis times
- Raise awareness of the disease amongst health professionals
- Ensure timely treatment
On top of that, there are some really positive points in the guidance. I can't tell you the amount of women I've spoken to who had surgeons who missed endometriosis or parts of it because they didn't know what they were looking for, who had been given one or two options for pain relief that didn't work for them and was left to get on with it or who had lots of symptoms that led to disjointed working amongst different health departments. These guidelines should help erase some of those issues with the following best practice guidelines;
Gynaecology services for women with suspected or confirmed endometriosis
1.1.3 Gynaecology services for women with suspected or confirmed endometriosis should have access to:
a gynaecologist with expertise in diagnosing and managing endometriosis, including training and skills in laparoscopic surgery
a gynaecology specialist nurse with expertise in endometriosis
a multidisciplinary pain management service
a healthcare professional with an interest in gynaecological imaging
Some other amazing breakthrough areas include;
- Women often get turned away after having an ultrasound or MRI sound that is normal, however new guidelines state - Do not exclude the possibility of endometriosis if the abdominal or pelvic examination, ultrasound or MRI are normal. If clinical suspicion remains or symptoms persist, consider referral for further assessment and investigation.
- Women often feel isolated and struggle with getting family, friends and partners to understand what they're going through, now the guidelines encourage involvement from these individuals throughout all stages - If women agree, involve their partner (and/or other family members or people important to them) and include them in discussions. For more guidance on providing information to people and involving family members and carers, see the NICE guideline on patient experience in adult NHS services.
When I was diagnosed, I was literally told that they found it and it probably wouldn't come back, and then sent home once I came round. Everything else I found out about endometriosis came from my own research in the years afterwards. Now NICE are urging professionals to take the time and explain the disease and provide the right information - Provide information and support for women with suspected or confirmed endometriosis, which should include:
what endometriosis is
endometriosis symptoms and signs
how endometriosis is diagnosed
- local support groups, online forums and national charities, and how to access them.
There's much more to the guidelines, but these were just some of the areas I was really excited about. I personally feel that this leads the way for great change with how endometriosis is treated and diagnosed, and also gives us the chance to questions professionals when they're not providing the recommended service.
To have a read, click here.