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NICE guideline campaign - progress

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Campaign progress June 2022

Since we launched our campaign there have been significant steps forward thanks to those of you who have lobbied your MP:  

  • 64 MPs from all parties signed the Early Day Motion (EDM) and a number of MPs including some who signed the EDM and some unable to sign it, have backed our campaign by writing letters to Ministers and raising parliamentary questions
  • The All Party Parliamentary Group (APPG) on Endometriosis and the Scottish Parliament’s Cross Party Group (CPG) on Women’s Heath have both written to the Ministers responsible to express their support for updating the guideline

The Department of Health and Social Care (DHSC), the UK government department which oversee NICE, have recently confirmed to us that NICE are committed to reviewing the guideline and that the review is now underway. This is a huge step forward, and thanks to those of you who have backed our campaign. In early March, before we launched this campaign, we were informed by DHSC that NICE was not planning to review the guideline, so this is a win!

However, there is still work to do. We want to see the NICE Guideline on Endometriosis reviewed and updated to:

  • bring it in line with current evidence
  • address key gaps including endometriosis outside the pelvic cavity, non-pharmacological pain management and mental health support.

So the campaign continues. If you haven’t already lobbied your MP, you can click here to do so.

Campaign progress April 2022

As of 26 April 2022, our campaign has reached 85% of all MPs (553/650), so a massive "thank you" to those who have already taken part. Thanks also to those who have shared with us responses they have received from their MP. It's really helpful for us to know which MPs are responding and what they are saying to their constituents. 

64 MPs from all parties have signed the Early Day Motion - click here to see if your MP has done so.

While that may not sound like a lot, there are thousands of EDMs every parliamentary term, but most only manage a handful of signatures and around 70 get more than 100 signatures. It is also worth noting that anyone with a Ministerial role or any shadow ministers will not sign an EDM.

This does not mean that writing to an MP who can't or won't sign an EDM is a waste of time; it isn't, as it is an opportunity to make them aware of the improvements needed to endometriosis diagnosis and care. Some of the contacts we have had directly with MPs are with those who cannot sign EDMs, but are willing to help us try and achieve our aim of getting the guideline updated through other means. We are of course following up with those MPs. 

The Royal College of Obstetricians and Gynaecologists is officially backing our campaign to update the NICE guideline, and has publicly said so

About the campaign

We are asking our supporters to write to their MP to ask them to help improve endometriosis care by signing the Early Day Motion (EDM) on updating the NICE Guideline on Endometriosis.

NICE is the public body responsible for developing guidance for doctors and other healthcare practitioners on matters of health and public health, as well as standards of care for healthcare providers like hospitals to follow.

NICE Guideline NG 73 on Endometriosis Diagnosis and Management is the national guidance on diagnosing, managing and treating endometriosis for all four UK nations. 

Endometriosis UK wants NICE to review and update Guideline NG73 in order to address gaps including:

  • Access to pain management - NICE recognises that endometriosis is a chronic pain condition
  • Endometriosis outside the pelvic area such as thoracic endometriosis
  • Mental health support - endometriosis can have a negative impact on mental health

By asking your MP to sign the EDM on updating the NICE Guideline, we can show our campaign has the backing of the UK parliament and put pressure on NICE and the UK Government to make sure this happens.

Click here to write to your MP