Policy
APPG to host meeting with endometriosis patient groups
*URGENT UPDATE*
Following the death of Her Majesty the Queen, parliament will be adjourned for two weeks from Monday 12 September. The APPG meeting, which was due to take place on Wednesday 21st September, therefore had to be cancelled.
The APPG Chairs and the Secretariat have now identified a new date for the meeting which is Tuesday 25 October from 15.30-16.30.
The APPG on Endometriosis would like to engage with organisations and groups representing endometriosis patients/those with endometriosis to inform their work in the UK parliament.
To this end, the APPG is inviting endometriosis groups to nominate a representative to attend the next meeting of the APPG, which is taking place on Tuesday 25 October 2022. Representatives can attend in-person in parliament or virtually. For practical/capacity reasons, the APPG is asking groups to nominate one or two person(s) to attend the meeting.
Any endometriosis groups interested in getting involved with the APPG are kindly asked to email us to be added to our mailing list.
NICE guideline campaign - progress
Click here to write to your MP
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
Ask your MP to back our campaign to improve endometriosis care
IMPORTANT UPDATE 7 November 2022: NICE have now agreed to update the guideline. More info here. Thanks to everyone who took part in our campaign; we couldn't have done it without your help!
Please write to your MP to ask them to back our campaign on to improve endometriosis diagnosis and care
Click here to Write to Your MP
Please write to your MP and 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
Updating NICE Guideline NG73 is an opportunity to improve care and support for those with endometriosis. 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.
