Why did you decide to set up the charity?
Endometriosis is relatively common and potentially debilitating condition and can have a significant physical, mental, psychological and social impact.
Patients are not seen on an urgent basis because of the variability of clinical presentation, poor referral and a lack of specialists. On average it takes 7.5 years for a woman to receive a diagnosis, but one in 10 women suffer with endometriosis.
I was part of the NICE’s guideline development group for its endometriosis guidance. And that, coupled with listening to my patients, their parents and partners, made me really want to do something to help both healthcare professionals and patients and raise awareness of the condition.
Who else is involved in the charity?
The charity was set up by myself, consultant gynaecologist Dr Gaity Ahmad who is a specialist in endometriosis in one of our local hospitals and patient Courtney Ormrod who has suffered from endometriosis since she was 17 years old.
We’ve had help and support from other people including other patients and their parents, a charity accountant who has helped set up our accounts and someone who helped set up the website. The chair of my practice’s patient participation group is also involved.
No one is asking for or getting any payment. They all are involved because either they have suffered from endometriosis or a member of their family has.
The charity is focused on the North West of England.
What is the charity aiming to do?
We are aiming to raise awareness of endometriosis among patients and professionals so that people can receive timely diagnosis in line with current guidelines.
We’re aiming to raise awareness of the symptoms and give advice as to what action to take when suffering with symptoms suggestive of endometriosis.
Myself and Dr Ahmad deliver regular training sessions to primary care healthcare professionals in the local area to help improve understanding of endometriosis and the signs and symptoms of the condition.
All women with endometriosis should be given information about online forums, local and national support group and how to access them and this is what our charity is aiming to provide
What do your training sessions with health professionals involve?
The education sessions are very focused on diagnosis and management. One of the key things GPs need to know is that even if the pelvic USS is normal, if the patient is symptomatic then they should be referred.
Patients with endometriosis should also be followed-up regularly by a in the same sort of way as a patient with hypertension or diabetes would be.
It is important for GPs to listen to patients and the impact their symptoms have had on their education, family and job
I also do gynae triage of all GPs referrals twice a week and do give advice to GPs on inappropriate referrals.
What else are you doing to raise awareness?
We undertook a 5km walk to coincide with Endometriosis Awareness Month in March, involved 40 people. The walk was aiming to help raise awareness and many of those who took part wore yellow, the colour of endometriosis awareness.
We’ve also done some work with our local paper the Oldham Chronicle and a local sports club in Oldham as well. We are planning on running more events in future as well.
Where can people find out more information?
The charity’s website is https://endometriosisawarenessnorth.com/