A NATIONWIDE campaign to raise awareness of endometriosis and speed up recognition could be “game-changing” if the Scottish Government “fund it properly”, a leading charity has said.
A resolution was unanimously passed at SNP conference last week calling on the Scottish Government to launch a nationwide awareness campaign aimed at promoting early recognition of symptoms.
It also called for ministers to work with healthcare professionals to develop guidelines for diagnosis and treatment, ensuring standardised care across the country.
Endometriosis is a disease where tissue similar to the womb’s lining grows in other parts of the body such as the ovaries or fallopian tubes. If left untreated, it progresses over time, so being undiagnosed can cause further damage to the bladder, bowel, and other pelvic organs.
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Emma Cox, CEO of Endometriosis UK – said she was delighted to see such a comprehensive commitment to improving awareness and knowledge of the debilitating condition.
She added that if the Government fund a campaign properly – something she said she had not seen from a government in the UK before - it could spark a real step change in normalising endometriosis across society.
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Cox (below) told The National: “I think it’s really great to see a political party taking endometriosis seriously and we’ve seen that come out in practice as well in the Women’s Health Plan in Scotland.
“What is good is it’s not one simple thing but there’s a whole bunch of things that need to happen in terms of educating the public, healthcare practitioners and employers so that people can be diagnoses early, so that is a big step forward.
“I think the thing for me is putting it all into practice and we are starting to see that in Scotland but there’s a long way to go.
“If they [the Scottish Government] do it and fund it properly, it will be really good to see a government put genuine money and effort into doing it properly to raise awareness.”
Asked if the campaign could be game-changing, she added: “Yeah, I think it would make a real difference. We would love to work with them on it.
“It would start to normalise the conversation around this so that people are seeking help and getting the help they need when they need it.”
The motion was put forward by Stacey Devine, an SNP councillor who suffered crippling symptoms of endometriosis for years and eventually had to undergo a hysterectomy. Her story is far from unusual.
The charity said a lot of women have to wait around eight years for a diagnosis and it tends to be a “postcode lottery” when it comes to effective treatment, including in Scotland.
Awareness of the condition is poor.
A survey the charity undertook recently showed well over a third of people asked had either never heard of endometriosis or didn’t know what it was.
Cox said as well as a nationwide awareness campaign, she would like to see the Scottish Government bring other building blocks into improving care for women with the condition.
“It needs to go hand in hand with ensuring that healthcare practitioners have the knowledge and skills to deal with people who come to them, because if we raise awareness and then people are just told to go on the pill, then there’s an issue there,” Cox added.
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“And rather than a one off campaign, let's embed menstrual education throughout schools so that in the future, everyone knows it right from the beginning.
“We’d also like to see continued investment in research so we can give better treatments to people.
“I suppose then for me, I always think to the next step because we’ve been campaigning for this for ages.”
The agreed resolution also called for increased research funding, support for affected individuals in the workplace and education settings, and the allocation of resources for organisations working on endometriosis.
Cox said in many respects Scotland had already gone further than other UK nations in trying to standardise care by setting up centres of excellence on endometriosis in Edinburgh, Glasgow and Aberdeen, but there are still capacity issues which need addressing.
She said: “I think Scotland have gone further than any other nation in the UK to try and standardise care but we’re not there yet.
“There’s some really great centres of excellence in Scotland for endometriosis but they don’t have the capacity to do the volume of work that they need to do.
“Also, 80% of people are expected to be seen in general gynaecology, and you might be lucky and get someone who is a specialist in endometriosis, but you could get someone who isn’t and that means we have the majority of people being seen by people in general gynaecology.
“What the guidelines say is that every gynaecology department should have a specialist in endometriosis, but they haven’t appointed those that we are aware of.”
Cox added that she would like to see the Government lead the way in making sure endometriosis is treated as the chronic condition that it is.
She said: “If someone has endometriosis and sometimes other conditions, so they might have a hysterectomy, they are often just left and there’s no pathway. They are just left floating with no access to the care they need. They need to have wraparound care.”
A Scottish Government spokesperson said: ““We are committed to ensuring those living with endometriosis are able to access the best possible care and support and that is why one of the initial priorities of the Women’s Health Plan is to improve access for women to appropriate support, diagnosis and the best treatment for endometriosis.
“We are working intensively with NHS Boards to reduce the length of time people are waiting for appointments and treatment. That is why we are investing £1 billion through the NHS Recovery Plan to support sustainable improvements and new models of care such as our National Treatment Centre Programme.
“We are jointly funding a £250,000 endometriosis research project with the charity Wellbeing of Women. The research project will primarily be run by researchers at the University of Edinburgh and will look at the drug dichloroacetate in the management of endometriosis-associated pain.”
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