News / Charity apologises after endometriosis sufferers left on the floor at Holyrood event
Campaigner Gemma Graham complains of feeling ‘used’ by politicians at awareness function
AN ENDOMETRIOSIS campaigner says she felt “used and abused” by politicians after a disastrous awareness event for the disease in Holyrood last year.
Gemma Graham said endometriosis sufferers – including some with walking aids – had to sit on the floor while MSPs and their staff sat in chairs at the March 2025 event.
She also accused outgoing isles MSP Beatrice Wishart of using her for a photo opportunity before leaving the event after just 10 minutes.
Graham, who funded the trip to Edinburgh herself at just two weeks notice, was left furious and in tears after what she called an “appalling” experience.
It came during an endometriosis flare-up which left her bent over in agony, and unable to walk five minutes from Holyrood to her hotel.
But despite travelling for more than 17 hours via boat and bus to get to the event, Graham said speakers – including then health minister Jenni Minto – repeatedly told attendees they did not have much time for them.
Graham, who founded Endometriosis Support Shetland, put the group on pause for half-a-year as a result of the incident, which she said left her “so defeated and so deflated”.
After waiting almost a year to talk about it, Graham raised it directly to first minister John Swinney’s face at an SNP event in Mareel in February.
Speaking to Shetland News at length at the same venue last week, she said she had been unable to open up publicly about how angry it had made her until now.
“I have never ever been made to feel the way I did that day,” she said.
“I felt so used and violated, and like a pawn in this game.
“We were like a shiny toy because it was endometriosis awareness month, so let’s take this person that’s got this and say, ‘oh look, we’re friends, let’s get photos’.
“And then we were just discarded, not actually listened to, not actually given the time of day.”
The event is held annually to mark awareness month for endometriosis, which causes cells similar to those in the lining of the womb to grow in other parts of the body.
It can cause debilitating pain during menstruation and ovulation, and Graham has described it as a “full-body” disease – affecting everything from sleep to mental health, and sometimes impacting on other bodily organs such as the bowels and kidneys.
She started the Endometriosis Support Shetland group in 2022 after waiting for a decade for a diagnosis herself.
‘Is this actually happening?’
Graham was offered the chance to attend the 2025 event just two months before it took place, and booked “very highly priced” travel down to Edinburgh at late notice.
But whereas the same event in 2024 was a roundtable discussion between all parties, Graham said the 2025 event immediately felt much different.
“We didn’t have a table, there was just a few chairs around the side of the room.
“When we arrived, there was already a lot of people there – MSPs, assistants and parliamentary staff, and they were all sitting.
“The event started and we were standing there while everyone sat quite comfortably.
“Nobody was looking to think, ‘should we go and get some more chairs’ or should we stand up.
“We had people that very visibly had walking aids and were limping – you would think you would offer your seat up to them.”
Graham herself was “bent over in pain and clearly unwell” after a journey from hell to Edinburgh, exacerbated by an intense endometriosis flare-up.
Before boarding the boat the night before, she said she was unsure if she could even go because she was so ill – but had “nobody else to go” at such short notice.
Arriving in Aberdeen she was even more unwell, and ended up stuck in a disabled toilet in Union Square for over two hours because she physically “couldn’t move”.
“I managed to get myself together and out on to the bus, but it was the most horrific bus journey ever.
“I was messaging my partner saying ‘I think I’m going to have to get off in Dundee, I don’t think I can do this’.”
Graham “went massively downhill” and became “really feverish” in Edinburgh, and again thought she would have to cancel on the event.
But her fellow endometriosis group leaders rallied around her and offered to help her to Holyrood.
She said she was “wincing” and “clearly unwell” but had to stand, until she asked a man to give up his seat.
“Everyone else at this point had sat on the floor,” she said. “Nobody still thought to go get more chairs.”
“I was thinking, ‘is this actually happening?’ ‘Am I in the Scottish Parliament with a group of other women with registered disabilities and we’re sat on the floor?’
“I just couldn’t fathom it.”
‘Sincere apology’ from endometriosis charity
Graham said then health minister Minto opened the event by saying it had been a “really busy day” in Holyrood and that “there wasn’t much time”.
“My immediate thought was ‘wow, you’re opening it up by saying you don’t have time for us’,” Graham said.
“That immediately got my back up a bit.”
Minto spoke about positive change in endometriosis figures, she said, with figures showing waiting times had reduced from patients seeing a consultant to getting treatment.
However Graham called this a “serious flaw in data collection” – because it did not include information on how long patients wait to be diagnosed, which often takes up to 10 years.
Graham said there was a “lot of animosity in the room”, with people “heckling” speakers as the event continued.
She also questioned how people representing Endometriosis UK could look out and see attendees sitting on the floor, and not question it.
A spokesperson for Endometriosis UK said they “sincerely apologise” for the insufficient seating at the event in March 2025.
“The number of attendees was higher than expected and the venue was hosting multiple events simultaneously,” they said. “We took this matter seriously and investigated the situation at the time.
“As a result, for this year’s event, we made significant improvements to ensure that there was sufficient seating for everyone in the room.
“This included changing the room location and format of the event from a reception to a drop-in and ensuring staff were well-informed and had extra seats available if required.”
Graham said it “very much felt like nobody could be bothered to be there”.
“People were clock watching, people were writing notes and doing other bits and bobs,” she said.
“It was appalling to be honest, it was really, really poor. Some people didn’t even know what it was for.”
She also expressed disappointment with outgoing MSP Beatrice Wishart, who she accused of taking her for a photo and then leaving after five or 10 minutes.
“The next day it was on her Facebook page that she’d attended,” Graham said.
“I do feel with my previous experience with Beatrice, a little bit let down. I do feel she was part of the people that made me feel used and abused.”
In response, Wishart said she was “deeply saddened” to hear of Graham’s disappointment.
“Being an MSP is a busy job and there are often multiple parliamentary receptions taking place in an evening,” she said.
“I was present for photos from 6pm and then for speeches which began around 6.15pm where I heard from Monica Lennon, the MSP who was hosting the event, so I suspect I was in attendance for longer than is being suggested.
“I’m disappointed to hear that appropriate seating was not in place for the event. If this had been raised with me at the time, I could have taken it up with event organisers.”
Wishart said she had sought to raise awareness of endometriosis during her time as MSP, and to highlight issues around diagnosis and treatment.
Graham left the Holyrood event “so angry on so many levels”, she said.
“I phoned my mum and I just burst into tears. I can’t believe I travelled two days to get here, on my own money, to be made to feel like that.
“I couldn’t stop crying, I couldn’t even eat because I felt so upset.”
Raising incident with John Swinney
She said she was scared to talk about the experience at the time in case of a backlash, or of being accused of being “an emotional woman”.
Instead, having “lost [her] faith” in the politicians supposed to be helping, she decided to retreat and put Endometriosis Support Shetland on pause.
“I felt so disheartened by the whole thing,” she said. “I needed to take a bit of a break, a bit of a step back.”
After stewing on it for almost a year, Graham unexpectedly got the opportunity to raise it with Scotland’s highest ranking political figure.
A last-minute opportunity arose for a ticket to see first minister John Swinney in conversation at Mareel – in the front row – and Graham seized the chance to put the experience directly to him.
“When I started speaking, all the emotion came back up. My voice was quivering, but it wasn’t nerves, it was anger.”
Swinney pledged to investigate the incident, and said he was aware of events taking place at Holyrood which were not “sympathetic to people’s needs”.
Having now had a year to reflect on the incident, and the needs of people in Shetland, she has restarted work with Endometriosis Support Shetland – which has had a busy awareness month.
She did not attend the latest Scottish Parliamentary event for endometriosis awareness at Holyrood, adding: “I don’t really think I’ll go again.”
Labour MSP Monica Lennon, who hosted the 2025 event, did not provide a formal response to enquiries from Shetland News about the concerns raised.
However she said that she could not remember any event at Holyrood where attendees have had to sit on the floor, and said she did not recognise the allegations.
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