Suffolk women urged to share experiences of gynaecological pain to help improve NHS care
They've identified concerns including dismissed symptoms, diagnostic delays and lengthy waits for treatment.
Healthwatch Suffolk is asking people to speak out about their experiences of seeking help for period and gynaecological pain, after previous feedback identified concerns including dismissed symptoms, diagnostic delays and lengthy waits for treatment.
People across Suffolk are being asked to share their experiences of seeking healthcare for gynaecological and period pain as part of research aimed at identifying where local services could improve.
Healthwatch Suffolk is seeking accounts from people who have approached GPs, hospitals, specialist services or other healthcare providers for conditions and symptoms including pelvic and ovarian pain, endometriosis, fibroids, period pain and cramps.
The organisation says previous feedback has highlighted barriers experienced by women using NHS services, including symptoms being dismissed and delays in receiving a diagnosis.
It has also heard about the impact of lengthy waits for gynaecological treatment.
Wendy Herbert, independent chair of Knowing Works, which runs the Healthwatch Suffolk service, said concerns around women's health had emerged through several different areas of its previous work.
She said: “A while ago we did some stuff around people waiting for services and, again, some of the stuff around gynaecological waits were really surprising. They were really long.”
Ms Herbert said delays could have wider consequences for people's lives, including their ability to work or care for children and other family members.
‘Really affecting people's lives’
Healthwatch Suffolk says the initial stage of its work is designed to establish what patients themselves believe needs to change, rather than beginning with predetermined conclusions.
Ms Herbert said the organisation had also previously been asked by young people to explore hormone-related issues, adding to evidence that women's health was an area it wanted to examine more closely.
She said: “It just suddenly became an area that we realised was really important, really affecting people's lives and was getting very little attention.”
“We wanted to know what people think, what's really happening to them and what's important.”
The organisation says people can share both positive and negative experiences as part of the research.
Responses can also be submitted anonymously.
Healthwatch hopes findings can influence local services
Healthwatch Suffolk says it is already speaking to health and care leaders about the project and intends to share its eventual findings with them.
Ms Herbert said those conversations were important because the organisation wanted the research to result in improvements rather than simply document people's experiences.
She said: “We're talking to the health and care system leaders to say, look, we're doing this work. We want to share it with you. We want to make change and we want to follow that.”
According to Ms Herbert, local health leaders have been supportive of the work and have already identified the issue as an area of concern.
She said Healthwatch was deliberately beginning by listening to people's stories before deciding which questions should form the focus of later research.
“It's really easy to ask the questions that you think you want the answers to, but not to listen to what people really want to tell you,” she said.
“We're trying to really gather from people's stories, like what are the real issues that we need to ask and what are the real questions that we really need to lean into.”
‘Sometimes it's about people, sometimes it's about systems’
Discussing some of the wider challenges patients can encounter, Ms Herbert said barriers within healthcare could relate both to individual experiences and to the way services are structured.
She stressed that Healthwatch had encountered healthcare professionals who were committed to providing the best possible service while working under significant pressure.
However, she argued some systems had failed to keep pace with the way people's lives had changed.
“I think often there's two barriers, isn't there? There's many barriers, but sometimes it's about people, sometimes it's about systems,” she said.
“We talk to some amazing people in the health and care system who are really committed to giving just the best service they can at a time when they're really under pressure.”
Healthwatch has not yet reached conclusions about what changes should be made.
Ms Herbert said the purpose of the current stage was to gather sufficient evidence before making recommendations, adding that previous Healthwatch research had shown improvements did not necessarily require major expenditure.
“What people want isn't always massively expensive. It's not always the big stuff,” she said.
She added that listening to patients could potentially help services identify problems more quickly and avoid people having to make repeated contacts before receiving the help they need.
Suffolk experiences wanted
Healthwatch Suffolk is now encouraging as many people as possible to contribute to the research.
People can share experiences anonymously or provide their contact details if they are willing to discuss them further with the research team.
Ms Herbert said: “It's such a big issue, this stuff, and it's so misunderstood or unheard. We want to make sure we get to the right thing.”
“We've got one big chance really here to make a really big difference, I think. So we just want as many people engaged as we can.”
People can share their experiences through Healthwatch Suffolk's gynaecological and period pain project.