Published58 minutes agoShareclose panelShare pageCopy linkAbout sharingImage source, Abi JenkinsBy Antonia MatthewsBBC News More open conversations about dying should become the norm to better support people at the end of their lives, health experts and carers say.It comes as charity Hospice UK launches a week-long campaign focusing on the language we use around death.Abi Jenkins, who cared for a friend with terminal cancer, said “normalising” death and dying might help people.”We have this really weird taboo around death,” she said.Ms Jenkins was an end-of-life carer for Erin Corner, who died of ampullary cancer in January, aged 31.Ms Corner, who had also lost her youngest son Zac in a caravan fire in 2020, had written birthday and wedding cards for her two surviving sons before her death. Abi said she offered practical help, but also helped Ms Corner navigate her end-of-life care.Image source, Abi JenkinsThe 40-year-old, from Holyhead, Anglesey, said she and Erin, from Pontrhydfendigaid, Ceredigion, grew close following Zac’s death.”She knew how she wanted to die. We talked about what she wanted that to look like,” Ms Jenkins said.She said Ms Corner might have made some different decisions had she been better informed about things like sedation and terminal agitation, which can occur in the final days before death and leads to patients becoming restless and anxious.”Lots of the stuff that happened, we had no idea that that was going to happen,” she said.”We need to talk about it, whether we like it or not.”End-of-life: How home nurses helped ease my husband’s last daysExtreme financial pressure on hospices, says bossFear holiday park by kids hospice will taunt families”There should be far more discussion,” Ms Jenkins said. “People don’t know what to say. They draw back.”Conversations she had with nurses helped Ms Corner with the care she was receiving, Ms Jenkins said, but also made her realise how ill-informed many people are when it comes to palliative care.Laura Hugman, clinical team manager at Tŷ Paul Sartori, which offers a hospice at home service in Pembrokeshire, agreed there was a taboo around death that was sometimes unhelpful.”It’s a challenge. I don’t think we’re very good at talking about dying at all,” she said.Image source, Paul Sartori FoundationHow much people want to know about dying itself is “a real mix and a personal choice”, she said.She said it was key for people to know what services were available, particularly at a time when accessing a GP is not always easy.’Clearer message’Mark Taubert, a consultant in palliative medicine at Velindre University NHS Trust in Cardiff, said it was important to let patients know gently what might happen to them, but also how good planning could provide them with better care.In his experience, 95% of patients want more detail about what will happen to them towards the end of their lives.”Improving the language and getting the message across in a much clearer way is important,” he said. But the approach needs to be individual for every patient and every family, he added, with some patients less willing to hear certain details than others.Image source, Dr Mark Taubert”If they feel in control of the conversation about end-of-life care and the future… that can be very, very helpful,” said Dr Taubert.”You nearly need an end-of-life palliative care ‘personal assistant’ who is ‘bespoke’ to you.” ‘Battle language’Dr Taubert said there was a tendency among many patients and their loved ones towards constant positivity “battle” language, praising the patient for “fighting” and “being strong”.But such language can be problematic as people near the end of their lives, in his view.”When you’re tired, all your hair has fallen out, you’re feeling nauseous and you’re in pain, then the battle language I think lets you down a bit,” he said.”You need a trusted person to be able to confide in and to talk to and let out these things,” he said.Signalling to patients – even when they are not yet dying – that a conversation about end-of-life would be useful to have in the near future can help them prepare for it and get family members involved, he said.Image source, Paul Sartori FoundationMs Hugman said Tŷ Paul Sartori nurses provide information to carers about nutrition and mobility in a patient’s final days. The charity, which helps 40 to 50 patients a week by offering respite visits, also makes sure discussions around managing pain relief take place, ensuring patients and carers understand the extent to which that will affect the patient’s cognition.Family members were often very protective of each other, Ms Hugman said, sometimes making it hard to have open conversations.”People don’t want to come near death and dying… people are never quite ready to think about it,” she said.Ultimately, there’s no right or wrong way to look after a bereaved family, said Ms Hugman.”It always comes as a shock when someone passes away, even if the family is completely prepared.”More on this storyMum with cancer dies after losing son in firePublished9 January’What terminal cancer has taught me about life’Published27 JanuaryMums who met at children’s hospice climb mountainsPublished30 April 2023

Published3 hours agoShareclose panelShare pageCopy linkAbout sharingImage source, Michelle BatesBy Antonia MatthewsBBC News The wait to be diagnosed with endometriosis has increased to almost ten years, a “devastating” milestone say women with the condition.It now takes almost a year more than before 2020 to be diagnosed, according to research published by Endometriosis UK, which is setting up new volunteer-led support groups in Wales.The wait in Wales is also the longest in the UK, the research found.The Welsh government said it knew there was “room for improvement”.”Nobody listened to me, and to feel like women are still going through that 20 years after my diagnosis is horrific,” said Michelle Bates.The 48-year old from Cardiff was diagnosed aged 25 after suffering with “harrowing” pain from age 13 onwards – a 12-year wait.NHS Wales: Plan to cut waiting lists to a year by 2025Specialist endometriosis nurses appointedCall for menstrual wellbeing lessons in school”I went back and forth to the GP with my mum, who was the only one who believed in my pain,” she said. Ms Bates said she “knew there was something wrong” but explained her diagnosis was “accidental”.”I remember passing out at work one day. I was in so much pain,” recalled Ms Bates, who works in finance.An ultrasound for suspected appendicitis revealed three very large cysts, including one hanging from her ovary that was 12cm (4.7 inch) in diameter.She had just got married, and was told by her surgeon she had the worst case of endometriosis they had ever seen.In her early 30s and going through IVF, another doctor told her she was menopausal.”My chances of having a child were dashed,” Ms Bates said.What is endometriosis?The disease causes tissue similar to the lining of the womb to build up in other organs, such as the ovaries or fallopian tubes.Tissue builds up every month, and then breaks down and bleeds. Unlike cells in the womb that leave the body as a period, this blood can’t escape and can result in inflammation and scar tissue.It can cause severe, chronic pain and fatigue and can make it difficult to get pregnant.Some of the main hormone-based treatments for endometriosis include oral contraceptive pills and the intrauterine system (IUS), or coil.Other treatment options include surgically removing endometriosis tissue.There is no cure.Source: NHS/Endometriosis UK’Massively gaslighted’The study by Endometriosis UK, which is based on a survey of 4,371 people who received a diagnosis of endometriosis, showed almost half of all respondents (47%) had visited their GP 10 or more times with symptoms prior to receiving a diagnosis, and 70% had visited five times or more.It also found 78% of people who later went on to receive a diagnosis of endometriosis – up from 69% in 2020 – were told by doctors they were making a “fuss about nothing”, or comments to that effect.”We are massively gaslighted and invalidated by healthcare professionals,” said Charl Davies from Blaenavon, Torfaen.Image source, Charl DaviesThe 31-year-old was told the pain she was experiencing from the age of 10 onwards, when her periods started, was “just normal period pain” and “a normal part of being a woman”.”I was blacking out and fainting,” Ms Davies, a tattoo artist, said. “We’re taught to believe agonising period pain is normal pain.”She said receiving her diagnosis was a “very bittersweet feeling”, adding she was sick of hearing she had “a low pain threshold”.Lowri Shepstone, from Brecon, Powys, had to wait 17 years for a diagnosis and said she was also told her symptoms were not abnormal.Image source, Lowri Shepstone”Have a hot water bottle, and we’ll put you on the pill,” was her GP’s response when she was a teenager, she said.”The day I actually got a diagnosis, I nearly burst into tears.”The realisation something was seriously wrong was almost a relief, the 38-year-old said.’Real suffering'”There’s real suffering behind endometriosis,” Ms Bates said. “You kind of look OK but it robs you of enjoyment.” She said colleagues showed little understanding and she was left feeling isolated and low. “When you are having intercourse, you find yourself crying afterwards and thinking: ‘this is not normal’,” she said.Ms Shepstone also pointed out women suffering from endometriosis suffer from “endo belly”, caused by bloating.”You can look eight months pregnant but not be pregnant and potentially not be able to have children,” she said.”It’s like a cruel trick.”Ms Davies is due to undergo a third laparoscopy next month to remove tissue – a procedure she says she has waited 70 weeks for.She said daily pain made every day a struggle, even leaving her feeling suicidal.”I’ve got a body clock that is ticking. I can’t start a family until I’ve had the surgery and then there is a small window of opportunity,” she said.”As a woman, it makes you feel completely inadequate.”Three new Endometriosis UK volunteer groups will offer help for people with the condition in the Swansea area, in west Wales and in and around Wrexham.’Woefully inadequate’Female health charity Fair Treatment for the Women of Wales said patients who had access to an endometriosis nurse had “nothing but praise and gratitude for the care they offer”.”However, one endometriosis nurse per health board is woefully inadequate,” said Debbie Shaffer, policy and research director at the charity.”Some of the endometriosis nurses have told us that they have a patient list of over 1,000 at any one time.”The Welsh government said it had funded dedicated endometriosis nurses within each health board across NHS Wales.”Patient feedback suggests they feel supported, listened to, and have a better understanding of their condition,” the spokesman said.”But we know there is room for improvement, and we are working with the endometriosis nurses to identify areas for improvement.”More on this story’My debilitating condition has cost me £20K’Published8 March 2023Specialist endometriosis nurses appointedPublished8 March 2022Waits ‘too long’ for endometriosis helpPublished7 March 2018