No more sticking plasters over Hospice funding, minister says
"We do warmly welcome the way that people step up and get involved in supporting their local hospice, but I absolutely recognise that we, the Department for Health and Social Care, we need to step up and do our bit," he said. The £75 million is in addition to a £25 million package the government distributed in February.
Hospices in the north west of England provide end-of-life and palliative care for some 23,000 people in the region, with demand and costs continuing to rise. Geoff Crook, 68, had been receiving care at Wigan & Leigh Hospice earlier this month alongside his wife Margaret, allowing him to be by her side for her final moments. "I don't think we would have been able to cope if we hadn't had anything like this, I really don't" he said. Wigan & Leigh Hospice chief executive Jo Carby said the £500,000 would be used to fix the building's leaking roof and to put in a new heating system and memory garden. But she said it was "not enough" and that hospices needed a longer-term solution. "Everyone's struggling for money essentially in our borough and it is unfair for us to be asking the people of Wigan to be spending more of their money when they already have less to spend in order to keep the hospice going," she said.
Kinnock said the government was currently negotiating how much funding would be allocated to palliative and end-of-life care in its three-year-spending review settlement. He said: "As soon as we have that I want to see that long-term plan to take us at least through to the end of this parliament. Kinnock said the government was determined to find "long-term solutions". "I have made it very clear to my team of officials in [the Department] that I don't want another last-minute scramble at the end of the financial year to, with a sticking plaster, solve a problem for the short term," he said.
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For most of her childhood, Hughes, who works as a community development worker in Renfrewshire, didn't regard herself as struggling for survival. Her parents didn't sit her down in childhood to explain her illness; she had been diagnosed at six weeks old. But there were hospital visits and tablets and eating often made her vomit. Gradually, she says, she 'put together those two words, cystic and fibrosis, with something that I had'. At school, she kept her illness hidden, taking her medication at home. She was popular; joined the Brownies, then Guides. 'I'm a very level-headed person, but I keep a lot in my mind. I remember when I was younger thinking: 'There's no point telling people about this because everyone is dealing with something. I'm nothing special.' I just got on with it.' Roughly one in every 2,500 people are born with cystic fibrosis in the UK, Australia and the US. 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'Luckily, I didn't,' she says, because in the early 1990s, scientists discovered that the camps were a hotbed for the spread of bacteria, present in the lungs and phlegm of children with CF. Many cross-infected each other, some with fatal consequences. Did Hughes struggle to accept that sense of herself, as both vulnerable and a threat? 'Absolutely,' she says. Hospitals implemented a policy of segregation, according to bacteria carried. Hughes has the pseudomonas bacteria, and after her friend's funeral in 1992, she stopped seeing people with cystic fibrosis in case they had different bacteria or bugs that might lead to cross-infection. She has stayed in touch by phone with one old friend. 'We shared growing up in the hospital ward and I do love speaking to him.' But after that funeral, 'I became reckless,' she says. 'I thought: 'Well, life's for living. I'm just going to do what I want.' I didn't care very much for myself. I thought: 'What's the point?' I spiralled.' Her 20s and 30s passed in a blur of 'festivals, partying, travelling when I could, flying by the seat of my pants … ' She had hoped to meet someone, and to have children. 'I thought it would happen. And it never did.' In her 30s, her lung function got so low – 45%, then 36% – that she wouldn't have been able to sustain a pregnancy anyway. 'That was something I tried to grieve. But over the course of a year, I thought: 'I'd rather be alive.' My mantra became: 'I'd rather have a full and short life than a long and unhappy one.' These kinds of philosophical things got me through.' Hughes doesn't have a mantra now – 'other than trying to be funny'. The frequency of her performances range from three times a week to every few weeks, depending on her health needs. But even in her reckless phase, she embodied a stoicism, too. She worked throughout – at a call centre, a radio station, the CF Trust. 'I just had to keep going, pay my bills and mortgage.' Did she ever wonder: 'Why me?' She has had years of spitting out and swallowing mucus – 'constant, constant' – hankies everywhere, non-stop sterilising of stuff, endless medication and pain, unable to take the next breath for granted. As a child, when she went into hospital, there was a faint sense of privilege at being given Lucozade and new slippers, things her sister didn't get. But no one else in her family has the illness. Didn't she feel aggrieved? 'It's a difficult question,' she says. 'I've thought about 'Why me?' in a positive sense – that it was me because I could handle it. Or, I'm glad … because this has made me the way I am.' She has also thought, 'Why at all? Why did cystic fibrosis come into being? Why have this weird disease that just kind of ruins lives?' While Hughes survived childhood by reminding herself that she wasn't special, the differences between her life and others' sharpened as she entered her 40s. She became an aunt, and bore close witness to her peers' life transitions while she kept on being 'just Yvonne – the one that never reached any potential'. 'I couldn't have a career because I would always get ill. I never moved social class. I always remained working class.' Her dad was a welder, her mother a GP receptionist. 'Everything I did, I did myself. But it was day by day, week by week. There was never a plan. I always felt I could never get ahead of myself.' In 2018, aged 45, with deteriorating health, Hughes took redundancy from her job as public affairs officer at the CF Trust. Eating was difficult. Her weight hovered around 7 stone. She braced herself for the possibility of a lung transplant, but as her lung capacity dropped to 30%, she was deemed too ill for the waiting list. 'I was like: 'OK, that door's closed. At this point, there isn't anything else on the horizon to keep me alive.'' She completed an end-of-life form, and met the palliative care team. She thought: 'I'll see my days out with my parents, make memories and know I did well to get to 48.' Then, in 2020, the UK government granted access to a new drug, Kaftrio. Hughes had read about its worldwide trials. When the delivery driver knocked on the door, she told him: 'You're going to save my life.' At that point, her lung function was down to 26%. Within an hour or two of the first tablet, she started coughing. 'They call it the purge,' she says. There was so much mucus – dark, watery and horribly fascinating – she captured it in a cup, put a lid on it, and stowed it in a drawer in her bedroom. 'I kept that cup for a long time,' she says. Maybe she already knew it was a relic. The Kaftrio turned Hughes's life 'a whole 180, literally overnight'. There are side-effects – insomnia, weight gain, which have brought other challenges – but before long, she says, 'I could breathe again without coughing. I went back to work within the year. I could run, I could dance, I could speak, I could stand up straight and cook. I used to always be bent over, catching my breath. And then all of a sudden that was gone. It was a miracle.' Energised, she decided to enrol in an evening course. Acrylic painting, maybe, or playing the keyboard? But at the University of Strathclyde's Centre for Lifelong Learning, it was the flyer for comedy that caught her eye. 'I had always loved going to gigs. Something clicked and I enrolled.' She performed a five-minute set for the course finale – and immediately wanted to do it again. 'I started applying for clubs, Monkey Barrel and the Stand Comedy Club [both in Edinburgh]. I got Red Raw [the Stand's beginners' slot] and went from there. I want to change my life,' she says, 'and I am doing comedy to see if I can change my life.' Nearly four years ago, Hughes met her partner, Alan, online. Having spent a lifetime feeling unable 'to rely on a future', she has had to learn to picture one – and to override her old instinct to absent herself to mitigate later losses. Sometimes, this means catching herself in the act of 'pulling back' from Alan, and letting the pleasure she takes in his company teach her to quiet her mind. Life now is so different, it requires a conscious effort to remember how hard it was from one moment to the next. 'I used to breathe so shallowly that I had to take a – haa! – sharp intake of breath – to feel I was breathing,' she says. The sound punctuated even the simplest actions – after getting into a car, for instance, after reaching for her seatbelt, after pulling it across her, after fastening it. 'Now I can get in the car, pull the seatbelt over and go. I can walk and talk. I can laugh without wetting myself or going into a convulsion of coughing, pulling a muscle or breaking a rib,' she says. 'It is a horrible, horrible disease. It suffocates you. It takes every inch of your breath away. And now it is something I can live with and not die from. I'll probably live to get my pension.' Comedy has brought 'fun, joy and laughter' back into Hughes's life. But it has also given her something that nothing else has. 'I had never found anything for me in my life. I'd never married. I had no children. So I had no community. Nothing,' she says. 'There were people getting their careers and their lives sorted. Comedy was the one thing that was for me. And it still is. Just for me.' Yvonne Hughes: Absolutely Riddled is at Snug at Gilded Balloon Patter House, Edinburgh, until 15 August
