Latest news with #unpaidcarers
BBC News
19 hours ago
- Health
- BBC News
'Caring for mum is a constant worry', says Eastbourne teenager
A teenager from East Sussex is joining a protest at Parliament from home via video screens on Tuesday because his caring duties mean he cannot travel to Davis, 15, from Eastbourne, is joining unpaid carers from around the country who say planning a holiday at this time of year feels "like a pipe dream" because of a lack of respite support. A new study by the Carers Trust shows almost one in three unpaid carers rarely take a respite break with a lack of downtime leaving 60% reporting feelings of Department of Health and Social Care said it was giving billions of extra funding for unpaid carers and an independent commission had been launched to bring wider reforms. Oliver became a carer when he was eight years old after his mum Wendy collapsed unexpectedly at home, leading to open heart surgery and a mechanical heart being years later a stroke led to Wendy losing some mobility in her right hand said he had always been happy to look after his mum, but he did not realise he was a young carer for several years until someone told him that support and recognition was available."It makes a huge difference," he said."Having someone to talk to, who understands what you're going through and has an idea of what you need is really helpful."He said help could be counselling, other carers to talk to or "activities or trips which take you outside of your normal life"."It can feel constant, like it's your whole life caring sometimes," he added. "In the mornings you care, when you get home from school, you care. Having those breaks is key to living rather than just caring."Oliver said that caring didn't mean just doing the dishes, washing clothes and hoovering, as there was a "huge mental side effect as well, where you're constantly worrying about the person you care for"."It's a feeling that drags you down sometimes, that you need to be there for that person all the time," he said. "Having support really does lift that weight off you." 'Huge responsibility' His mum Wendy said Oliver was a very caring person who never complained, but she was grateful he could be supported to have some days out without her where he could "just be a kid".She added: "It's such a huge responsibility, I couldn't imagine at his age doing what he does. I'm so proud of him." Kirsty McHugh, CEO of Carers Trust, said it was "incredibly disappointing" that the UK Government still hadn't given unpaid carers a right to respite and that it "seemed to have forgotten unpaid carers" as it works to strengthen employment said: "For decades, successive governments have depended on unpaid carers to provide social care on the cheap, which has delayed the need to come up with long-term funding and support."In a statement, the Department of Health and Social Care said: "We value the immense contribution of all unpaid carers. To help social care authorities support carers we are providing a funding boost of up to £3.7 billion this year – which includes help for unpaid carers."We have also increased the Carer's Allowance earnings threshold by around an extra £2,000 a year – the biggest rise since it was introduced in 1976 - and are reviewing carer's leave to see whether further help is needed."As part of wider reforms, Baroness Louise Casey has begun her work on the Independent Commission into Social Care, which will include exploring the needs of unpaid carers."
The Guardian
30-06-2025
- Health
- The Guardian
Carers like me connect patients and doctors – so why are we so often made to feel invisible?
It's autumn 2024 and I'm talking to an A&E doctor. We're on the refreshment break at a conference about care. He tells me that he and his colleagues keep their NHS lanyards visible when they take loved ones to medical appointments. It means the doctors listen to them. It's understandable; they're peers with shared training and expertise. But it's also infuriating because I know Mary's story and many more like it. Mary is 58, and lives in Wales with her husband and their adult son. As a result of epilepsy in infancy, her son has global developmental delay. Practically, this means that he is non-mobile, non-verbal and takes food through a tube to his stomach. I worked with Mary and 15 other unpaid carers last year, supporting them to keep weekly diaries and interviewing them, resulting in a research report. Mary's son requires medication to prevent excess drooling. He can't stop himself choking, so it's essential to minimise his saliva production. But in her diary, she explained that the medication was changed and the new type was less effective – he was having dangerous coughing fits. Mary reported this to his medical team but, in her words: 'It was a feeling of, if it wasn't witnessed by a health professional it didn't happen.' A few weeks later, she had a meeting in her home with some of his care team. 'I was just lucky that he performed,' she told me with a wry, tired smile, by which she meant he had a coughing fit in front of the professionals. His medication was swiftly reverted. I wish Mary's story was unique. But it's not. Ada is 80 and also cares for her son. He's in his 40s, and has autism and several other conditions. She had been warning medical professionals about his escalating panic attacks for months, but nothing had been done. In one incident, he became so panicked that he ran away from his daycare centre and had to be located by police. At other times, when it's just Ada and him at home, things can turn violent. Still, Ada told me that her concerns were dismissed. She was only believed when, by chance, a psychiatrist happened to witness one of these panic attacks. 'He said it was one of the gravest attacks he had seen.' To be an unpaid carer is to be deemed not credible, according to Mary, Ada and several other carers in this study. Mary feels this is especially apparent higher up the professional ladder. The community-based staff listen to her, perhaps because they see what she does for her son on a daily basis. But of consultants and doctors, she said: 'I'm lucky if they'll even look at me.' Yet it is Mary who has been at every medical appointment for her son during his 26 years. It is Mary who spends 15 hours in every 24-hour period providing care for him (alongside her part-time job and the paid care he receives). It is Mary who spots side effects, monitors symptoms and administers medications. It's not just about feeling respected; for carers such as Mary and Ada, being heard is a matter of life, death and safety. Of that meeting at which her son 'performed', she wrote that there had been too few chairs to seat all the attenders, so she perched on the periphery. 'The irony that there was no room for me at the table was not lost.' Family members provide far more than hands-on care at home in the absence of paid workers – their unpaid labour is woven through the entire health and care system and at all times. At the most basic level, they perform a high volume of administrative tasks, made harder by disjointed and complex systems. In fact, the carers in the study spent up to 220 hours over 12 weeks on these sorts of tasks for the people they are caring for. The diaries read like broken records – endless arranging and rearranging of appointments, prescriptions and finances, automated phone services that lead to dead ends, digitised forms that aren't fit for purpose. 'I wish that we did not move in circles,' wrote Philippa, 86, and caring for her 60-year-old son, after a long week trying to sort out his future care. In a cast of changing medical and care professionals, family members also act as essential living repositories of their loved ones' medical histories. Jared's wife had an industrial accident in 2011, after which she was in a coma. Jared told me that her medical notes were about 900 pages long. Medical professionals have rarely, if ever, had time to read all of the notes. In this context, Jared becomes indispensable as 'the only one who can say, well, this happened in this order'. Beyond project management and medical histories, carers also reported enabling what professionals call 'person-centred care', ensuring that the personality and preferences of their family members are understood. Lisa's mum is 75, and has diabetes, multiple sclerosis and cognitive decline. She is supported by a live-in paid worker. Lisa settles in the paid workers when they rotate. She does this practically – showing them where things are in the house – but she also communicates 'the nuances of Mum … I want to get across to them that they are going to see the worst side of her, but she's not that.' She tells them about the dinner parties her mother used to throw, her flirtatious and bubbly nature. 'She's such a different person now that you want her care workers to understand who she was.' Throughout the interviews and diaries, carers such as Lisa explain repeatedly how they lubricate the system, enabling it to function when care-receiving loved ones cannot. They are the unseen but essential lifeblood of the health and care system: it's not about them, but it does not function without them. Since being a carer myself, and subsequently writing a book about carers' experiences, I have developed a keen sense for when a policymaker, politician or simply a member of the public has failed to understand the contribution of carers. The Labour party manifesto last year was a case in point. It managed to set out a plan on care yet omit carers, that is, the people who perform the vast majority of care in the UK. Subsequent governmental announcements fall into the same trap, paying carers cursory attention. While we wait for politicians to catch up with reality, perhaps carers need to pirate those NHS identity cards. I'm not serious, of course. But I think, too, of Mary, Ada and all the other carers I've met, walking a tightrope of their loved ones' safety on a daily basis, steeped in loving and practical knowledge. It shouldn't take a piece of laminated card for them to win legitimacy. Emily Kenway is a social-policy doctoral researcher at the University of Edinburgh and author of Who Cares: the Hidden Crisis of Caregiving and How We Solve It
BBC News
17-06-2025
- Health
- BBC News
Plan to support 'hugely important' unpaid Peterborough carers
A council has suggested awarding £1.7m to services that support "hugely important" unpaid carers in a City councillors were being asked to authorise contracts for £1.14m to a service supporting adult carers and £566,000 to one aimed at helping young carers.A council report produced ahead of a meeting on Tuesday said there were 608 active carers in the city, of which 146 were young carers aged under the age of said support for carers was important to ensure "[They] are recognised, valued, and supported to maintain their caring role as long as possible". It cited research suggesting that unpaid carers contributed £162bn to the economy in England and Wales each report said: "It is widely acknowledged that unpaid carers provide a hugely important role in saving the economy money, and they should be suitably supported." 'Feeling overwhelmed' The contracts would be awarded for up to five years to Making Space, an organisation supporting adult carers, and Centre 33, which supports children and young report said many carers reported "feeling overwhelmed at the start of their caring journey" and wanted to be able to access information and advice more said young people making the transition to caring as an adult often found this challenging, while carers of all ages expressed the need to take a break from their providers would give carers an introductory pack explaining the basics of how to navigate the council also said the providers would identify carers at risk of domestic abuse and introduce an evening carers' group for those working during the day, "ensuring the groups reach a broader range of carers".The council's cabinet has been asked to authorise both contracts at its meeting on Tuesday. Follow Peterborough news on BBC Sounds, Facebook, Instagram and X.
BBC News
14-06-2025
- Health
- BBC News
Angelman syndrome: Mum does press ups to help her care for son
The mum of a disabled five-year-old does press ups every morning in order to be able to care for him but is scared of what will happen when he gets too big to manage alone. Ivor has Angelman syndrome, a rare genetic condition that affects the nervous system and causes severe physical and learning mum Sarah, from Monmouth, is among 310,000 unpaid carers in Wales and a recent report found "serious gaps" in how care is valued, supported and delivered across the country. The Welsh government said it was vital for parents to get the support they needed. Ivor's condition affects about one in every 15,000 people and means he needs constant supervision, struggles to sleep through the night, cannot speak, understand the word "no" and is not toilet trained. Sarah, 44, said he was a happy, growing boy who loves to cuddle, walk and play, but she needed to stay fit to keep her strength up as he gets bigger. She said: "I actually already feel I'm almost at max, which is pretty damn frightening given I'm only two years into this this whole new world." Some with Angelman syndrome end up needing two strong carers with them all the time, which seems "extravagant" she said, until you see what it takes to keep them said: "I'm just taking it a month at a time, but there is going to come a point where we're going to have to ask for extra help in that respect." "The longer I can do that, the more Ivor can develop, the more I can guide and help him to actually learn to use a step, to get in and out of the bath. "So Ivor and I are kind of like blossoming together and trying to find our own way because we just have to," she said. Sarah said continuing to work as a solicitor had given her a sense of balance and stopped her from becoming "saturated" by her son's disability and what may lie ahead."Everything had been pretty run of the mill pretty normal, very joyful and then you think, 'Oh, my goodness, this is a parallel world like I had no idea existed'."She was suddenly "carer" and had to deal with a myriad of hard-to-navigate forms for medical and social care. "It's like a bomb hit, and I'm fairly on it," she laughed. "The amount of stuff you've got to do... medical appointments, or just extra stuff like forms to fill in, grant applications, blue badge applications."She described disability living allowance forms as a "complete headache", particularly on top of caring responsibilities and looking after the rest of the family. Sarah said she had a "deep sadness" for her daughters, Bethan, 11, and Olwen, seven, and worried they get less time with their parents. "Ivor pinches, he bites and pulls and messes things up... he's not a normal brother," she said, adding her daughters are also his carers and give her "emotional support".Ivor is now in primary school with his sisters which Sarah said has "helped tremendously" in managing her work and administration of her son's care. Sarah has scaled back her career as a solicitor to part-time, saying caring for Ivor was a full-time job. "He will always need me, and in weird way that that fills me with joy at the same time as worry, because I will always have a real purpose in my life."She said the one thing she would change would be the "black horror" of a three-year wait for Ivor's diagnosis, and as a campaigner for Foundation for Angelman Syndrome Therapeutics (Fast) has called for a heel prick test for genetic conditions in all babies. She has been joined in these calls by former prime minister Lord Cameron, and said an earlier diagnosis would have given Ivor access to "crucial" therapies. How to help carers? Sarah said Ivor's use of touch and eye contact as communication could be intimidating for once you get to know him, as many people do in Monmouth where she and Ivor often walk around town, they find an "innocent nugget of joy", who has had a profound effect on Carers Trust said three in five people would be a carer at some point in their lifetime. A survey of 2,3000 UK families raising disabled or seriously ill children by the charity Family Fund found 44% struggled to meet day-to-day living costs, despite receiving disability benefits. Responses from more than a quarter suggested signs of clinical depression. Family Fund gave financial help to Hannah Leonard, 41, a social care worker looking after a her severely disabled daughter Darcy, six, in Rhyl, has achondroplasia, a bone growth disorder that causes is autistic, with epilepsy and dysphasia, which makes it difficult for her to talk, and also has no sense of danger. She is already nearly as tall as her mum. "There have been incidents where she has slipped my hand, and she has ran towards an main busy road, and I literally thought, 'I'm gonna lose her here'," she said. "Luckily, the grace of God or whatever it was, she turned."There's no rest time, our doors have to be locked because she's looking for food or she's trying to climb," Hannah said. "You're always on high alert."Parents of children with autism or neurodiverse children have stress levels proven to be that of a combat soldier." Hannah said her pension-age mum still help with the "things I can't do" and they got "very little help" from the NHS or local said she had been waiting a year for a social worker and was paying £300 per month for private speech and language therapy, alongside 60-mile (97km) round trips to Liverpool for trampoline physiotherapy to help with her balance. "I think we will need assistance somewhere later on down the line," she said, adding Family Fund paid for a tablet device that helps Darcy to communicate. "Unpaid carers keep this country up," she said. A report published last week, the first of its kind in the UK, found serious gaps in how care is valued, supported and delivered across Cymru, the Bevan Foundation and Carers Wales published a review of how well Welsh government policies supported carers and care workers – both in adult care and said the care system was stretched to breaking point and that Wales falls short on the implementation of almost every aspect of care policy, with patchy progress, disjointed systems and too many people slipping through the keeps Wales running, it said, but many of those providing the care were struggling financially, had poor health and wellbeing and had to cut back on food and heating. The Welsh government said it was "vital" parents received the support they needed alongside health and social care systems. It said: "We've provided £5.25m this year to maintain our short breaks scheme which has enabled more than 30,000 unpaid carers to have a break from their caring role to pursue a hobby or enjoy a social activity, and the carers support fund which provides carers with emergency financial assistance." Additional reporting by India Pollock, BBC Wales social affairs correspondent
BBC News
14-06-2025
- Health
- BBC News
Unpaid carers in Coventry to enjoy free hotel stays
Unpaid carers in Coventry are being offered free hotel stays and leisure experiences as part of a new scheme aiming to support Coventry wants to give carers the opportunity to prioritise their own wellbeing, take a step back, and enjoy some much-needed relaxation, co-ordinator Michalina Kryska Abbey Hotel and Coventry Rugby Club are the first organisations to get involved the council-funded Mackey, 36, who started caring for her father Hugh Mackey last year, has taken part in the project and said enabling carers to have these opportunities was "brilliant". "When you become a carer, you have to adapt your whole life including your relationships with the people closest to you, which can be really challenging – especially as you often have to make the decision overnight," she said."I wouldn't have done it differently, but it gets to a point where you'd never actively seek a break for all sorts of reasons, so this initiative, in making it easier for carers to access some great experiences in the local area, is absolutely brilliant."The hotel is offering an overnight stay to carers on a monthly basis and the rugby club are providing free tickets to first-team matches at Butts Park Arena as part of the initiative also funded with money from the Department of Health and Social Care for the next two Kryska said she hoped more city organisations and businesses would get involved."One of the things carers tell us time and again is how much they need a break, yet finding time for themselves can be incredibly difficult," she said."MyTime gives carers the opportunity to prioritise their own wellbeing, take a step back, and enjoy some much-needed relaxation. It can be a real boost to mental health."For many carers, simply organising an evening off can be complicated... The response so far has been overwhelmingly positive. We're excited about the possibility of expanding it even further to support more carers and their families."About 27,500 people are estimated to have caring responsibilities in Coventry, according to the city council. Follow BBC Coventry & Warwickshire on BBC Sounds, Facebook, X and Instagram.
