Latest news with #RoyalHospital
Telegraph
7 hours ago
- Health
- Telegraph
I'm facing paralysis at 29 but the NHS won't operate
My left side is numb and almost impossible to move and my hands feel so weak I can't even hold a phone. I have nerve pain all over my body that feels like it's being constantly rubbed with nettles or having acid thrown on me. I am 29 years old and have Ehlers-Danlos Syndrome, a rare but under-diagnosed condition that affects as many as 268,000 people in the UK – up to 90 per cent of them women. There is an operation that I could have to address my symptoms but it isn't available on the NHS or anywhere in the UK. I wouldn't wish this on anybody – the pain I feel is exhausting, constant and often terrifying. Most people have never heard of EDS but it's a genetic condition that affects the collagen in your body, making connective tissues like skin, ligaments and blood vessels very soft. The connective tissues are so weak that my neck is no longer able to support my head. My skull presses on the brainstem at the top of my spine causing severe neurological symptoms. Brainstem compression like mine can lead to paralysis because it disrupts vital signals between the brain and the body – which terrifies me. When the pain gets really bad, especially in my face and my head, my left eye hurts so much that I almost want to tear it out. It affects my vision too. Coping with the pain Despite my disability, I was working until a few months ago. I was an administrator at the Royal Hospital for Neuro-disability, close to where I live with my dad and his partner – who I call my stepmum – in her flat in Putney. I loved being with the patients, being creative, coming up with activities that paralysed people could do, like tie-dyeing and birdwatching. I put a lot of love into that job. But my condition deteriorated and in the end I had to stop working. Now I spend time alone listening to audiobooks – sitting up to read causes too much strain – occasionally seeing a friend and resting. What scares me most is the thought that my life will be just this pain and even paralysis. When it's excruciating, I have dark thoughts but wouldn't act on them because I have family and loved ones, and don't want to hurt them. The diagnosis I was diagnosed with EDS in my early 20s but looking back I've been unwell since my teens. At first my doctors put the pain down to anxiety, saying it was all in my head and that I was overemotional. It's true, I was very stressed as my parents were getting a divorce; I had an eating disorder and was unhappy at school. But if you're in excruciating pain, you're obviously going to be crying and asking for help. As a child my life was pretty normal but I was always hypermobile as a kid, which is common in people with EDS. My left leg would bend inwards but I wasn't in any pain. People with EDS often suffer from dislocated joints and though my joints would partially dislocate, it never really bothered me until I was 16, when I started getting pain in my spine. With EDS, you often become more symptomatic as a teenager and in your early 20s. When I was 20, they finally said, 'Oh, you've got fibromyalgia.' I began subscribing to the magazine of a charity, Fibromyalgia Action UK, which had an article about EDS and how some people with it were being misdiagnosed with fibromyalgia. There was a list of symptoms and an explanation of the Beighton score – an assessment tool used to measure joint hypermobility, or excessive flexibility – and I thought, 'Oh God, that's me!'. I contacted the doctor who wrote the piece, and he advised me to get a referral to an NHS rheumatologist, who confirmed that I did indeed have Ehlers-Danlos. I was then referred to University College London Hospital for pain management and physiotherapy splints, which I wore on my wrists and ankle. My neck pain wasn't so bad then, but I've had to use a neck brace to support my head since the nerve pain started increasing when I was 25. Living with the condition I studied international relations at the University of Sussex, but had to come back to London and study from home with the Open University. It took me six years to graduate. By then I had reconnected with a friend from school and we became a couple. We rented a flat and he looked after me full-time, getting a carer's allowance, because I had to use a wheelchair, and needed help to wash and get dressed. He was amazing and put up with a lot during our seven years together, but it just got to the point where I was too unwell to be in a relationship. Now I live with dad and my stepmum and they have been amazing. Hope for an operation The operation to address it isn't available on the NHS, or anywhere in the UK, for people with EDS because of debate about its effectiveness, even though specialists in Europe and the US are convinced it's very likely to help. My hope is to see one of these specialists in America. My Dad has sold his house at 75, raising £70,000, and my aunt has given me £10,000 of her savings. It's only with their help that I can even think about going to the States for the operation. The surgery will fuse the vertebrae in my neck so it supports my head better, which will ease the pressure on my brainstem, to relieve the nerve pain and stop my other symptoms, including seizures. The surgeon I'm hoping will operate has a 90 per cent success rate. We're still well short of the £150,000 I need for the surgery and travel but I refuse to let this condition ruin me and have set up a GoFundMe page so that I can pay for it. Why the NHS won't operate To be honest, I feel gaslit by the NHS. I was given an MRI lying down, which didn't measure the full stress on my neck. After I paid for a private upright MRI, specialists in the US and in Europe said its results confirm my condition. But the NHS disregards this, even though it did perform this operation on EDS sufferers until about 2017, and a study was being done into its benefits, but all that stopped before the pandemic. Now, no British doctor will give me a diagnosis, even though one referred me to the US surgeon who will now hopefully operate. I'm hoping I can eventually go back to my job, even if it's part-time, and be free of the terror of being paralysed. Despite all I've been through I haven't given up on life – or love. I recently met someone online, who seems to genuinely like me – being unwell filters out insincere people – and we've had a few picnic dates where I've been able to lie down and talk to him. I'll never be a mother because I don't want to pass on the EDS, which there's a 50 per cent chance of, but he has kids so, who knows, maybe one day I can be a stepmum to them? I won't have the life most women my age dream about, but I have hope that I can live a good and happy one if I get this surgery, avoid paralysis and am no longer in this horrendous pain.
Yahoo
14 hours ago
- Health
- Yahoo
Soaring numbers of Inverclyde kids going to A&E for emergency dental treatment
SHOCKING new figures show the number of children in Inverclyde needing emergency treatment for tooth decay has soared. The statistics, released through freedom of information legislation, show the number of patients under 18 attending both Inverclyde Royal and the Royal Hospital for Children has doubled in the last five years. Health board figures also show that in total 133 men, women and children attended Inverclyde Royal for dental care over that period of time. Across Greater Glasgow and Clyde, there was a huge 109 per cent increase in hospital attendances for emergency dental treatment - and nearly a third of all visits to A&E for issues relating to tooth decay were by children. The figures underline the crisis in NHS dental provision in Inverclyde, with increasing numbers of local residents forced to travel miles to find an NHS dentist as local practices shut down or close their NHS lists to new patients. Inverclyde MP Martin McCluskey says he fears the new figures are only 'the tip of the iceberg'. (Image: George Munro) In response to the local crisis, which saw Inverclyde labelled a 'dental desert', funding was made available to encourage practices to open up in the area. Plans for a new practice in the Waterfront Retail Park were approved by Inverclyde Council earlier this year, but Mr McCluskey says he believes the crisis in local NHS dentistry is undermining years of efforts to improve children's teeth. Following his FOI request, Mr McCluskey told the Telegraph: "People across our area know from their own experience how difficult it is to find a dentist. 'These figures demonstrate beyond doubt that the SNP are asleep at the wheel when it comes to dental care in our area. "The Scottish Government have promised time and again to reform the NHS and get to grips with the health and social care crisis, and time and again they have failed. 'So much work has been undertaken over the years to improve children's teeth and to set them up for the rest of their lives. 'This risks being undone by poor access to dentistry and a system that is creaking locally. READ MORE: Inverclyde patients face 36-mile round trip to sign up with NHS dentast as local crisis deepens Inverclyde dental crisis sparks calls to bring back local emergency clinics Dentist reveals hopes for new Greenock practice - along with planned opening date Inverclyde 'dental desert' crisis highlighted in Scottish Parliament debate "These statistics are likely only the tip of the iceberg. I expect many more children will have been treated as emergency cases at local dentists. "These cases represent the most extreme situations where children have clearly been left in so much pain that parents have had no other option than to taken them to A&E." In June 2024, emergency dental clinics in Greenock Health Centre were piloted for a short time following the closure of MyDentist in George Square. Mr McCluskey launched a campaign last year to improve NHS dental provision in the area after the Ardgowan Practice in Greenock stopped treating patients on the NHS, blaming government underfunding and a rise in running costs. He added: "It is clear that this situation, already bad before the pandemic, has been allowed to deteriorate since then, and this will continue unless pressure is applied to force the Scottish Government to act.' (Image: George Munro) A Scottish Government spokesperson said: 'Our commitment to improving NHS dentistry means communities in Inverclyde and across Scotland will benefit from an increase of almost 15 per cent in funding for primary care dental services planned this year - taking total funding to over half a billion pounds for the first time. "It also includes investment of up to £3 million to improve access and support the NHS dental workforce.' They went on to highlight the flagship Childsmile programme focuses on ensuring every child in Scotland has access to high-quality dental services. The spokesperson added: "The latest National Dental Inspection Programme figures show that 73 per cent of children in Primary 1 have no obvious tooth decay compared with just 58 per cent when it was introduced in 2008. 'The gap between Primary 1 children with no obvious tooth decay living in the most and least deprived areas is the lowest on record. Soaring numbers of children in Inverclyde are attending A&E for emergency dental treatment, new figures have revealed. (Image: Canva) 'Whilst we have more work to do, it's worth noting over one million patients were seen by an NHS dentist between January and March 2025, and Scotland is the only country in the UK that offers free, regular dental examinations for all." A spokesperson for NHS Greater Glasgow and Clyde said: " We are continuing to work with general dental practitioners and colleagues within Inverclyde HSCP to identify initiatives to support access to emergency dental care. "Inverclyde also remains an area where Scottish Dental Access Initiative (SDAI) funding is available to support new practices opening in the area, and this initiative has led to one formal application being progressed through due process."
ABC News
17-07-2025
- Health
- ABC News
'Health is a big issue': What's on Tasmanians' minds as they head to the poll this Saturday
Ben I'm a nurse and I currently work in the hospital and I have first-hand experience of how dire the situation is. We've got chronic underfunding, chronic under-resourcing, chronic underpayment of staff. We're not being paid enough so we're unable to attract staff. So we can't staff wards appropriately, we can't staff units. That includes nurses, doctors, allied health, pharmacists, like admin as well. Across the board we've been perpetually underfunded for the last ten years. Leon Compton One issue you'll be thinking about this state election on Saturday? Anne Well I think I've already given you a hint, I'm definitely going to be thinking a lot about health. Leon Compton And about health policy and about the future of investment in healthcare systems? Anne Oh definitely, because we have not enough staff, hospital staff. The Royal is definitely very, very understaffed and under-resourced and because I spend a lot of time at the Royal Hospital, because I'm a transplant patient, I really think a lot about health. I mean there was an article in the paper a while ago that said that people were being put in a cupboard at the Royal and I thought, yes I've been in that cupboard. So they're actually using resources that are not appropriate for what they're designed for. Leon Compton You've literally been put into cupboard space in order to receive treatment, Anne? Anne It was a very fancy cupboard, it was an under the stairs cupboard, but it definitely had a sense of light and every time you saw it you had to wave at it. Leon Compton Wow. Kelly Yeah, health is a big issue. We are an older population, we are sicker, we've got a bigger health load. I worked in health for nearly 40 years, I'm retired. And this government, this has consistently scunned out the health system. It's always about cutting, never about improving. Tegan I don't really like Liberals or Labor at the moment, I'm going for the Greens. Leon Compton Right, is that a new thing for you Tegan or have you been there before? Tegan No, it's been a while coming. The Liberal Party and the Labor Party just don't have what I need for what's going on with my family going forward. They don't have any policies regarding transgender health. And if they do, they're weak, so the Greens it is. Romeo Well I suppose those who are really interested in the welfare of the people are the ones I go for.
7NEWS
02-07-2025
- Entertainment
- 7NEWS
As Holly Valance splits from billionaire husband, a look into their property empire
Holly Valance, the Australian actress and singer who rose to fame on Neighbours, has reportedly split from her husband of 13 years, British billionaire property tycoon Nick Candy. In the 1990s, together with his brother Christian, Mr Candy began building a formidable property empire, which has since been punctuated by record-breaking developments like the £1.2 billion (AU$2.502 billion) One Hyde Park in London's ritzy Knightsbride. The couple, who share two daughters, met in 2009 and were engaged two years later. They married in a lavish AU$6 million ceremony in Beverly Hills in 2012. Naturally, the family have enjoyed quite the luxury lifestyle, with a property portfolio that spans some of the world's most exclusive locales. So if you've ever wondered where luxury property developers like to call home, we take a look at the notable properties they shared during their marriage. One Hyde Park Penthouse, London At the pinnacle of their property portfolio is the duplex penthouse at One Hyde Park, one of London's most prestigious addresses and 'one of the most exclusive and secure residential developments in the world,' according to the Sotheby's International listing. Spanning 18,000 square feet over the 10th and 11th floors, the ultra-luxury home features five bedrooms, an eight-metre-high reception room, a Japanese-themed kitchen, private spa, gym, cocktail bar, home cinema, and a wraparound terrace with uninterrupted views over Hyde Park. The principal suite alone covers 2,300 square feet, complete with dressing rooms and twin bathrooms featuring Jacuzzi-style pools. Despite its grandeur, the couple reportedly spent only about 20 days a year at the penthouse. In 2018, Candy sold the property for £160 million (AU$333.6 million) to offshore companies under his control so he could remortgage it with an £80 million (AU$166.8 million) loan. The penthouse was listed for £175 million (AU$364.9 million) in 2021 and remains on the market, making it one of London's most expensive apartments. Gordon House, London Another impressive residence is Gordon House in the coveted south-west borough of Chelsea, a Grade II-listed property built in 1809. Set on acres of grounds that form part of Chelsea's Royal Hospital, the property was acquired by Christian Candy in 2012 along with two neighbouring properties. He began renovations and then gifted the soon-to-be mansion to Nick Candy in 2014, who lived there with Ms Valance and their girls. The estate underwent extensive renovations to turn it into a luxury home, including the addition of a 14,000-square-foot subterranean lifestyle complex - essentially a basement featuring Europe's first private IMAX cinema, a wine cellar, and a leisure centre with swimming pool, sauna, cold plunge, dance studio, treatment rooms and even a bowling alley. The entire property now spans 40,000 square feet of internal space, including a two-storey guest house with a double-height courtyard and retractable glass ceiling. Cotswolds estate, Oxfordshire, UK In 2021, the couple purchased a £10 million (AU$20.85 million) Georgian heritage estate in the Cotswolds, described as a 'home sweet home' in the Oxfordshire countryside. The stately seven-bedroom property is a short drive from trendy private members club Soho Farmhouse, where Meghan Markle held her three-day hen's party before marrying Prince Harry in 2018. Set on nine acres, it features a Grade II-listed main house, guest cottages, pool, stables, tennis and squash courts, plus its very own chapel. Mr Candy told UK Mail Online in 2021 that he, Ms Valance and their children had been yearning to live in the countryside and were thrilled with the purchase. 'We have been looking for years to get something in the Cotswolds for the family, and finally, a year ago, we found a gorgeous family home in a wonderful village,' he said. 'We're very immersed in our quiet country life at weekends and adore the friendly and welcoming village.' The area is no stranger to wealth and celebrity status. High-profile personalities who have also bought in the area include Kate Moss, Lily Allen, Hugh Grant, and famously, David and Victoria Beckham. Beverly Hills mansion, Los Angeles The couple's Beverly Hills pad is the epitome of a glamorous, international lifestyle in luxury real estate. The modernist mansion in LA's Holmby Hills is known as The Reserve, designed to reflect 'tranquility and peace'. Beyond the swaying palms, you'll find ceilings that are 14-feet high, with floor-to-ceiling windows overlooking landscaped gardens and the 50-foot swimming pool. Other highlights include a lush master wing, wine room, elegant Art Deco Hollywood bar and plush 1920s French Regency-style cinema. There is also a pretty spectacular kid's play room. Of course, there is also a separate 10,000-square-foot, three-storey guest house, which hardly fits the definition considering it has five bedrooms, a gym, spa and carport. According to Mansion Global, many of these luxurious features were added by Mr Candy, who bought the estate from his brother in 2018. He paid US$28.5 million (AU$43.3 million), according to Zillow. Mr Candy listed the property for US$85 million (AU$129 million) in 2022. It is still on the market, after a US$10 million price cut in 2024, and a further US$10 million cut this June to US$65 million (AU$98.8 million). Ms Valance found fame on Neighbours as Felicity 'Flick' Scully before launching a career as a pop star after moving to the UK in 2002. Her debut album 'Footprints' produced three hits, including Kiss Kiss, which charted at number one in the UK. The actor, singer and model then turned her sights to Hollywood, appearing on TV series like Prison Break and Entourage, and even landing a role in the Liam Neeson film Taken.
Times
22-06-2025
- Health
- Times
My child with cancer goes to private school … so he can't learn in hospital
Councillors have been accused of 'bashing' private schools that refuse to provide lessons for their pupils when they are ill in hospital for months with cancer. Parents who pay for education have described how their children are prevented from joining state-school patients in the ward classroom at the Royal Hospital for Children and Young People in Edinburgh. Privately educated children with cancer, and other serious conditions, are excluded from the hospital teaching service unless a fee of £115 per hour — more than double the typical cost of cover teachers or home tuition — is paid by the families or their schools. In an escalating row Edinburgh city council has written to all private schools in the capital to remind them of this situation. The council is also writing to the Scottish government, asking if it plans to review its guidance on the matter, which the city claims to be following.
