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BBC News
25-04-2025
- Health
- BBC News
Frimley NHS trust pioneers treatment for thyroid eye disease
A Surrey health trust says it is to become the first in the UK to trial a drug for a debilitating eye Health NHS Foundation Trust has recruited its first patient for a weekly injection to tackle thyroid eye by an overactive thyroid gland, the disease can cause eyes to feel dry and gritty, become bulging and swollen and sensitive to light, and can lead to blurred or double vision, according to the new treatment will involve patients injecting themselves with pre-prepared syringes over the course of 24 weeks, rather than having to make regular visits to hospital. The drug being trialled, Efgartigimod, reduces the antibodies thought to trigger the Anuradha Jayaprakasam, consultant ophthalmologist and principal investigator for the research study, said she had seen the "devastating side effects" of the condition."Rather than dealing with the problems that have happened, they can have a drug such as this which would prevent the condition escalating," she said. "The drug has the potential to impact on all aspects of the disease, including the appearance changes, and potentially prevent the disease advancing to the level of sight loss."It is a great motivation for me to be involved in work that could change the course of the disease for many of our patients."
BBC News
05-04-2025
- Health
- BBC News
Hertfordshire girl with MLD 'could have been treated if screened'
Imagine if there was a treatment available that could save your child's life, but as soon as you discover that they need it, it is too late to is the heart-breaking reality faced by Emily and Sean Stock, from Hertfordshire, regarding their two-year-old daughter Lily. She has metachromatic leukodystrophy (MLD), a rare genetic disease which attacks the brain and spinal cord and is progressively robbing her of the ability to move, speak, see, swallow and eat. It will likely lead to the loss of her life between the ages of five and 2023, the world's most expensive drug, Libmeldy, became available on the £2.8m treatment is a gene therapy that can halt the progress of MLD and allow a child to go on to live a full and healthy life, but only if it is used before the child is symptomatic. Lily's parents are calling on the government, for the NHS and National Screening Committee to add MLD to the list of serious genetic conditions that are screened for at birth."The only way we could have saved Lily would have been to know she had MLD before it started to take effect", Emily says."If Lily had been screened at birth, we could have gone on to have treatment in six to eight weeks and prevented everything we're going through now. "To know that is devastating - I never want another family to face this."Libmeldy was first used in the UK in 2023 when it successfully halted the progress of MLD in 19-month-old had been diagnosed and treated in time because her older sister had become symptomatic and was beyond the point of benefiting from treatment."At the moment, this treatment is only really helping families who are already going through the heartbreak of knowing they are going to lose one of their children anyway," Emily adds: "This isn't just about Lily; it's about the many more children that will come to suffer with this if something doesn't change. "We're going to do everything we can to make sure it does change." Emily and Sean now face an anxious wait for the result of screening on Lily's five-year-old brother Arthur. The odds of carrying MLD are 40,000 to one. It's only if both parents carry it that MLD can be passed onto their child, with a 25% chance of that happening per and Sean became aware they were carriers when Lily was the disease takes hold, an infant's regression is July, Lily, aged 19 months, was developing as expected; she was able to sit up unsupported and was working hard to stand. She would laugh, smirk and smile when praised for her efforts. Eight months on, she is unable to support herself and has to be fed through a tube."She's a beautiful girl, she was a bright little button, she had a wicked laugh", says Emily. Lily's first symptoms were spotted at nursery; she suffered Nystagmus (an involuntary movement of the eyes), her legs were completely stiff with her toes continuously pointing and she wasn't learning to walk."We know there are so many more symptoms to come, that life will only get harder for Lily and that eventually MLD will take her from us far too early," says Emily. Alex, The Leukodystrophy Charity (Alex TLC) supports families with all forms of leukodystrophies, of which there are more than 100 Harrison, its director of support, says only MLD and adrenoleukodystrophy (ALD) are treatable. "Treatment is expensive, but so is the financial cost of caring for these children for the remainder of their lives," she says. "We're talking about young children losing their lives in horrible ways, experiencing some of the worst symptoms imaginable while they are alive."Josh Dean, the Labour MP for Hertford and Stortford, has raised Lily's case in parliament. "I would urge the government, the NHS and the UK National Screening Committee to seriously consider adding MLD to new-born screening", he says."This will do so much to reduce the chances of this happening to other young babies and children"The National Screening Committee is in the process of reviewing the evidence for a screening October, the government launched a study to test over 100,000 newborns for more than 200 conditions, including MLD. The findings "will help improve testing and treatment and help predict, diagnose and treat future illnesses," the government says. Sean's lifelong friend, David Kiddie, from Hertford, is embarking on a 190-mile fundraising Light - between the 10 southern Premier League football grounds and Wembley - aims to raise funds and awareness about the condition. He is due to finish the challenge by facing his fear of heights and abseiling down the Tottenham Hotspur Stadium."Tackling my fear is nothing compared to what Lily and the family are going through", he says. "The financial and psychological turmoil Emily, Sean and their family are facing will continue to escalate."Sean, who is a Tottenham fan, says David's support "means the world" and strangers have been backing the family and the "whole Hertford community". Follow Beds, Herts and Bucks news on BBC Sounds, Facebook, Instagram and X.
BBC News
02-04-2025
- Entertainment
- BBC News
Bradford-born Dynamo thanks NHS for saving his career
The magician formerly known as Dynamo has said he would not have been able to return to performing were it not for the 42-year-old, whose real name is Steven Frayne, who suffers from both Crohn's disease and arthritis, said the pain in his joints became so severe he "could not even hold a pack of cards". He praised the "magic" of the NHS, who helped him manage his health, and recalled the moment he decided to "bury Dynamo" and re-start his career under his real name. Speaking at Advertising Week Europe 2025, the Bradford-born performer added: "I resonate with what the NHS does because I would not be performing again without their help." Frayne was diagnosed with Crohn's disease as a teenager, and later, with arthritis, which had made him feel "like everything I cared about was just being taken away from me"."But in that moment... I realised the magic is actually in everybody else - in the people that lifted me up, in the NHS that helped me, and I started to focus on the magic in other people," he said. Frayne's health troubles compelled him to take a two-year break from his career. After symbolically burying himself alive in a show entitled Dynamo Is Dead, in 2023, Frayne has returned to performing, and is currently in the middle of a residency at Underbelly Boulevard Soho in London. "It's the first ever show I've ever done as myself, not as Dynamo, and it is a very personal show to me," he said."For me it's about creating a show that showcases my magic - and also incorporates the magic of other people - because a lot of the magic in the show is made up by the audience members as we go along, so the show is different every single night." "It's super intimate, but it allows me to really connect with people. I can see every single person's face," Frayne continues."There's moments where every single person in the audience is part of the magic at the same time."Earlier this year, Frayne headlined RISE, the opening event to mark the inauguration of Bradford City of Culture, in which he performed to a live audience of 10,000 at the time, he said: "I don't think any of us in Bradford ever saw this coming, and I think it's very needed. "There's so many parts of Bradford that need support. Some of the areas haven't had the love and support they needed to bring them up to speed," he to highlights from West Yorkshire on BBC Sounds, catch up with the latest episode of Look North.
BBC News
24-03-2025
- Health
- BBC News
Radio host Chris Stark shares testicular cancer diagnosis
Radio host Chris Stark has said he has been diagnosed with testicular Capital Breakfast Show and former BBC Radio 1 host said he had undergone surgery and was "effectively cured" after the disease was caught a social media post on Monday, the 38-year-old said he had taken the past couple weeks off work to have chemotherapy "to best prevent anything from coming back" and said he would be returning to the radio on added "my hope is any bloke reading this will perhaps think to check themselves today" or "go to a doctor if not sure about possible symptoms". Stark said the cancer had been caught after a routine trip to the doctor a couple months then had surgery "pretty quickly," followed by chemotherapy."The reason I want to share this is that I feel like an idiot that I didn't spot this sooner," he stressed that the cancer was "so, so treatable" if caught said it was a difficult subject to discuss, but that he hoped sharing his diagnosis "helps make that conversation less tricky for guys, encourages someone to check themselves and potentially saves a life".He thanked his family, friends and work colleagues and the "incredible" medical staff he had encountered, especially in cancer co-hosts Capital FM's Breakfast Show and That Peter Crouch previously presented on BBC Radio 1 alongside Scott Mills, leaving the station in 2022 after 10 on Stark's post, his co-hosts Jordan North and Siân Welby shared their love and support for Stark."Unreal bravery from you Chris," Welby wrote. "I've never known anyone handle a situation with such class and determination."Scott Mills commented that it was "so, so amazing" that Stark was sharing his diagnosis, adding: "Always here for you."Testicular cancer is most common in men aged 15 to 49, according to the main symptoms include a lump or swelling in the testicle, an ache or pain in the testicle or scrotum, the testicle getting bigger, or the scrotum feeling heavy.
BBC News
26-02-2025
- Health
- BBC News
Protesters from care sector demand help with new costs
A care provider from Wiltshire has described the financial situation faced by the UK care sector as "really worrying", at a rally in Trowbridge, managing director of Swindon-based First City Nursing, argued recent increases in employer national insurance (NI) contributions, and the resulting wages rises, were compromising the future of social than 3,000 people are believed to have attended the rally to call for NI exemptions for care providers similar to those granted for the Department of Health and Social Care said it had "inherited significant challenges facing social care" but it was "committed" to tackling them. 'Really worried' Speaking to BBC Radio Wiltshire, Mr Trowbridge said the sector was at breaking point."Honestly, I'm really worried. This year, the government has doubled down with the national insurance costs."The councils, and this is the worry, they're all on our side, but they haven't got the money, and they're not putting it into their budgets, because they can't afford to. Social care are on their own with this one."And it's not just our sector, the charities, the hospices, if we're not around come April, which there's a big chance that would be the case . I don't know what's going to happen." Mr Trowbridge was one of 53 marchers who made the journey from Swindon on Tuesday group was marching on behalf of Providers Unite, a national grassroots organisation he says was set up by those across the sector "who had just had enough" of the explained that after years of broken promises to reform the healthcare sector, he felt the group had to march as "no-one's strong enough or brave enough to fix" the in a note of optimism, he noted a number of those taking part "had managed to get meetings with MPs to start talking about the issue". The Department of Health and Social Care said it had to be "honest about the scale of these challenges", adding it was "committed to tackling these head on".It said "the Casey Commission, due to start in April, will publish its first report next year on the first steps towards building a National Care Service."
