Schoolchildren will be taught the value of grit, ministers vow
Children will be taught the value of 'grit' in schools to tackle a growing mental health crisis, it has emerged.
Bridget Phillipson, the education secretary, and Wes Streeting, the health secretary, said that children needed to be prepared for life's 'ups and downs' in the classroom.
The education secretary is pushing to improve attendance rates as figures show that 150,000 pupils are absent more than half of the time.
Figures released last week by the Department for Education showed that deteriorating mental health levels are driving record school absences.
The Labour government is to introduce a drive to 'tackle anxiety and low mood' in the classroom and will create 'attendance and behaviour hubs' they wrote.
Writing in The Daily Telegraph, Phillipson and Streeting said: 'By
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The Sun
32 minutes ago
- The Sun
Our brave Jasper is slowly losing the ability to walk – a drug could change that but the NHS cruelly won't fund it
THE family of a 10-year-old boy who's losing the ability to walk have described the 'nightmare' battle they face with the NHS to access a free drug for help. Rosie and Pete Day from Horsham, West Sussex have been fighting for the drug givinostat for their son Jasper who has Duchenne muscular dystrophy (DMD). 4 4 Duchenne is a genetic muscle wasting condition that causes progressive muscle weakness. In the UK, an estimated 2,500 people are living with the condition The Day family have twins Jasper and Arabella, and two older daughters. Both Jasper and his twin sister Arabella have Duchenne, with Arabella a carrier and Jasper the most affected - as the condition mostly affects boys. Givinostat, developed by ITF Pharma UK, can slow progress of Duchenne - keeping children on their feet for longer - and is being offered for free by a drug firm while it goes through the process of NHS approval. Only some NHS trusts across the UK, and few in England, are giving out the drug despite it being part of an early access programme since November. Families are now facing a "cruel" postcode lottery over who gets the medicine and are in a race against time, according to the charity Duchenne UK. Some NHS trusts are refusing to supply the drug while others delay it by drawing up lists of who they think should get it first. NHS trusts say they need to pay for monitoring the drug - around £1,900 per year per patient - out of their own budget. Rosie said: "We try and live in the moment and, in this moment, there's an opportunity to make a massive change to Jasper. Toddler, 3, left fighting for life after 'going off his food' - as killer cocktail of common viruses attacked his heart "We're not going to cure it, but this drug gives him the best chance of having the early life that he wants to have and what every parent wants to give their child. "It's so close - and yet we're stuck. "We're stuck in this process where there's something in reaching distance that could make a huge difference to keep him walking, keep him active, keep him with his siblings in the garden, keep him walking up the stairs, all of those things, and it just feels that we can't quite get there. "We're on the finishing line to get something that will make a difference and we can't quite get there because of the system we're in. "The drug is not going to cure it, but it will give him the childhood you would wish to give your child - to keep them playing football, coming on dog walks, being able to walk up the stairs, playing the French horn, all of those things that you dream your child is going to get to do.' She added: "It feels like a nightmare, because you know that the doctors want to give it, but when it comes to getting the drug in his mouth and seeing what it would do, we're stuck. "It's a lottery, basically, depending on where you are in the country ... and within NHS trusts themselves." 'When will I get the drug, mummy?' Jasper is under the care of the Evelina London Children's Hospital, which is only now starting to contact patients and is drawing up a priority list for who gets the drug first. "Every day that passes by is a day that we can see Jasper decline and see him struggling with his muscles," Mrs Day said. "Two weeks ago, he asked me, 'When will I get the drug, mummy?' "We're stuck in a situation over who's going to make those decisions regarding who gets the drug - of whether Jasper gets it or another boy. "For every boy it's heartbreaking, because someone ultimately is not going to get the drug at that moment based on the current criteria." She continued: "If Jasper stops walking, we're not going to get that back. We're stuck in a situation over who's going to make those decisions regarding who gets the drug - of whether Jasper gets it or another boy Rosie Day "Every day matters. Six months ago, Jasper could walk up and down the stairs easily. He can't do that now and Pete has to push him up the stairs every night. "Yet we can't give him something that is as simple as two spoons full of medicine and a blood test, and a little bit of maybe resource looking at the blood test results - that is what is standing in our way." Rosie said it was unclear how the Evelina is "going to make a fair choice" because knowing who will lose mobility is not an exact science. And she said the process is "hugely subjective" because there is no linear decline in the condition and the decisions made by NHS trusts could end up being "completely wrong". According to Duchene UK, boys whose condition is getting worse risk falling off the list entirely while waiting for the drug. Around 500 boys in the UK are eligible for givinostat, which can be taken at home like Calpol, with hospitals then doing follow-up blood tests of around eight in the first year, followed by twice a year thereafter. 4 Children may also need an ECG, though these are already part of routine Duchenne monitoring. Emily Reuben and Alex Johnson, founders of Duchenne UK, said: "As time ticks by, more boys are losing out on their chance to access givinostat. "This is a simple treatment, which can be easily managed at home, and requires uncomplicated blood tests to monitor. It's free to the NHS and could offer real hope for patients and their families. "The delays are cruel and the postcode lottery is unjustifiable. We are calling on the NHS to urgently make this available to both ambulant (walking) and non-ambulant boys." To date, all health boards in Scotland are rolling out the drug, alongside those in Swansea and Cardiff. Leicester Royal Infirmary was the first trust in England to give the drug, but the Evelina has not yet, and neither have trusts in Manchester, Liverpool and Newcastle. Great Ormond Street Hospital is working to supply the drug. A spokesman for the Evelina said: "We have begun contacting families of all existing Evelina London patients who may be eligible for givinostat and are working to set up appointments in the next few months. "Our clinical team are working through our patient lists and are currently prioritising children who need the treatment most urgently, or are at a higher risk of losing movement (ambulation) soon." An NHS spokesman said: "The first National Institute for Health and Care Excellence (Nice) committee meeting to consider this treatment is scheduled to be held in July 2025, and if manufacturer ITF Pharma can offer a cost-effective price to enable Nice to recommend its use, the NHS will be ready to work with the company to explore fast-tracking access for patients. "NHS England has published guidance on manufacturer-led early access schemes, which require trusts to cover substantial costs and find additional clinical resources to administer new treatments, and we understand a number of trusts across the country are preparing to offer givinostat via such a scheme." Parents have met with Health Secretary Wes Streeting to try and speed up access. Duchenne muscular dystrophy (DMD) Muscular dystrophies (MD) are a group of inherited genetic conditions that gradually cause the muscles to weaken, leading to an increasing level of disability. Duchenne MD (DMD) is one of the most common and severe forms, it usually affects boys in early childhood; people with the condition will usually only live into their 20s or 30s. The condition primarily affects boys because it's an X-linked recessive condition. This means the faulty gene responsible for DMD is located on the X chromosome, and boys have only one X chromosome. Early symptoms often involve delays in walking, difficulty getting up, and enlarged calves. Over time, as the disease progresses, it can impact various parts of the body, including the heart and lungs. Treatment focuses on managing symptoms and slowing the progression of the disease, as there is no cure. Corticosteroids are a mainstay of treatment, and new gene therapies are also available for certain patients. Givinostat (trade name Duvyzat) is a treatment for DMD that has been approved for use in boys aged six and older, regardless of the specific genetic mutation they have. It's a non-steroidal drug that works by inhibiting histone deacetylase (HDAC), which helps to reduce inflammation, muscle loss, and scarring. While not a cure, givinostat can potentially slow down the progression of DMD and preserve muscle function.
The Guardian
40 minutes ago
- The Guardian
‘Transformative': the UK lab working on a way to halt genetic type of dementia
Behind the gleaming glass facade of an office block in east London's docklands, Dr Martina Esposito Soccoio is pipetting ribonucleic acid into test tubes. Here, not far from Canary Wharf's multinational banks, a British university spinout is working on a breakthrough treatment for a form of dementia suffered by millions of people worldwide. There is no cure for dementia at present, but scientists at AviadoBio hope their clinical studies can stop the progression of a particular genetic type of frontotemporal dementia (FTD). 'It may be one of the first dementias to have a definitive treatment, a cure if you like, a really transformative treatment that allows people to live much longer and much more normal lives,' says Prof James Rowe, consultant neurologist at Cambridge's Addenbrooke's Hospital. FTD mainly affects the front and sides of the brain and unlike Alzheimer's disease, does not begin with memory loss, which tends to occur later. It is characterised by progressive loss of language and changes in personality and behaviour. Most cases are diagnosed in people aged 45 to 65, but it can affect people in their 20s and 30s. There are an estimated 20,000 to 40,000 people living with FTD in the UK, and between 1m and 2m in the world. Rowe says: 'It's a double-edged sword: the young onset, the high genetic burden and rapid illness are also features that perhaps make it more tractable to treat.' The Die Hard and Pulp Fiction actor Bruce Willis, who recently celebrated his 70th birthday, was diagnosed with FTD two years ago, with his family calling it a 'cruel disease'. They have not said whether he has a genetic form of FTD. The gene therapy developed by AviadoBio, which was spun out of Prof Christopher Shaw's research lab at King's College London in 2021, targets a type of FTD known as FTD-GRN. This is caused by mutations of a gene that lead to a deficiency of progranulin (GRN), a protein that is essential for maintaining healthy brain cells. AviadoBio, which employs 60 people, signed an exclusive licence agreement with the Japanese pharma firm Astellas last October to develop the therapy. It is now recruiting patients for its clinical trial in the UK, as well as the US, Poland, Spain, Sweden and the Netherlands. The first patient received the infusion in Warsaw in March 2024, out of six patients who have had the treatment so far, in Poland and the US. All patients will be followed for up to five years as part of the trial. AviadoBio expects to publish the first data next year. Three years ago, Jessica Crawford, from Beverley in Yorkshire, lost her mother to FTD, caused by mutations of another gene, C9orf72. In 2014, when her mother was 58, her behaviour changed; the family suspected depression. Previously very sociable, she stopped going out and started playing games like Candy Crush or watching TV shows 'over and over,' her daughter recounts. Her mother initially did not want to see a doctor, and was only diagnosed with FTD in February 2019. By this time she was so confused she once put raw chicken in a sandwich. 'Getting the diagnosis wasn't easy because FTD wasn't well known; my mum was aceing in the memory tests,' Crawford says. But her mother became increasingly confused and lost the ability to speak, and to communicate at all. Crawford became her full-time carer in 2020, until her mother deteriorated so much that she had to go to a care home in late 2021, and died the following year. Crawford, 33, found out that she herself carries the gene mutation, and with her husband decided to conceive through IVF with a pre-implantation genetic diagnosis. When their five embryos were screened, four had the gene mutation, and the fifth resulted in the birth of their son. The couple donated their other four embryos to science and she takes part in GENFI – a long-running UK-led global study of families with FTD across 40 sites. AviadoBio itself was born out of the research done at King's by Shaw, a neurologist who has focused on FTD and amyotrophic lateral sclerosis (ALS) for more than three decades, and Dr Youn Bok Lee and Dr Do Young Lee from the UK Dementia Research Institute's centre based at King's. ALS, the most common form of motor neurone disease, has also been linked to mutations of the GRN gene and leads to muscle weakness, paralysis and eventually death. Sign up to Business Today Get set for the working day – we'll point you to all the business news and analysis you need every morning after newsletter promotion Shaw acts as the company's chief scientific and clinical adviser, and while the Lees are no longer involved in the firm's research, all three remain shareholders. David Cooper, AviadoBio's chief medical officer, says: 'It was something that hit me when I first joined the company, you look at the MRI scans of patients with a GRN mutation, the frontal and temporal parts of their brain are just melting away … So we really need earlier treatment, an, earlier diagnosis and a more organised healthcare approach to deal with it.' AviadoBio's lead product, known as AVB-101, is infused directly into the brain by a neurosurgeon using a cannula as thin as a strand of angel hair pasta, during a 90-minute procedure guided by MRI. It delivers a functional copy of the progranulin gene to restore appropriate levels of the protein to affected areas of the brain. It is a once-only treatment, and no immunosuppressant drugs are needed subsequently. 'The patients who have FTD are born with almost half of the progranulin levels that you and I might have,' says chief executive Lisa Deschamps. 'Our goal in the study is to supplement the GRN gene and restore as much progranulin in these individuals as possible to normal levels to reduce the neurodegeneration effect. Other medications in development at AviadoBio include two gene therapies, from Philadelphia-based Passage Bio and Eli Lilly-owned Prevail Therapeutics, but they do not target the thalamus, the 'relay station' in the brain. Passage Bio's therapies are delivered directly to the cerebrospinal fluid in a single treatment. Denmark's Vesper Bio has developed an oral capsule, designed to act on the GRN gene, that is being trialled at University College London Hospital. AviadoBio, whose investors include Johnson & Johnson's innovation arm and the UK not-for-profit LifeArc Ventures, is part of a growing life science cluster in Canary Wharf. At its labs, scientists – assisted by robotics – research how to target a particular gene. 'The UK has real strengths in this area,' says Rowe, pointing to the international GENFI study, run since 2011 by Prof Jonathan Rohrer, a neurologist from UCL Queen Square Institute of Neurology who also sits on AviadoBio's scientific advisory board. 'It's a real win for the UK.'
The Independent
an hour ago
- The Independent
Top doctor says weight loss jabs could become as common as statins
Professor Sir Stephen Powis suggests weight-loss jabs like Mounjaro could become as common as statins, potentially available in pharmacies, to combat rising obesity rates. The NHS is preparing to roll out Mounjaro (tirzepatide) in GP practices, with plans to broaden access through pharmacies and digital services. Professor Chris Whitty warns that weight-loss jabs are not a 'get out of jail card' and shouldn't replace public health measures or justify advertising unhealthy foods to children. An estimated 1.5 million people in the UK are currently taking weight loss jabs, with around 220,000 expected to benefit from the NHS rollout over the next three years. Professor Powis acknowledges potential side effects and the need for proper checks when prescribing these drugs, while also noting that obesity costs the NHS approximately £11.4 billion annually.
