Young carer who unwittingly breached allowance rules forced to repay £2,000
A young carer who had looked after her disabled mother from the age of eight was forced to repay more than £2,000 when she unwittingly breached carer's allowance benefit earnings rules after joining a government youth employment scheme.
Rose Jones, 22, said she was twice wrongly advised by her jobcentre work coach that her wages earned under the Kickstart scheme would not affect her eligibility for carer's allowance.
Less than a year after she completed the six-month scheme, under which the Department for Work and Pensions (DWP) paid her wages, she received a demand from the DWP demanding she pay back £2,145 of overpaid benefits.
'I was shocked when the letter arrived – it came on my 20th birthday – and I really didn't know what to do. I thought it was a mistake because my work coach had told me it was fine. It was a really scary letter to receive,' Jones said.
The case is the latest in a stream of carer's allowance injustices highlighted by a year- long Guardian investigation and a relatively rare case involving a young carer – most unpaid carers are much older adults.
At least 144,000 UK carers are repaying more than £250m in earnings-related carer's allowance overpayments caused by what MPs said were 'human mistakes' on the part of carers and repeated DWP administrative and policy failures. Thousands of carers have been prosecuted and millions of pounds of public money wasted.
The government last year vowed to reform aspects of carer's allowance after widespread public outrage. It commissioned an independent review of carer's allowance overpayments which is expected to report to ministers in July.
Jones began caring for her mother, who has physical and mental disabilities, at the age of eight, helping around the house and with shopping, looking out for her safety, and accompanying her to hospital appointments.
Being a carer affected her childhood and education, she said: 'I was always quite hesitant to be away from my mum. I'd worry about her all the time when I was at school and struggle to focus. I wouldn't want to go on sleepovers at friends' houses.'
When she turned 16 she started to claim carer's allowance and it was only when she took up a place in 2021 on the DWP's Kickstart scheme aimed at young people at risk of long term unemployment, introduced during Covid in 2020, that it became an issue.
Jones said: 'Before I'd accepted the job [though the Kickstart scheme] I told him [the job coach] I was on carer's allowance and I told him the exact amounts I'd be on and that I'd be working from home so I'd be doing the same amount of caring as always.
'He assured me that he was confident that my carer's allowance would not be affected. I asked him a couple of times, not just one phone call. I checked again after a couple of months once I had started earning my wage, and he reassured me, so I thought at this point everything was fine.'
The demand, when it came, felt massively unjust. 'I'd been told by the work coach it was fine. I'd been a carer for my mum all my teenage years and felt my experiences had just been disregarded.'
Under Kickstart, the DWP paid employers £1,500 a month towards wages and training costs, with participants guaranteed to be paid the equivalent of 25 hours a week at the national minimum wage, in Jones's case £164 a week, or £656 a month.
Jones was taken on as a digital marketing assistant by a local firm and under carer's allowance rules was allowed to earn up to £128 a week on top of her carer duties, equivalent to 19.5 hours at the minimum wage for 18- to 20-year-olds.
Because she had unwittingly breached the weekly earnings limit, carer's allowance rules meant she forfeited her £67.60 carer's allowance. This 'cliff edge' rule meant had she gone even £1 a week over the limit for six months she would have had to repay over £2,000.
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Jones said she was frustrated by different branches of the DWP – the jobcentre, the employment section and the carer's allowance unit – which did not seem to be clear on the rules and had not routinely shared information about her case.
She was also shocked that the DWP had known about the earnings breach but had waited months before alerting her, allowing a debt to accrue that will take her years to repay. 'It's left me with a bit of distrust towards the DWP,' she said.
Emily Holzhausen, the director of policy at Carers UK, said: 'It's devastating to see a young person who has had a more challenging start in life be badly let down by the DWP.
'It's not the first time that hard-pressed carers have been given the wrong information by people working for the DWP; the very people they trust to get the rules about benefits and entitlements right.
'The fact that the DWP's computer systems don't speak to each other have left many unpaid carers with unacceptable overpayments – despite the DWP having information that could have been used to stop them earlier.'
A DWP spokesperson said: 'We understand the huge difference carers make as well as the struggles so many face.
'The carer's allowance overpayment rate is now the lowest on record and we are increasing funding and bringing in more staff to check 100% of alerts to help prevent carers falling into debt.
'But we want to go further, that's why we've launched an independent review of carer's allowance to explore how earnings-related overpayments have happened and what changes can be made.'
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The Sun
2 hours ago
- The Sun
My family is haunted by finding my 9-month-old brother dead in his cot after we put him to sleep the wrong way
I WILL never forget the morning we found my nine-month-old brother Neil dead in his cot. Mum had come to wake me first so we could get the baby up and dressed together. 6 6 I was three and a big girl now, with big sister responsibilities and a grown up-looking bedroom with orange flowery wallpaper - the sort interior designers now call retro. I was already awake, and I held mum's hand as we walked to Neil's room. She let me go in first. I peeked over the top of the cot and said: 'Neil's not there, where is he?' Mum rushed over, pulled the blanket back and her face was frozen. It was so scary. Did I scream or was it her? Someone screamed. And then it becomes a blur. The shockwaves of that morning continue to affect our family, from Beckenham, London, over 40 years later. It was February 1973, and cot deaths, as they were then referred to, were something that happened to other people, spoken about in hushed tones, and, let's be honest, often viewed with an element of suspicion. It was also a time when the best-selling book on babies, which had pride of place on my parent's bookshelf, told mums and dads to put tots to sleep on their stomachs and wrap them up warmly. In 2025, thank goodness, there is far more awareness of sudden infant death syndrome (SIDS) - the sudden and unexpected death of a baby where no cause is found - which killed my brother. We now know the safest way is on their backs and a cool environment, with no danger of overheating, but SIDS still affects around 200 families every year in the UK, and the emotional toll of the losses remains as difficult as ever. Beautiful' baby boy dies after mum fell asleep cuddling him into her when he woke up crying in the night After Neil died, my mum Carol and dad Ian became advocates for the Foundation for the Study of Infant Deaths, which is now The Lullaby Trust. Dad, a journalist, wrote a heart-wrenching story for the local newspaper, which described that terrible morning. I even stayed up 'late' with nan and grandpa to watch him speak about it on the BBC TV show Nationwide, and there were numerous bake sales at local fetes to raise funds. When my brother Andrew came along in 1974, I think it was this very newspaper that published an article with a photo of our family alongside an article about how it's possible to exist after losing a child. We looked happy - but the problem was, we were falling apart. We'd had no proper support, no room to grieve, and we still had so many questions about how and why Neil was gone. This came to something of a halt when dad's job took us to live in Paris. A line of some sort was drawn, except, of course, it wasn't. We were left with the black silent hole of his absence. There was nothing that could fill the ghastliness of my son not crying CarolNeil's mum Mum threw herself into Paris life. She had learnt French as a teenager and had already lived there in the 60s, working as a bilingual secretary for the Ariane space project. But she had changed. I knew it, and I could feel it more and more as I grew older. Dad's job, now foreign correspondent, took the family to different places - Brussels, Jerusalem, Bonn. Mum played the part of the supportive other half, but she had lost her mojo. She'd had all sorts of ambitions - teacher training college, a master's degree, the job for Arianne - but she never really went back to work. Over time, she stopped being sporty, when she used to play tennis, hockey and swim a lot, and she put on weight. There was drinking, perhaps not that unusual in an expat journalist house in the 70s and 80s, but still, it was different. Don't get me wrong, Andrew and I had a marvellous childhood, full of love, fun holidays, travel, fascinating people, and lively chats. But as we got older, we could feel the tension growing between mum and dad. 6 6 One day, there was yet another stressful exchange between our parents, with mum flouncing off to bed. This time, Dad, teary-eyed, said: 'She has never been the same since Neil died.' I was stunned. I had never heard him say Neil's name before. I must have been about 18. I'd grown up used to saying: 'Oh yes, I had a brother who died of cot death,' without really connecting the words with my memory of that morning or my understanding of what it must have done to my parents. After that, I did ask a few more questions. My aunt sent me that first article dad had written; my uncle agreed that mum was never the same since Neil's sudden death. Then, in 2000, Dad died, aged just 59, of cancer. He missed meeting his first grandchild, my daughter, Izzy, by four months. What is sudden infant death syndrome (SIDS)? Sudden infant death syndrome (SIDS) is the sudden and unexpected death of a baby under the age of 12 months where no cause is found. Around 89 per cent of deaths happen when the tot is under six months old. It is relatively rare, with 182 babies dying from SIDS in the UK in 2021. While doctors don't know exactly what triggers it, there are ways to significantly reduce the chances of SIDS occurring: Put your baby on their back for all sleeps - day and night Share a room with your baby for the first six months Place your baby on their own, clear, flat sleep surface (e.g. cot or Moses basket) Keep your baby smoke-free during pregnancy and after birth Never sleep on a sofa or armchair Do not co-sleep if you or anyone in the bed has been drinking alcohol, smoking, or taking drugs or medication that makes you drowsy These things are especially important for babies who were born prematurely or of a low birth weight, as they are typically at higher risk of SIDS. Source: The Lullaby Trust Again, this was all played out in public, with dad writing his final article days before he left us. He described his feelings, the ones he wouldn't talk to us about, to the readers of The Times newspaper. In that article, he wrote: 'My pregnant daughter has a little lump inside her kicking and fighting for life. 'I have a little lump in me which is kicking and fighting for my life and it will win.' He must have been thinking about Neil, but, again, we did not talk about it. Dad's death catapulted mum into a deep despair. More drink, angry moods, strange behaviour, until eventually, she moved to a home in Deal, Kent, where she left us in February 2025. Did my mum resent me because I survived? In her last years, mum had started talking about Neil, but our relationship was so strained by then, I didn't have the courage to ask her more. Did she resent me because I survived? Was she worried that Andrew might feel he was here because Neil wasn't? Did she blame dad for the media coverage? So many questions. In the end, I asked none. Who could ever get over the death of a child? I can't imagine anything happening to my amazing three children, Alfie, Maddie and Izzy, or to my brilliant niece and nephew, currently living, as fate would have it, in Paris. My family's experience could have turned me into an anxious mother. But by the time Izzy arrived, there was so much good advice on how to keep babies safe when they are sleeping, I was able to build a bedtime and sleep routine quickly, and with confidence. It's thanks to The Lullaby Trust, the charity that mum and dad were such great advocates for in its early days. We were pleased to reconnect with them when mum died to make them the beneficiaries of all donations for her. It was at mum's funeral that I met her friend from the local writer's club. She asked me if I had read mum's story, written as part of their '17 minutes series', where members were given 17 minutes to write something down. 6 You have heard my story, now here is my mum's. Carol Anne Murray, mum of three, survived by two, written in 17 minutes, 45 years after losing her son, Neil. We talked together, Ian and I. We spoke about everything under the sun, except for the one great hole that was in our lives. How could it have happened? We had a beautiful daughter, chatty and bubbly. We now had a son. How wonderfully lucky, we thought, one of each. How neat. But then, one morning, I went to his cot to get him up and there was no response. The unbelievable had happened. Why? How? I screamed. Ian came upstairs. He was silent. It was then that I knew he had already gone into the bedroom and found what I had found. He had gone downstairs in disbelief. We called an ambulance, of course. We hoped desperately that something could be done. But what could they do? They just swaddled him and took him away. We were left with the black silent hole of his absence. Later that day the doctor told us that it was certainly a case of SIDS. It now had a name. But that was all. There was nothing that could fill the ghastliness of his not crying. Neil had cried a lot. I wondered if his crying had been a warning. Had he known all along he would die? But there was no going back, his absence was so obvious. Our daughter's tears said it all. We would never be able to see him again. One day, as we walked home from nursery, we passed by a dead pigeon. 'Hmmmm,' she commented. 'He's just like Neil Bruce John, he won't move again either.' Her philosophical analysis became an acceptance. We went on to have another son a year later. Forty years later I still feel it, just as if it had happened yesterday. I have never forgotten Neil Bruce John. The ABCs of safer sleep EXPERT help is freely available from The Lullaby Trust, which exists to keep babies safe by offering advice, and support grieving families. By investing more than £12million in research, the charity has overseen the reduction of sudden infant death syndrome (SIDS) by 80 per cent, saving 30,000 babies since 1991. It wants all families to know the ABCs of safer sleep: A lways sleep your baby on their b ack, in a c lear cot or sleep space. Following these rules, day and night, will help reduce the risk of SIDS. If you are grieving, you can find support on The Lullaby Trust website, by calling the bereavement helpline on 0808 802 6868, or emailing support@ 6
The Guardian
2 hours ago
- The Guardian
‘I feel like a drug dealer': the parents using black-market melatonin to help their children sleep
The first time I gave him a gummy, I thought, 'Oh my God, have I killed him?' He just passed out in front of the TV. That never happens.' Jen is remembering giving her son, David, six, melatonin to help him sleep. She got them from a friend, a paediatrician who gave them to her own child. 'It was sort of hilarious. She had half a tub of gummies, and her husband met my husband in a car park near a roundabout to hand them over, like some underhand black-market deal.' Her tone is light, but in fact she and her husband were becoming increasingly desperate for sleep. 'They were like gold dust.' By meeting in the car park to exchange the gummies, the husbands weren't breaking the law, exactly, but they were stepping into a legal grey area. Melatonin is a synthetic version of the sleep hormone that occurs naturally in our bodies, rising at night in response to darkness and helping us get to sleep. It isn't strictly illegal in the UK, but it is a prescription-only medication, and it can only be prescribed to children by a paediatrician under a specific set of circumstances, usually for children with a diagnosis of autism or ADHD. The rationale for this pathway is so that the paediatric specialist can rule out any potentially physical causes or underlying disease relating to the sleep disorder. Side-effects can include drowsiness the next day, nausea and feeling dizzy. In other European countries melatonin is far more accessible, often sold in pharmacies, although the guidelines for use in children are the same (both there and in the UK, it is licensed only for children with autism and ADHD). In the US, meanwhile, where it is far less regulated, you can buy it in supermarkets, even from Amazon, and it is often specifically targeted at children. Some gummies come in the shape of teddy bears, or are marketed using cartoon characters. There, it is routinely given to neurotypical children: nearly one in five US children under 14 are now consuming melatonin. In light of more restricted access in the UK, British parents are increasingly looking to the internet to purchase gummies, often with little medical oversight or supervision. David never slept, Jen tells me. Even as a newborn he was unusually alert. Where other babies ate and slept, he ate and was awake, and never settled easily. 'In the early days you're in good company,' she says, of the sleep deprivation. But, as time went on, she began to feel increasingly isolated. 'People kept saying it will improve when he starts nursery, when he starts preschool. It never did. We just never had an evening. We'd be putting him to bed, sometimes, at 11 o'clock or midnight.' David was also having massive meltdowns. Despite trying a calm bedtime routine, nothing seemed to be working, and it was taking a toll on the entire family. Jen was so exhausted she was forced to stop working completely. As David grew, his parents started to suspect neurodivergence. He could count to 20 at 18 months, and was doing 30-piece jigsaw puzzles. An educational psychologist has recently confirmed that he is gifted to the extent that it will affect his life significantly, and he has been on the waiting list for an autism assessment for two years. When he was five, he was taken to see a paediatric consultant in the European country they were living in at the time. 'I think my pineal gland's broken,' David told the doctor, much to everyone's astonishment. He was prescribed melatonin, and their lives changed for the better overnight. Had they been living in the UK at the time, they would almost certainly still be waiting. 'Although people think of melatonin as a vitamin nowadays, it's not. It's actually a hormone that's released by the pineal gland in the brain, and it does lots,' says Prof Paul Gringras, a sleep and neurodisability consultant at Evelina London children's hospital, and president of the International Paediatric Sleep Association. 'The pineal gland connects with all different parts of the body and helps synchronise all the cells in the body to keep our body clock going. Although every cell in the body has its own little clock, they're not synchronised and they need to be held together. Melatonin is one of the main messengers.' David's description of his pineal gland as 'broken' was rather astute, then. Certain populations of children, such as those with autism and ADHD, simply sleep far worse than typically developing children – Gringras tells me the rates are 70-80% of children with those diagnoses. My brother, who is autistic, mostly non‑verbal with very high support needs, was one such child. 'It was soul-destroying,' my mum, Anna, remembers. 'Just mind-bendingly exhausting.' Thanks to melatonin, prescribed by the paediatrician, she could get four hours of sleep a night. 'He didn't sleep for more than two or three hours at a time. What the melatonin did was keep him asleep for at least four hours and I could cope, just about, if I got four and a half hours.' I have seen first-hand the impact that sleeplessness can have on a family, and how neurodivergence and sleep issues are often intertwined. 'Some children with autism lack a gene that helps convert a chemical in the body called tryptophan into melatonin. So if you measure melatonin levels in the urine, they're actually producing less melatonin,' says Gringras. As for ADHD, those children do produce some melatonin, 'but instead of it being the hormone of darkness, produced in the early evenings, they're not producing it till way later, until two in the morning'. These families need help. If their child's sleep is being managed by professionals, their parents are less likely to get divorced, lose their jobs, crash the car or have an accident. That's not to say, however, that all these children must be medicated. Gringras is keen to emphasise that behavioural sleep programmes can be transformative, even in the most severe cases. In one sleep trial he ran, 50% of the severely autistic children who were signed up didn't need to take part in the medicated bit, because the behavioural strategies had been so successful. When he does prescribe melatonin, parents still need to keep the behavioural approach going so that they have learned new habits for when the melatonin stops working. 'Even on the labelling of these medicines, it says: for children who have failed an appropriate behavioural intervention,' he points out. What concerns him, and other professionals I speak to, is the idea of melatonin as a sticking plaster. 'Many of the [paediatric] community are on their knees. They have massive waiting lists. They don't have psychologists. And this is one of my really big worries, that it kind of becomes a quick fix. No one thinks it's better than the behavioural approach, but they just haven't got time to do that. And it's faster to write a prescription, but it's not correct.' That is, of course, if you are even able to get hold of a prescription. Most of the parents I spoke to didn't have one. They were buying melatonin on the internet, or while abroad. All of them felt conflicted, uneasy, even scared of the consequences. Some were waiting for a diagnosis, while others suspected neurodivergence but hadn't gone down that path yet. All of them only spoke on condition of anonymity, and every single one of them was totally desperate for a good night's sleep. 'It makes me feel like a drug dealer. It's getting harder and harder to buy them.' I'm speaking to Charlotte, who, like Jen, has spent much of her child's life enduring 'endless evenings', which she describes as 'unbearable'. Her daughter, Edie, now 10, couldn't settle. 'She'd lie in bed moving around a lot, jerking her body. She just couldn't sleep.' As a family, they tried everything. 'We'd do bath time and lavender oil and reading a story and talking, and then we'd try leaving her on her own. Nothing worked. We'd just have to lie with her for hours.' They wondered quite early on if Edie had ADHD, but didn't pursue diagnosis. 'She's really brilliant and wonderful, but she was quite volatile, and really quite hyperactive.' They first started giving her melatonin when she was eight, when Charlotte's sister-in-law, a doctor whose disabled daughter takes melatonin, gave her some to try. Charlotte was astonished – not only did Edie go to sleep at 8pm, but the effect on her behaviour and mood was transformative. She started buying it online. Charlotte thinks that Edie's volatility is directly linked to her sleep. A model student at school who struggled with peer relationships, she would mask, or hold it together, until she got home where she could become aggressive towards her parents and siblings. At times her mental health difficulties have been extreme. 'She was getting more and more anxious and having very, very dark dreams and getting very upset,' says Charlotte. 'She started banging her head against the wall till it bled. And then she started banging her sister's head against the wall till it bled.' Things escalated. On one occasion Edie got on the roof and threatened to jump, saying she wanted to die. 'The fact that she couldn't sleep was a massive contributor to her feeling super stressed and highly sensitive,' says Charlotte. 'When we started giving her melatonin it got a lot better. Then last year I ran out of melatonin. I couldn't buy it.' It was like a switch flicked inside Edie's brain. 'She tried to run in front of a speeding lorry because she said everyone hated her. And then she started holding knives to her neck. She didn't want to go to school. And I didn't know what to do.' Charlotte ran to the doctor's surgery with her child in her arms. 'We went to see a counsellor, and we borrowed some money to get her assessed. And it came back as not ADHD, but autism,' she says. She also had an emergency mental health appointment, but all they could offer a suicidal autistic child who struggles with groups was, astonishingly, group therapy nine months later. 'Then they said, 'How is her sleep?' And I said, 'Well …', and the woman said to me, 'If you are about to tell me that you give your child unprescribed melatonin, I will have to report you to social services and they will take action.' And I was like, fuck. And it was really stressful.' Gringras is shocked when I tell him about the safeguarding threat made to Edie's mum. It is true that safeguarding is very important, and buying medication on the internet comes with risks. In the US, there has been a spike in child hospitalisations – poison control centres there saw a 530% spike in reports of melatonin ingestion in children between 2012 and 2021 – and seven reported deaths since 2015, including a child as young as two months. Gringras points out that the lack of US regulation means there often isn't dosage consistency across even a single jar of gummies. A study last year found that some contained an alarming 50mg of melatonin – 0.5-1mg is the recommended starting paediatric dose. Linking these deaths directly to melatonin is a challenge because you can't exclude underlying health conditions or whether other medications played a part. Nevertheless, it is concerning. 'I don't think it's fair to come down hard on a parent if they're not getting the support they need, and they're just doing something out of desperation. I think the real question is: why haven't we been able to support the parent with behavioural advice? Why haven't we been able to see the child and reassure them, maybe, hopefully, they don't have something physically wrong? And why are we going to make them wait three years for a diagnosis?' All the parents I spoke to expressed unease, guilt and even fear at their decision to give their children melatonin bought online or abroad. Jen told me she was worried about being arrested, and, though the school Senco is aware the family uses it, she would hesitate to mention it to a GP. Even parents who were giving melatonin under some degree of medical supervision, usually from a family member who works as a doctor, felt anxious. I spoke to doctors who give their own children melatonin bought online but wouldn't go on the record for fear of professional consequences. Although Edie now has an autism diagnosis, and Charlotte is finding it increasingly hard to get melatonin on the internet, the threat of a social services referral means she is now frightened to talk to a paediatrician about getting it prescribed officially. 'The other day we had a hospital appointment. We were asked, does she take any medication? And I said no. And Edie looked at me and I just shook my head.' But it's not only parents of neurodivergent children who are turning to melatonin. I spoke to a number of mothers who have given it to their neurotypical children. One, Isobel, says she has only used it a couple of times when taking an overnight flight, having obtained it from an American relative. 'The first time, my daughter was four, and my youngest was nearly two. As they were one-offs, and as it's sold for use by kids in the US, I wasn't worried about the side‑effects and felt it was safe in that quantity.' Emily has been giving melatonin to her children – eight and four – for longer. She gave it to her eldest when she started year 1 and began struggling to get to sleep – sometimes she was awake until 11pm, and teachers had started raising concerns about how tired she was. 'We'd have to drag her out of bed and she'd be exhausted. It was really distressing,' Emily said. At her wits' end, and worried that her daughter was falling behind at school, she ordered some melatonin online. She did a lot of research, choosing a brand used by a paediatrician quoted in an article in the New York Times, and says she kept an eye out for side-effects such as sleepwalking or drowsiness the next day. The effect, Emily says, was 'life-changing'. 'It freaked me out a little bit. I was like, oh my God, what have I done? What have I given to her? Why has this happened? But she fell asleep after 20 minutes and it felt very natural. She had a few stories. She just got naturally drowsy. She fell asleep. Then the next morning, she woke at a normal time, bright and ready for school.' After that, Emily gave her a gummy every night for eight or nine months, but says she no longer needs it. 'I was really worried they'd get addicted to it, but it's almost like the melatonin helped them form a new habit [of going to sleep at a decent time].' She now gives it to her youngest child, who at four-and-a-half developed similar issues, and it has had the same effect on bedtime. She has recommended it to a few parents she knows from school and some are also giving it to their children. 'One friend, her partner died when her kid was very little, in a really awful, traumatic way. I think that kid was basically suffering from PTSD, would get really emotional at night and wouldn't go to sleep. She came to me going, 'Oh my God, I'm just having the worst time and I'm not getting any sleep and she's not getting sleep …' I was like, 'Hey, it's up to you whether or not you take this advice, but I would recommend this.'' Whether a child is neurodivergent or not, with the right insight and support, behavioural changes can be transformative for families, Kerry Davies, a sleep practitioner and founder of private sleep support service the Sleep Fixer, tells me. She has many years of experience, including working for the charity Scope as part of a joint NHS and local authority funding initiative within children's services, with the goal of reducing melatonin prescription costs by supporting children to sleep without it. 'I look at the whole picture: where the child's at, where the parents are at. I do a phased, step-by-step guide based on what that family need,' she says. 'How consistent is their morning wake-up time? Because this can often be a difficulty with children who perhaps sleep in late during the weekends but are woken up early during the week, which can confuse the body clock. I'll ask what time are they actually falling asleep, and manage parental expectations around what might be appropriate.' She mentions some parents putting their children to bed far too early as an example. 'Then we look at how much physical activity they're getting during the day. Physical activity really helps to be able to fall asleep and maintain sleep. What's their bedroom environment like? Is it consistent through the night? Do they struggle with noise? Do they struggle with silence?' Having such tailored support from a sleep practitioner can radically improve a family's mental and physical health, but accessing it remains a problem. 'It is a postcode lottery as to whether there's a service or a sleep practitioner that you're able to access,' Davies says. 'The parents of neurodivergent children may have been failed a lot in their journey.' Davies says there should be behavioural support services in every country, regardless of where a child lives, and that with that in place she would feel comfortable if GPs were able to prescribe melatonin. She says: 'If I could wave a magic wand, there would be behavioural support that coincides with melatonin, attempting to taper off while continuing that behaviour support so you have those long-term solutions.' Ultimately, this is about crumbling services, and desperate parents and children being left chronically sleep deprived without any support. Can they be blamed, then, for being at crisis point and trying to find a solution? Were they to be given the help they need, they might not need the melatonin at all. And, by giving it without official medical oversight, how can the children be supported to taper off? Gringras – who as part of a melatonin taskforce has contributed to a guide for caregivers – says we know 'hardly anything' about the long-term effects of melatonin use. 'For children with autism, the best we've got is two years follow-up data, really. So we know over a two-year period it's safe, but if you said to me, well, do we know it's safe over a five-year period? The answer is no, we don't. We hope it is. And whenever we prescribe a medicine, we're never naive. It's always a balance of benefits against harm. But if it's a child who's got significant learning problems, who's tearing the house up and whose parents can't cope, then that tips your balance.' Gringras agrees with the rationale that melatonin should only be prescribed by a specialist. It's the wait for a diagnosis that is creating the biggest barrier. 'I think we've made the diagnosis slightly too involved and time-consuming,' he says. 'We spend less time managing it and too much time diagnosing it. I'll be so unpopular with that [viewpoint].' He says sleep problems in early childhood should be a warning sign for developmental paediatricians who are assessing children with possible neurodivergence. Where he is convinced a child is autistic or has ADHD, due to it being very apparent, or there being a strong family history, he will sometimes prescribe the medicine off-label (legally prescribing a medicine for a different use from the one it is licensed for). It was concerns over the long-term effects – including claims that melatonin can interfere with or even delay puberty (something a 2020 study found no evidence of) – that stopped one mother I speak to from continuing to administer it to her daughter. Like every parent I spoke to, Helen was spending hours each night trying to help her daughter calm down enough to sleep. It was affecting her mental health, and, one evening, out of sheer desperation, she gave her some melatonin in her drink. It worked instantly, and Helen carried on using it for a while, but, she says: 'It didn't sit comfortably with me. I didn't want to be in a situation where I had to use melatonin to get her to sleep, and I didn't feel comfortable using it long-term. I don't really want to give my child something I don't know is completely safe to take.' Charlotte understands this viewpoint, and shares much of the same feelings. Things had reached a point with Edie, however, where she could simply see no alternative. 'I think it saved her life, ultimately, and saved our marriage and saved our family.' Some names have been changed. The Republic of Parenthood by Rhiannon Lucy Cosslett is published by September on 7 August (£18.99). To support the Guardian, order your copy at Delivery charges may apply.
The Independent
3 hours ago
- The Independent
Thousands of NHS patients ‘to be denied breakthrough Alzheimer's drugs'
Breakthrough drugs that slow the progression of Alzheimer's disease will reportedly be refused for use on the NHS this week in a blow to thousands of patients. The two drugs, Lecanemab and donanemab, slow down the decline in Alzheimer's patients' ability to carry out daily activities. The drugs' success in halting the progression of Alzheimer's was heralded as a 'new era' by campaigners and researchers. However, the National Institute for Health and Care Excellence (Nice) is expected to refuse to recommend them on the NHS, according to The Sunday Times. The regulator has already issued two decisions, one in October last year and another in March, saying they would not recommend the drugs for use on the NHS. A final decision will be published on Thursday. Both drugs already have UK drug licences, making them available privately. It is estimated that around 70,000 adults in England would have been eligible for treatment if the drugs had been approved. The regulator will reportedly turn down both drugs on the grounds of cost-effectiveness, with one insider telling The Sunday Times: 'It is the end of the road for these drugs on the NHS'. Lecanemab removes build-ups of the protein beta-amyloid from the brain. Trials showed that lecanemab can slow the progression of Alzheimer's by 27 per cent over 18 months if given to someone early on in the course of their decline. Donanemab, marketed as Kisunla in the UK, teaches the body's immune cells to recognise and remove the amyloid protein, which builds up in the brains of people with Alzheimer's disease. The protein build-ups are thought to be toxic to brain cells, leading to the symptoms of Alzheimer's, the Alzheimer's society has said. Lecanemab can, however, cause swelling and bleeding in the brain. In trials for Donanemab, a third of recipients experienced abnormalities in their brain scans caused by brain swelling and bleeding, NICE said. The drugs reportedly cost around £20,000 to £25,000, with the NHS being offered a lower price. Privately, the treatment costs between £60,000-80,000 per year, according to Alzheimer's Research UK. In a previous review by NICE in October 2024, director of medicines evaluation Helen Knight said: 'Donanemab could slow down cognitive decline by 4-7 months, but this is just not enough benefit to justify the additional cost to the NHS. The cost-effectiveness estimate for donanemab is five to six times above what NICE normally considers an acceptable use of NHS resources'. While the regulator said the decision would be disappointing for some, 'there are other treatments being developed'. Hilary Evans-Newton, chief executive of Alzheimer's Research UK, said the decision to turn down the drugs would be 'deeply disappointing'. She added: 'These treatments are not perfect, and we recognise the challenges they pose around cost, delivery and safety. But scientific progress is incremental, and these drugs represent a vital foundation to build on.' The regulator NICE is due to publish the final draft guidance about the two drugs on Thursday. This leaves space for the decision to be challenged and sent to a review panel before the final guidance is published.
