
Report finds Guernsey medicinal cannabis is used recreationally
Concerns have been raised by health professionals about the recreational use of medicinal cannabis in Guernsey. The Combined Substance Use Strategy 2024 annual report found 79% of those who used cannabis in the last 12 months reported that they did not have it prescribed to them. For those who did not have it prescribed to them, 70% reported using medicinal grade cannabis.Substance abuse lead at the Health Improvement Commission, Andrea Nightingale said: "The medicinal cannabis is strong and the strength of it is a concern - especially when young people are using as their brains are still developing.
"We know that the mental health services are extremely concerned about the correlation between mental health and medicinal cannabis and induced psychosis which has risen over the last couple of years, although now it is fairly stable." The strategy combines tobacco, alcohol and drugs into a single document that is being continuously developed. Guernsey's director of public health, Dr Nicola Brink, said: "As evidence about the recreational use of medicinal cannabis emerges, we started looking at it and our chief pharmacist is looking at it in more detail. "From our perspective, the strategy should never be a static document - it needs to be a living document. "So we have modified the strategy during its lifetime as new evidence and trends emerge."
'More data needed'
Local addiction support charity, Independence, said its data sets were too small to build an accurate picture but it was aware of anecdotal evidence that people were diverting medication. Executive officer of the charity, Tracey Rear, said: "For any services or any change to happen we need to have solid data."
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The Independent
15 minutes ago
- The Independent
Parents whose sons are losing ability to walk face ‘nightmare' battle with NHS
Parents whose sons are losing the ability to walk have described the 'nightmare' battle they face with the NHS to access a free drug. The medicine givinostat can slow progress of Duchenne muscular dystrophy – 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. However, only some NHS trusts across the UK, and few in England, are giving 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. In desperation, parents have met with Health Secretary Wes Streeting to try and speed up access. According to the Government, it is up to individual NHS trusts to decide whether to provide the drug. Duchenne UK is supporting families in their fight for givinostat, including Rosie and Pete Day, an investment manager, and their 10-year-old son Jasper, from Horsham, West Sussex. The Day family have twins Jasper and Arabella, aged 10, and two older daughters. Both Jasper and Arabella have Duchenne, with Arabella a carrier of the genetic disorder and Jasper the most affected, as the condition mostly affects boys. The drug, developed by ITF Pharma UK, is only being given under the early access programme to children who are still able to walk. Mrs Day told the PA news agency: 'We try and live in the moment and, in this moment, there's an opportunity to make a massive change to Jasper. '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. 'We can't give it because it we're stuck, even though it's free and it's there – we can't give it. '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.' 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 added: 'If Jasper stops walking, we're not going to get that back. '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.' Mrs Day 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. Mr Day 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. 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.'


TTG
an hour ago
- TTG
'It's comfortable and cosy': why working from bed is key to this agent's success
A travel agency owner has called for more compassion for homeworkers, arguing that she manages her company more efficiently from her house – and indeed her bed – than she ever could from an office. Paula Hansen runs World Accessible Holidays, which specialises in travel for disabled clients, entirely from her home in Wales. Like many agents, she believes a remote model enables her to maintain a healthier work-life balance and be overall more productive. But for Hansen, homeworking isn't just a perk – it's a necessity. The mother-of-one lives with fibromyalgia, a chronic disorder that causes pain in muscles and soft tissues all over the body. Other symptoms include fatigue, brain fog and sleep disturbances, all of which can significantly affect the individual's ability to work – and makes working from an office almost impossible. In 2023, 136,000 claimants of PIP (Personal Independence Payment) listed fibromyalgia as their main disabling condition. Many people in employment may also require additional sick leave and/or reduced hours, due to the severe and often volatile nature of their symptoms. But Hansen is determined not to let her fibromyalgia limit her potential as a business woman. Three years on from her diagnosis, she has developed a sturdy kit of tools for maintaining her productivity – including working from bed. 'Why shouldn't you work from bed?' Hansen tells TTG Luxury. 'It's comfortable and cosy, and you're probably working more effectively because you're relaxed.' The self-proclaimed 'bedpreneur' says that working from bed is also preferable to a desk, which tends to flare up her symptoms: 'All of the pain from my fibromyalgia is from the hips upwards, so my back will hurt if I'm sitting on a chair for too long.' Hansen's work hours are also atypical, beginning at around 10am and ending at nearly midnight. 'My pain levels are highest in the morning, so I'll do some hours after 10am, and then if I'm tired, I'll go and have a sleep, and then resume work when I wake up,' she explains. 'So it is more like a nine to 11 schedule, with lots of sleep breaks in between.' She also uses meditation and ice packs, along with painkillers when necessary, to further alleviate her symptoms. 'Why shouldn't you work from bed? It's comfortable and cosy' As well as helping her to manage pain more effectively, working from home has also been hugely beneficial for Hansen's concentration. Without the usual office disruptions, she says she can focus for longer and thus, complete tasks faster. This lack of distractions can be especially valuable for people with fibromyalgia, 80% of whom will experience issues with memory and attention. While Hansen's condition has undoubtedly made work more challenging, it has also instilled in her a great deal of empathy for her clients. The Cardiff native knows all too well the obstacles of travelling with mobility issues; as well as causing extreme tiredness, her fibromyalgia prevents her from sitting in one position for extended periods of time, which makes driving and flying particularly difficult. Hansen also has a teenage son with cerebral palsy, a neurological condition that causes muscle weakness and impaired mobility. While Evan can walk short distances, he requires a wheelchair and is unable to travel without assistance. Flying can be especially 'nightmarish', says Hansen, due to the lack of consideration from other passengers boarding the plane. It's this first-hand experience of disability that has given her the determination to continue advocating for disabled travellers – even when she's in severe pain. Hansen arranges all types of trips for her clients, from city breaks and beach holidays to safaris and honeymoons. To achieve this, she partners with specialist suppliers who can provide medical equipment, adapted transport and accessible accommodation. The disability of her customers varies, but each one has a dream of travelling without barriers. For many, it's their first holiday after a serious illness or accident. The additional requirements create extra work for Hansen, but having witnessed the life-changing power of travel for individuals with disabilities, she says 'it's all worthwhile'. 'When you have a client tell you they've gotten into the sea for the first time because you've recommended a hotel with a sea track, that is much better than just someone saying, 'I've had a great holiday,'' she explains. 'It's so rewarding.'


Daily Mail
3 hours ago
- Daily Mail
To Exist as I am by Grace Spence Green: Don't ignore me - and don't pity me, either
To Exist as I am: A Doctor's Notes on Recovery and Radical Acceptance by Grace Spence Green (Wellcome £16.99, 244pp) On October 17, 2018 Grace Spence Green, 22, a fourth-year medical student, was walking through the atrium of Westfield Shopping Centre in east London towards the tube station when a stranger jumped head first from the top-floor balcony and landed on her neck. The fact that she happened to be walking past at that moment meant Grace broke the man's fall and thus saved his life. But his fall broke her spinal cord. She was paralysed for life, from the chest down. The two would never exchange words. She doesn't even mention the man's name in this powerful and excoriating memoir. On the night of the accident, he happened to be in the bay beside hers in A&E, just for one night. Much later, she discovered he was a migrant who'd been high on weed. He was sentenced to four years in jail for grievous bodily harm, released after serving two, and then deported. She doesn't feel bitterness towards 'The Man', as she calls him, or even any emotional connection. All of her anger, and there's a great deal of it, is directed towards us, the general public, for getting things so wrong in what we say to disabled people, and how we treat them. Prepare to be severely chastened – and re-educated. Grace says she doesn't desire our insatiable curiosity, or our pity, yet she invokes both, strongly, in her visceral account of the aftermath of that fateful day. The week in a high-dependency unit 'in a warm, fuzzy, opioid dream'; the 26 metal staples put down the middle of her back by the surgeon Dr Bull; the eeriness of the 'bloodless injury', which nonetheless wrecked her body; the ominous words spoken by the doctors three months later, at the official prognosis and diagnosis meeting: 'It would be good to see things changing over the next few weeks.' But things did not change. Sensation did not come back to her legs or toes. Up to then, part of her still believed that the operation would 'fix' her, and make everything go back to how it was before. Now, 'my seemingly impenetrable bubble of denial had burst'. It would take eight months for the fact that the injury was permanent, and that she would never walk again, to sink fully into her brain. At the Royal National Orthopaedic Rehabilitation Centre in Stanmore, north-west London, Grace was relieved as well as shocked to meet other young people in a similar plight. There was competitiveness among some of the patients. 'Are you walking yet?' she was asked. 'Not yet,' she'd reply. She recalls the bleakness of returning to the Centre after a few days at home over Christmas with her loving family and her steadfast boyfriend Nathan, to whom she would later become engaged. She thought back to the weekend before the accident: she and her friends had sat up all night round a bonfire in a Kentish field, chatting and laughing. 'Now I find I have lost control of every bodily function, in a place I cannot leave.' She was told she'd need to insert a single-use catheter into herself every four hours for the rest of her life. She felt 'waves of hatred' towards the wheelchair at first – until she learned to appreciate it as a tool, just as spectacles are a tool. She now can't stand the expression 'wheelchair-bound'. She bristles when people use the word 'inspirational' to describe her progress – she calls it 'inspiration porn', as if people get some kick from her 'tragic' story. 'I've heard the word so many times that it's lost all meaning.' But it's hard not to see her as an inspiration. She completed her medical studies, became a junior doctor in 2021 and now makes it her business to protect the dignity and autonomy of her patients, in a way that sometimes did not happen to her. She notices that as soon as she takes off her lanyard and stethoscope at the end of the working day, she becomes 'hyper-visible and utterly ignored'. That's the daily status of too many disabled people. She does not like her wheelchair to be pushed or pulled 'in the name of helping'. It undermines her autonomy. She also hates it when people hold the door open for her: 'It can be much easier for me to do it myself, rather than having to duck under an outstretched arm.' We should say to a disabled person, 'You let me know if you need help.' Questions and remarks that annoyed her while she was in hospital were: 'Is there anything that can be done?'; 'Are you getting better?'; and 'It's not permanent, I hope?' So, don't say those. But also, whatever you do, don't say to a disabled person that you don't see them as disabled. ' 'You're not looking at me properly,' I want to say. 'You are missing a huge part of me by trying to ignore this." ' And on no account must you say you pity her. 'When people do that, it feels as if they have forced their way into my world and spat on it.' Nor must you single a disabled person out for notice, even out of kindness. Once, back at medical school, an instructor was on the phone cross that a lesson was starting late. 'And we have a lady in a WHEELCHAIR waiting in the corridor, so it's just unacceptable.' Grace felt 'shaken, to be singled out in a crowd of peers.' Later, the instructor said, 'Sorry – I'm really sorry, I didn't mean to be offensive, I'm sorry, it was just a stressful situation.' Grace didn't 'interrupt her ramble'. She just looked directly into her eye and said, 'OK'. 'Micro-aggression upon microaggression, piling up,' Grace calls all this. For her, it's an uphill battle to defend her happiness, when the assumption is that she's the 'poor brave tragic girl', whose boyfriend was 'a hero' not to desert her. Every October 17, she celebrates her 'alive day'. The fact that her wheelchair is full of scratches and dents is a sign of a life lived to the full. 'I am going to enjoy a life that society has told me is not worthy. That is activism.'