Many people with Huntington’s disease are being turned away from traditional mental health support, a charity has claimed as it called for more to be done to help people with the condition. Some mental health services have told patients that they do not have the specialist care needed, leading to the Huntington’s Disease Association calling for better help and support for people living with the disease. Huntington’s disease is a condition that stops parts of the brain working properly over time and can lead to problems with movement, cognition (perception, awareness, thinking, judgment) and mental health. Most people with the inherited condition will start to show symptoms between the ages of 30 and 50 and it gradually gets worse for around 10 to 25 years until the person dies. During all this time, my mental health was worsening. I’d seen my uncle commit suicide a few years before after his diagnosis and him not receiving the correct support and I was at a similar point Daniel Johnston There is no cure for Huntington’s disease or any way to stop it getting worse. A small new poll of 105 people with the condition, shared with the PA news agency, found that 85% had attempted to access community mental health services. But among this group, 56% claimed they had been denied access to care, the Huntington’s Disease Association said. Daniel Johnston, from Horam, East Sussex, said his local mental health service “didn’t know” where to refer him. The 41-year-old father of two said: “When I tested positive for Huntington’s, there was no specific pathway from that point for any mental health support. “I was confused, upset and angry about the diagnosis. I didn’t, and still don’t, fully understand my feelings of confusion and anger. “I wasn’t referred to a professional psychologist or anyone who knows how to support someone with a life-changing diagnosis such as Huntington’s. “During all this time, my mental health was worsening. I’d seen my uncle commit suicide a few years before after his diagnosis and him not receiving the correct support and I was at a similar point. “It was only when I explained to my consultant in our six-monthly appointment earlier this year the extent of my thoughts that he contacted the crisis team for me, and they began a course of daily calls for two weeks. “From this point onwards it’s been getting better, but I feel so sad for others who slip through the net so easily. “It’s as if people get afraid when you mention Huntington’s and there’s confusion around treating Huntington’s and treating mental health. “I’m not surprised by the amount of people being denied access to mental health support services due to having Huntington’s – I have been one of those people and it’s really scary.” The charity said hurdles often occur for patients after they have been referred by their GP for mental health support. Local mental health teams have told patients that Huntington’s “doesn’t fall under the remit of what they’re able to provide treatment for”. The charity has launched a new campaign, Mindful of Huntington’s, to raise awareness of the cognitive impairment symptoms of the disease, and has called for greater access to mental health support. Cath Stanley, chief executive of the Huntington’s Disease Association, said: “Many people think of Huntington’s as a disease which impacts movement, but that is only half the story, and the non-physical symptoms are often overlooked. “At the Huntington’s Disease Association, we find people will most commonly be referred to mental health services due to cognitive symptoms such as irritability and aggression. “Throughout May, we will be focusing on these cognitive symptoms and the life-changing impact they can have. “The stark findings we’re announcing can’t be ignored – people are asking for much-needed mental health support, being turned away, and their health is deteriorating further. It is disappointing but not surprising to see that there’s still a lot of misunderstanding around Huntington’s.” To find out more visit: www.hda.org.uk Read More Charity boss speaks out over ‘traumatic’ encounter with royal aide Ukraine war’s heaviest fight rages in east - follow live Scottish first minister Yousaf calls cost of coronation ‘uncomfortable’ King Charles and other royals return to work after coronation Prince Harry’s ghostwriter opens up about harassment after ‘Spare’

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So you’re planning to go to Glastonbury, but childcare is expensive and you’re wondering if it could be fun to do it as a family. This isn’t something to take lightly however, so what do you need to know before setting off to the festival, kids in tow? First and foremost, children’s tickets are free if kids are aged 12 and under, and there are two family camping fields at Worthy Farm – so bringing them along is feasible if you already have your adult tickets sorted. But, with weather, camping and crowds of the general public to contend with, there is a lot to consider. Here are some parents who’ve done it, and their tips for making it amazing… 1. Sort buggies and bikes Eden Simpson lives near Glastonbury and is excited to head back with her three children this year – who are 12, six and two. In her extensive experience, how you transport kids around the festival is the most important thing. “One of my favourite festivals was 2017 when my now six-year-old was four months old – he was as content as could be in his carrier and I have such fond memories,” says Simpson. “Obviously this is dependent on age, but a decent baby or toddler carrier is great for keeping little ones safe, close and comfortable. If you’d instead prefer to take a buggy, then make sure it’s suitable for off-roading, with decent wheels. Mountain buggies or bicycle trailers are the go-to and we’ve taken the same converted bicycle trailer for several years now. “Add an air horn to ensure people know to move out of the way. Throw in some blankets and fairy lights and voilà, the perfect cosy haven for kids to travel and chill as they get sleepy of an evening by the Pyramid Stage.” 2. Protect their ears Children’s ears are very sensitive and it’s important to protect their hearing from festival noise. “Ear defenders are a must for obvious reasons, so don’t forget to pack them,” says Simpson. 3. Prepare for rain or shine “Be prepared for all weather – the sun can be just as bad as the rain, so bring waterproofs, rain covers, sunscreen and sun shades,” says Simpson of the unpredictable British weather. “I find a couple of cheap shower curtains can be super-handy to use as an extra layer when keeping dry and clean if you’re sitting on the floor, or for covering bags from the rain and dirt.” 4. Tire the kids out early on “Head up to the Kidzfield first thing in the morning and wear the kids out before the music starts in the afternoon, then hopefully you’ll stand a chance of watching what you want, whilst they have a snooze or play with something they’ve crafted there earlier in the day,” says Simpson. 5. Head to the family-friendly camping fields “Opt for family camping. We would make sure we set up shop in Cockmill Meadow or near the Wicket Ground for family-friendly camping,” Simpson says. “We also found Kidney Mead to be a nice family-friendly spot. Even though it’s not a specific family field, it’s centrally located and has easy access to the Pyramid Stage and the Kidzfield. Plus as it’s up the hill, it doesn’t flood,” she explains. When it comes to ensuring youngsters get enough sleep, Martin Wells, 47, dad to 11-year-old Poppy, says: “If they will use an eye mask or ear plugs, use them.” 6. Pack easy-to-spot bright clothes Simpson says: “Make sure your kids are dressed vibrantly and stand out. Not only because it’s Glastonbury Festival so it’s a must, but also because it makes it easier to spot them if they try and wander off.” 7. Don’t over-plan Ashley Thorne, who has been to the iconic festival 15 times – including with his two-year-old, Evan, says: “We decided not to plan to see any bands, we just went with the flow and allowed our little one to decide when he wanted to eat and sleep – it just stopped the stress of having to be at a certain stage at a certain time,” he explains. “Don’t get bogged down with times and eating or sleeping patterns – he was just coming up to two years old, so sitting down and watching the thousands of people walk past him was a game in itself.” 8. Be aware of adult themes Drinking, drugs, nudity and all manner of other not-so-PG things go on at a festival, and you may be worried about your kids encountering some of that. “They’re going to see or smell something,” says Wells. “Try and avoid the obvious areas – Arcadia and the Dance Village [now called Silver Hayes] – but people could be doing balloons at any point, so be aware.” And if they do happen to catch glimpse of something, what’s Wells advice? “I’d just say don’t make a big thing about it. Sure, it’s going to happen and you’re going to see it, but don’t make a big deal out of it. I’m not saying you need to normalise it, but the worse thing you can do is try and hide from it – that won’t happen.” Read More Charity boss speaks out over ‘traumatic’ encounter with royal aide Ukraine war’s heaviest fight rages in east - follow live David Beckham designs new car collection with Maserati The dos and don’ts of looking after your garden in a heatwave Why are we all sleeping so badly at the moment?

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