Latest news with #ChildandAdolescentMentalHealthService
Yahoo
28-05-2025
- Health
- Yahoo
Families get involved in marking World Ocean Week
An Jersey environmental charity has kicked off its World Ocean Week (WOW) celebrations with a series of events aimed at connecting families with the ocean. Ocean Culture Life (OCL) said its collaboration with the Child and Adolescent Mental Health Service (CAMHS) in Jersey would feature interactive workshops, creative storytelling, and hands-on conservation activities. The events have taken place in Jersey for the past three years, with NASA astronaut Nicole Stott visiting the island in 2024 to talk about protecting the planet's waters. Co-founder of OCL Tamsin Raine said WOW 2025 got under way in St Ouen on Monday with "amazing energy". She said: "We have explored the shore line with the low tide discovery workshop and we have started brainstorming our mural ideas with Art House Jersey. "The kids are totally buzzing, full of questions, ideas and creativity, and that's really what this week is about, connecting people to the ocean in ways that are fun, meaningful and memorable. "I think it's these experiences that plant the seeds of long-term change." Speakers for the 2025 event include Zandile Ndhlovu, a South African ocean conservationist, and British conservation biologist, photographer and filmmaker, Kaush Subramaniam. Other activities being held in Jersey for WOW include a local art exhibition, sensory workshops, a community paddle out, and a display of local marine life. OCL said hundreds of young people would participate in its ocean conservation school workshops as part of the project. The experience ends with the celebration of World Ocean Day on 8 June. Follow BBC Jersey on X and Facebook. Send your story ideas to Astronaut helps schools learn about World Ocean Week Ocean Culture Life
The Courier
02-05-2025
- Health
- The Courier
How a DNA project led to Dundee woman's rare disease diagnosis
When Danielle Alexander took part in a major pioneering DNA project she had no idea it would finally give her the answers she has spent her life looking for. The genetic testing revealed the 36-year-old from Dundee has an exceptionally rare disease. But rather than being upset, Danielle was relieved to eventually learn what was wrong with her. The news came after she had spent years being misdiagnosed with an eating disorder by mental health professionals. 'I had taken part in the project in 2018, but didn't hear anything,' she explains. 'Then in August 2021 I had a video call with my geneticist and when I saw him he looked like he had won the lottery. 'He told me he had contact from researchers who had found a new mutation in a condition called mitochondrial disease. 'I had never heard of this condition. 'He said they had been working on the project to see if they could find anyone who had the faulty gene. 'It turned out they did find someone with two copies of the faulty gene and that person was me. 'I was referred for further testing which confirmed I had a form of mitochondrial disease. 'It came as a shock – but I was also relieved. 'After 33 years I had finally found the answer.' Since her diagnosis, Danielle has been raising awareness about the rare disease to try to prevent other sufferers from being misdiagnosed. Mitochondrial diseases are a group of genetic disorders that disrupt the normal functioning of mitochondria, the energy-producing powerhouses within cells. Mitochondrial are like little battery packs inside every cell in the body converting food into energy. These disorders can affect high-energy parts of the body like the heart, brain and liver. Around one in 5,000 people suffer from the complex condition. There is currently no cure. Danielle was born with a hole in her heart and needed an operation at the age of two to repair it. She also had faltering growth and struggled to put on any weight. 'When I was born I weighed just 4lbs 5oz,' she explains. 'I was affected by Intrauterine Growth Restriction (IUGR) – when a baby in the womb does not grow as expected. 'As a baby I was also very sick – I couldn't keep anything down. 'I ended up back in hospital with a nasal gastric tube which I had intermittently until I was five years old.' Throughout her school years at the former Bracken's Primary in Dundee she continued having difficulties eating. Danielle was often admitted to hospital as a result. Over the years she saw various medical professionals and psychologists to try to get to the root of the problem. Then, when Danielle was 16, her paediatrician – after failing to reach a diagnosis -referred her to the Child and Adolescent Mental Health Service (CAMHS). And CAMHS professionals suspected she might have an eating disorder. 'They thought I had anorexia nervosa so I was sent to an inpatient unit for young people with complex mental health conditions,' she explains. 'I was forced to try and eat food I didn't like which was physically difficult. 'It was also detrimental to my mental health. 'I was there for around eight months.' Over the next few years, she was admitted to a couple of other inpatient eating disorder facilities. She went on to have constant battles with medical and mental health professionals. 'I really felt like I didn't belong in these units. 'It was even confirmed by one specialist psychologist that there was no evidence of any eating disorder. 'Yet I was still admitted to another facility despite this.' At one stage Danielle thought she might have a rare form of dwarfism called Russell-Silver Syndrome (RSS). This was after she watched a television documentary called The Real Life Thumbelina which featured a four-year-old girl. The condition severely affected her growth, mobility and appetite. 'I thought it sounded a lot like me,' Danielle says. Later in 2014 when she requested her medical records she saw it was noted – when she was younger – that she might have Russell-Silver Syndrome. Yet this was never mentioned to her or her mum. She ended up having tests but didn't have two of the genetic changes associated with RSS. However, Danielle did finally manage to get help with her issues around eating. In 2014 she had a PEG tube inserted after finally being diagnosed with gastroparesis by a consultant at Ninewells Hospital. This means she is tube fed nutrients into her stomach overnight. But she still had other issues and no diagnosis for them. These included a severe lack of energy, fatigue, lactic acidosis and ketosis. She also has widespread musculoskeletal pain. But fortunately for Danielle a breakthrough was just around the corner. In her late 20s Danielle came across information on Facebook about the 100,000 Genomes Project. So in 2018 she and her mum both gave samples for the study. The UK Government project was managed by Genomics England. Participants gave consent for their genome data (complete set of DNA in a human cell) to be linked to information about their medical condition. And this data was then shared with researchers. In 2021 Danielle was contacted after scientists discovered a new faulty gene mutation for mitochondrial disease. And when they looked on the 100,000 Genome Project database, Danielle was the only match who had both faulty gene copies. They discovered she has a mitochondrial disorder. 'Finally I had got to the bottom of what was wrong with me. 'The correct diagnosis of mitochondrial disease has enabled me to receive specialist care. 'This includes having cardiac reviews to check for cardiomyopathy which can affect people who have certain types of the condition.' Danielle's mum, Helen Fraser, was there for Danielle throughout her health struggles. And Danielle believes she wouldn't have survived without her support. 'If my mum didn't fight for me I wouldn't be here today. 'She was an amazing advocate for me. She was the most incredible and inspirational mum you could ever wish for.' But Danielle's mum had her own serious health issues to deal with. Pulmonary fibrosis led to her needing a double lung transplant in 2018 and in 2021 she lost her central vision. She ended up passing away from pneumonia in December 2024. It means Danielle is now responsible for the care of her 13-year-old sister, Olivia, and brother Liam, 18. Despite her ongoing struggles, Danielle is passionate about raising awareness of mitochondrial disease. To this end, she is currently in the process of writing a book about her experience. She also supports a charity called My Mito Mission. 'It raises awareness, offers support to those affected by the condition as well as supporting research,' she says. 'I have set up my own Mito Mission in Dundee – with all the money raised going back to the main charity to fund awareness, support and research.' She also shares information on her dedicated Danielle's Mito Mission Group on Facebook and Instagram. 'I want to give hope to others still experiencing a lack of diagnosis. 'There needs to be better awareness of rare, undiagnosed and genetic conditions – especially from health professionals.' She adds: 'I will be forever grateful to those who have played a part in solving my puzzle. 'I hope that one day there will be a cure or treatment.'
BBC News
20-03-2025
- Health
- BBC News
NHS Tayside halts new CAMHS autism and ADHD referrals
NHS Tayside has stopped all new referrals for ADHD and autism to its Child and Adolescent Mental Health Service (CAMHS) due to increased demand for health board said the nationwide issue of a sharp increase in referrals for neurodevelopmental assessment had led to an "extensive" waiting said it must "carefully consider" how it safely prioritised patients to ensure it carried out the primary role of the service, which was to assess and treat children with significant mental health concerns. "This change means that if your child does not have a co-existing mental health problem, we are unable to accept a referral for neurodevelopment assessment," the board added. The new policy does not apply to young people who have already had a letter of acceptance to CAMHS or the neurodevelopmental is unclear whether the halt is permanent or temporary. In a post on its Facebook page, NHS Tayside said: "While a formal assessment and diagnosis can provide a clearer understanding of certain patterns of behaviour, it is important to know that it is not necessary in order to access many forms of support, including additional support within school."We know that navigating concerns about your child's development can feel overwhelming, and we want to ensure you have the right support and guidance." The health board provided links to online resources, including the Neurodevelopmental Parent board added: "We understand that hearing the news about assessments may bring feelings of frustration, worry or uncertainty."However, we would recommend focusing on your child's individual profile - strengths and challenges and gaining an understanding of their individual needs."The Scottish government said in January that there had been a "significant increase in referrals" for autism diagnosis, which was putting pressure on an already-stretched said that people were waiting too long for a diagnosis through the NHS but that it was working to improve Wellbeing Minister Maree Todd told BBC Scotland News at the time: "A combination of factors, including a significant increase in referrals, means that some people are waiting longer than they should for a diagnosis."We invest £1m a year to provide community and support to autistic adults, including the Embrace Autism programme."Formal diagnosis is not required to access the support provided and we know that 78% of autistic adults supported have reported improved wellbeing as a result."
The Independent
12-03-2025
- The Independent
Schoolgirl accused of terror found intervention session ‘triggering'
An autistic schoolgirl who was exploited by a neo-Nazi and charged with terror offences found her first intervention session 'triggering' but there were 'no concerns' she would end her life days before her death, her inquest has heard. Rhianan Rudd, 16, 'could not get enough' of learning about German history before she was radicalised and later investigated by MI5 and charged for downloading a bomb-making manual and saying she wanted to blow up a synagogue, the court was told. The teenager, who had a history of self-harm, was found with a ligature around her neck on May 19 2022 at a children's home in Nottinghamshire, five months after her charges were dropped when it emerged she had been groomed by an American far-right extremist. Chesterfield Coroner's Court was told Rhianan had six sessions between March 4 2022 and her death with an intervention provider working on behalf of Prevent, a deradicalisation programme, who cannot be named and was referred to as Witness X in court. Witness X gave evidence from behind a screen on Wednesday and agreed that Rhianan spoke with an American accent during their first session, which she developed from talking to the neo-Nazi, and said she 'lost her sanity' the day she 'entered the Telegram cesspit'. Counsel to the inquest Edward Pleeth told the court it was recorded that Rhianan was 'shaking' after this session. Mr Pleeth said it was noted that: 'It was triggering for her and brought out a lot of emotions and thoughts she had put away. She said she did not like what was discussed in the session.' The court was told Rhianan did not like talking about terrorism because it was 'PTSD inducing' and she 'locked away her thoughts and feelings about the (criminal) trial'. In their second session, the inquest heard Rhianan said she felt she 'had over-spoken which was triggering' and added: 'I'm not radicalised, I don't give two shits about anything to do with that subject.' In later sessions, Witness X recorded that Rhianan said she was not triggered by the intervention sessions, she 'enjoyed' them, and spoke about her future, the inquest heard. The witness agreed she had 'no concerns' from their final session on May 16, three days before Rhianan's death, that she would end her life. She agreed 'there was nothing from this session that stood out' and 'no dialogue or behaviour (she) considered to be alarming or worrying'. Rhianan had told Witness X she was 'hyper-aware' of far-right extremism and drew a timeline of her radicalisation in one of their sessions, chief coroner Judge Alexia Durran heard. The court was shown a picture of Rhianan's drawing including a German scientist character from the game TF2. In another session, the teenager told Witness X she had a 'three-day schizoid, was rocking back and forth' and when asked what that meant, Rhianan said she was 'fanatic', the inquest heard. The court was told Rhianan had not been receiving Child and Adolescent Mental Health Service (CAMHS) support while completing the Prevent sessions. The inquest was told emails were exchanged between April 19 and 21 raising concerns that Rhianan's mental health had 'deteriorated' because she had been wearing camouflage around the residential home and wanted to visit London to get a visa so she could travel to Texas. Witness X told the inquest: 'I was not aware of her wanting to travel to Texas, I was made aware about her wearing camouflage clothing.' The inquest heard Rhianan told Witness X she had worn her camouflage clothing because all her clothes were in the wash. Rhianan also told the case worker that the last time she had had contact with the American extremist, he told her he 'loved her' and she 'felt a gaping hole and very sad for a long time'. The inquest continues.
Yahoo
12-03-2025
- Yahoo
Schoolgirl accused of terror found intervention session ‘triggering'
An autistic schoolgirl who was exploited by a neo-Nazi and charged with terror offences found her first intervention session 'triggering' but there were 'no concerns' she would end her life days before her death, her inquest has heard. Rhianan Rudd, 16, 'could not get enough' of learning about German history before she was radicalised and later investigated by MI5 and charged for downloading a bomb-making manual and saying she wanted to blow up a synagogue, the court was told. The teenager, who had a history of self-harm, was found with a ligature around her neck on May 19 2022 at a children's home in Nottinghamshire, five months after her charges were dropped when it emerged she had been groomed by an American far-right extremist. Chesterfield Coroner's Court was told Rhianan had six sessions between March 4 2022 and her death with an intervention provider working on behalf of Prevent, a deradicalisation programme, who cannot be named and was referred to as Witness X in court. Witness X gave evidence from behind a screen on Wednesday and agreed that Rhianan spoke with an American accent during their first session, which she developed from talking to the neo-Nazi, and said she 'lost her sanity' the day she 'entered the Telegram cesspit'. Counsel to the inquest Edward Pleeth told the court it was recorded that Rhianan was 'shaking' after this session. Mr Pleeth said it was noted that: 'It was triggering for her and brought out a lot of emotions and thoughts she had put away. She said she did not like what was discussed in the session.' The court was told Rhianan did not like talking about terrorism because it was 'PTSD inducing' and she 'locked away her thoughts and feelings about the (criminal) trial'. In their second session, the inquest heard Rhianan said she felt she 'had over-spoken which was triggering' and added: 'I'm not radicalised, I don't give two shits about anything to do with that subject.' In later sessions, Witness X recorded that Rhianan said she was not triggered by the intervention sessions, she 'enjoyed' them, and spoke about her future, the inquest heard. The witness agreed she had 'no concerns' from their final session on May 16, three days before Rhianan's death, that she would end her life. She agreed 'there was nothing from this session that stood out' and 'no dialogue or behaviour (she) considered to be alarming or worrying'. Rhianan had told Witness X she was 'hyper-aware' of far-right extremism and drew a timeline of her radicalisation in one of their sessions, chief coroner Judge Alexia Durran heard. The court was shown a picture of Rhianan's drawing including a German scientist character from the game TF2. In another session, the teenager told Witness X she had a 'three-day schizoid, was rocking back and forth' and when asked what that meant, Rhianan said she was 'fanatic', the inquest heard. The court was told Rhianan had not been receiving Child and Adolescent Mental Health Service (CAMHS) support while completing the Prevent sessions. The inquest was told emails were exchanged between April 19 and 21 raising concerns that Rhianan's mental health had 'deteriorated' because she had been wearing camouflage around the residential home and wanted to visit London to get a visa so she could travel to Texas. Witness X told the inquest: 'I was not aware of her wanting to travel to Texas, I was made aware about her wearing camouflage clothing.' The inquest heard Rhianan told Witness X she had worn her camouflage clothing because all her clothes were in the wash. Rhianan also told the case worker that the last time she had had contact with the American extremist, he told her he 'loved her' and she 'felt a gaping hole and very sad for a long time'. The inquest continues.
