Latest news with #HayleyClarke
BBC News
16-05-2025
- Health
- BBC News
Swindon girl with Batten Disease will continue to get vital drug
A family has been told their child will continue to get access to a drug which she began taking as part of a trial, and is helping to keep her Addy Clarke, from Swindon, has Batten Disease - a rare degenerative disease that has no agreement has been reached that existing patients will continue to have the drug Brineura, which costs £500,000 per patient per year, via the it has not been recommended for future patients "due to its high price and the limited evidence of long-term effectiveness", said the National Institute for Health and Care Excellence (NICE). Addy's mother Hayley Clarke said she is "absolutely thrilled and relieved and so thankful" at the news but wants to get access to the drug for other children. "There's still another half a fight to go to get it secured for all children, future children most importantly," she said the family could have lost Addy by now, that she should be blind, but her eyesight has been preserved and she can still make herself of the main symptoms of Batten Disease is childhood dementia. "We're just so thankful for the time that this drug is giving us with her," said Hayley, who also told the BBC about her daughter's passions for lions and swimming."I think I'm still processing that it's a yes for our daughter," she added."[I'm] almost trying to be really guarded with hope because we've had too much shattered hope along the way."Hayley said the family has had a lot of support from people around them as well as local hospice charities and the council. The family went with other with members with Batten Disease to Westminster to ask for continued access to guidance from NICE did not recommend using it for future patients due to cost and long-term effectiveness, but said it had reached a deal with the NHS and manufacturer BioMarin for those already using it and anyone signed up by the end of 2025. Helen Knight, director of medicines evaluation at NICE said: "We know this is not entirely the news people in the Batten Disease community were hoping for. However, this is not the end of the story. We will continue to work with all parties towards a solution."The charity Batten Disease Family Association said it was pleased with the agreement, but said as the NICE guidance is a draft and not final, it will continue to push to make Brineura accessible to all children who need it.
Daily Mail
22-04-2025
- Daily Mail
Nurse, 37, is struck off for stalking victim using fitness app Strava - after reducing him to a 'quivering wreck'
A nurse has been struck off for stalking a man using the fitness app Strava, reducing him to a 'quivering wreck'. Hayley Clarke, 37, of Hereford, Herefordshire, started bombarding her victim with messages on various social media platforms - and later the cycling and running tracker app - in June 2022. The man became a 'quivering wreck' after the nurse repeatedly broke court orders not to contact him, a disciplinary tribunal heard. She stalked him 'in the context of a relationship' - and has been sent to prison four times for this, most recently in October 2024. She is currently serving her ten-month sentence on licence. As well as sending the 'repeated unwanted and abusive messages', she threatened to kill herself and damaged his property. She breached a stalking protection order by sending plants to his house from Amazon, posting him a birthday card under a false name and contacting him pretending to be an old friend, suggesting she was watching him and monitoring his home. It left him 'scared to look at his telephone', the court heard: 'He jumps out of his skin when his phone rings; he has to keep his curtains closed because it has caused paranoia.' The nurse has now been struck off at a Nursing and Midwifery Council tribunal, with an 18-month interim suspension order in place in case she appeals. She had been working as a nurse for just six months at the time of her first conviction. Clarke first stalked the man between June 2022 and January 2023, the disciplinary hearing heard. She threatened the victim, referred to only as Person 1, by saying she would 'tell the husband of a friend of Person 1 that he, Person 1, was having a sexual relationship with his wife'. She also sent 'repeated unwanted and abusive messages via Facebook Messenger, Instagram and e-mail', threatened to kill herself and damaged his property. It saw a Stalking Protection Order (SPO) put in place in March 2023. She had been a practising nurse for just six months at this time, having previously worked as a healthcare assistant for six years. But she breached the order in April 2023, sending plants to the man's house using Amazon. She also contacted him using a fake Twitter account and the Strava app. Clarke pleaded guilty to these offences at Kidderminster Magistrates Court in Worcestershire in the same month, and was sentenced to eight months in prison, suspended for 20 months. A Restraining Order was also put in place for two years, forbidding her from contacting the victim. She also had an activity requirement attached to her suspended sentence, to further her rehabilitation and reduce the prospect of her reoffending. But within just eight days of being sentenced, Clarke contacted the victim again. This time, she pretended to be an old friend, suggesting she was watching him and monitoring his home. She was convicted for stalking and breaching an order in July 2023 and sentenced to eight months in prison in August of that year. Addressing Ms Clarke, the committee said: 'In a police interview for these matters, the conduct was denied by you and blame placed on others. 'The denial continued when interviewed by a Probation Officer, when you sought to deny responsibility. 'This position was only changed when you appeared at the Crown Court for sentencing. 'The Judge states within the sentencing remarks that he considered the breaches of your SPO to be "extremely serious" and considered that he would be failing in his public duty if he did not impose a prison sentence and did not believe you were immediately ready to rehabilitate your conduct. 'The Judge described the impact on Person 1 as having been "scared to look at his telephone"; he jumps out of his skin when his phone rings; he has to keep his curtains closed because it has caused paranoia. 'It has, as he puts it, "made him a quivering wreck" [and] "upset his sleep pattern".' A couple of months later, in November 2023, Clarke contacted the man again, and sent him a birthday card under a false name. This saw her sentenced to ten months in prison in January 2024 - but she then committed further offences over the next five months by trying to communicate with the victim, including by email. She was sentenced to ten months in prison in October 2024, as the judge noted she was not ready for rehabilitation. They also pointed out at the time that Clarke stalked the victim while he was having to 'suffer a tragedy of his father dying, so that it accentuated the upset he felt'. Addressing Clarke, the NMC panel said: 'You said you know you made him feel scared and vulnerable, you said because you are not allowed to contact him you can never apologise to him for your actions. 'You said you feel ashamed of your actions and they are not who you are. You said you do not know why you acted in this way.' It added that Clarke said she hoped to gain back trust by being 'the best version of [herself]', and that she believes she has learned from her mistakes. She did not admit to most of the conduct which led to her convictions - which were variously for stalking, breaching a restraining order and breaching stalking prevention orders. The committee said: 'The panel found that although patients were not harmed by your conduct leading to your convictions, a member of the public (Person 1) has been caused emotional harm as a result of your conduct. 'This repeated conduct had breached the fundamental tenets of the nursing profession and therefore brought its reputation into disrepute.' The panel said that it seemed like Clarke had 'deep seated attitudinal problems'.
