Latest news with #LeDeR
Western Telegraph
12 hours ago
- Health
- Western Telegraph
Parents of autistic teenager who died hail ‘milestone' NHS training guidance
A report in 2020 found 18-year-old Oliver McGowan's death four years earlier was 'potentially avoidable'. He died at Southmead Hospital in Bristol in November 2016, after being given the anti-psychotic Olanzapine and contracting neuroleptic malignant syndrome (NMS) – a rare side effect of the drug. An independent review later found that the fit and healthy teenager's death was 'potentially avoidable' and his parents Paula and Tom McGowan said their son died 'as a result of the combined ignorance and arrogance of doctors' who treated him. The learning disability mortality review (LeDeR) into the death concluded there had been a 'general lack of understanding and acknowledgement of Oliver's autism and how Oliver presented himself when in seizure' and that there had been a 'body of written evidence – alongside verbal requests from Oliver and Oliver's family – not to prescribe' Olanzapine. After the Olanzapine was administered, Oliver's temperature rose and he showed signs of NMS. The medication was stopped on October 28 and a CT scan two days later showed Oliver had sustained a serious brain injury. He died on November 11. His parents have campaigned since his death for improvements in the system, and on Thursday the Government published new guidance it said will ensure safer, more personalised care for people with a learning disability and autistic people. The teenager, from Emerson's Green, Bristol, had contracted meningitis twice during childhood and lived with epilepsy, learning difficulties and autism as a result. The Government said the Oliver McGowan Code of Practice on statutory learning disability and autism training aims to ensure staff have the right skills in providing care and better understanding of the needs of autistic people and those with learning disabilities. The guidelines for health and care providers to train staff set out the standards expected from care providers to be compliant with the law and help make sure patients are kept safe. Oliver McGowan's death in 2016 was 'potentially avoidable', a review found (PA) Mr and Mrs McGowan said they hope the guidelines will bring 'meaningful change' and have a 'lasting impact'. They said: 'The publication of the code of practice marks a deeply emotional and significant milestone for us and will ensure Oliver's legacy will continue to make a difference by safeguarding people with a learning disability and autistic individuals from the same preventable failings that he tragically endured. 'The code establishes a comprehensive legal framework for the delivery of the training, promoting consistency and a deeper understanding across health and social care services. 'We are profoundly grateful to cross-party politicians for their unwavering support and especially to Baroness Sheila Hollins, whose leadership has been pivotal in advancing this important work. 'Our heartfelt thanks extend to everyone within the NHS and social care sectors, to our expert trainers, and to individuals with a learning disability and/or autism, along with their families and carers. 'This is a true example of what meaningful change looks like, giving a voice to those who are not always seen or heard, creating a lasting impact that will continue to transform lives for the better.' Paying tribute to the McGowans, care minister Stephen Kinnock said they had been behind an 'incredible campaign to improve the care of people with a learning disability and autistic people after the tragic death of their son, Oliver.' He added: 'Through their work, they have shown admirable dedication, commitment and passion – Oliver's memory and legacy lives through them. 'This government recognises the appalling health inequalities faced by people with a learning disability and autistic people. 'Everyone deserves to receive high-quality, empathetic and dignified care but this cannot be achieved if staff do not have the right training. The Oliver McGowan Code of Practice published today will be a boost for anyone with a learning disability or autistic people, their families and loved ones.' The Government said training will be backed by funding as part of the Learning and Development Support Scheme for adult social care this autumn. Tom Cahill, national director for Learning Disability and Autism at NHS England said: 'We know that often the quality of care and support for people with a learning disability and autistic people has not been good enough and we are determined to make this better. 'This code of practice – a result of Paula and Tom McGowan's tireless dedication – will mean all NHS staff have the training and support they need to reduce inequalities and give people with a learning disability or autistic people the care they deserve.'
Yahoo
12 hours ago
- Health
- Yahoo
Parents of autistic teenager who died hail ‘milestone' NHS training guidance
The parents of an autistic teenager who died after being prescribed medication against his and his parents' wishes have hailed as a 'significant milestone' the publication of guidance they hope will safeguard others. A report in 2020 found 18-year-old Oliver McGowan's death four years earlier was 'potentially avoidable'. He died at Southmead Hospital in Bristol in November 2016, after being given the anti-psychotic Olanzapine and contracting neuroleptic malignant syndrome (NMS) – a rare side effect of the drug. An independent review later found that the fit and healthy teenager's death was 'potentially avoidable' and his parents Paula and Tom McGowan said their son died 'as a result of the combined ignorance and arrogance of doctors' who treated him. The learning disability mortality review (LeDeR) into the death concluded there had been a 'general lack of understanding and acknowledgement of Oliver's autism and how Oliver presented himself when in seizure' and that there had been a 'body of written evidence – alongside verbal requests from Oliver and Oliver's family – not to prescribe' Olanzapine. After the Olanzapine was administered, Oliver's temperature rose and he showed signs of NMS. The medication was stopped on October 28 and a CT scan two days later showed Oliver had sustained a serious brain injury. He died on November 11. His parents have campaigned since his death for improvements in the system, and on Thursday the Government published new guidance it said will ensure safer, more personalised care for people with a learning disability and autistic people. The teenager, from Emerson's Green, Bristol, had contracted meningitis twice during childhood and lived with epilepsy, learning difficulties and autism as a result. The Government said the Oliver McGowan Code of Practice on statutory learning disability and autism training aims to ensure staff have the right skills in providing care and better understanding of the needs of autistic people and those with learning disabilities. The guidelines for health and care providers to train staff set out the standards expected from care providers to be compliant with the law and help make sure patients are kept safe. Mr and Mrs McGowan said they hope the guidelines will bring 'meaningful change' and have a 'lasting impact'. They said: 'The publication of the code of practice marks a deeply emotional and significant milestone for us and will ensure Oliver's legacy will continue to make a difference by safeguarding people with a learning disability and autistic individuals from the same preventable failings that he tragically endured. 'The code establishes a comprehensive legal framework for the delivery of the training, promoting consistency and a deeper understanding across health and social care services. 'We are profoundly grateful to cross-party politicians for their unwavering support and especially to Baroness Sheila Hollins, whose leadership has been pivotal in advancing this important work. 'Our heartfelt thanks extend to everyone within the NHS and social care sectors, to our expert trainers, and to individuals with a learning disability and/or autism, along with their families and carers. 'This is a true example of what meaningful change looks like, giving a voice to those who are not always seen or heard, creating a lasting impact that will continue to transform lives for the better.' Paying tribute to the McGowans, care minister Stephen Kinnock said they had been behind an 'incredible campaign to improve the care of people with a learning disability and autistic people after the tragic death of their son, Oliver.' He added: 'Through their work, they have shown admirable dedication, commitment and passion – Oliver's memory and legacy lives through them. 'This government recognises the appalling health inequalities faced by people with a learning disability and autistic people. 'Everyone deserves to receive high-quality, empathetic and dignified care but this cannot be achieved if staff do not have the right training. The Oliver McGowan Code of Practice published today will be a boost for anyone with a learning disability or autistic people, their families and loved ones.' The Government said training will be backed by funding as part of the Learning and Development Support Scheme for adult social care this autumn. Tom Cahill, national director for Learning Disability and Autism at NHS England said: 'We know that often the quality of care and support for people with a learning disability and autistic people has not been good enough and we are determined to make this better. 'This code of practice – a result of Paula and Tom McGowan's tireless dedication – will mean all NHS staff have the training and support they need to reduce inequalities and give people with a learning disability or autistic people the care they deserve.'
Evening Standard
12 hours ago
- Health
- Evening Standard
Parents of autistic teenager who died hail ‘milestone' NHS training guidance
The learning disability mortality review (LeDeR) into the death concluded there had been a 'general lack of understanding and acknowledgement of Oliver's autism and how Oliver presented himself when in seizure' and that there had been a 'body of written evidence – alongside verbal requests from Oliver and Oliver's family – not to prescribe' Olanzapine.
Yahoo
25-04-2025
- Health
- Yahoo
Oliver McGowan training 'lifted scales from my eyes'
A senior doctor says he is shocked at how many deaths of people with learning disabilities and autism are "potentially preventable by really basic things". Dr Andrew Kelso is a consultant neurologist and the executive medical director at the Suffolk and North East Essex Integrated Care Board (SNEE ICB). The ICB, which commissions all health services, has rolled out the Oliver McGowan Mandatory Training on Learning Disability and Autism to its health and social care professionals. "That's the thing that keeps me awake at night," Dr Kelso told the BBC. "How little I knew before I went and how much I knew afterwards, and what a missed opportunity that might have been for me." The mandatory training - for all NHS staff who work with the public - is named after Oliver McGowan, an 18-year-old from Bristol who died in 2016 after he was given an anti-psychotic drug he was allergic to, despite repeated warnings from his parents. His mother Paula had lobbied for mandatory training to potentially "save lives". The NHS England target for the training is a third of staff. More than 70% of the SNEE ICB workforce have taken it, the highest in the region. In March 2024, there were 5,591 people with a learning disability or autism registered with a GP in Suffolk and North East Essex. Dr Kelso, a consultant specialising in epilepsy, said: "I thought I knew quite a lot about learning disability. "But the scales fell off my eyes when I was in the training and realised how much I didn't know - and that's in a career where I see people with learning disability all the time. "How many gaps are there in the knowledge of people that don't spend their entire career with learning disability and may just come across them every now and then? "That's the thing that keeps me awake at night, how little I knew before I went and how much I knew afterwards, and what a missed opportunity that might have been for me. And what a missed opportunity it might be for other clinicians." A Learning Disabilities Mortality Review (LeDeR) is published for each integrated care board, and analyses the lives and death of people with learning disabilities or autism. The SNEE ICB review said the life expectancy of someone with a learning disability or autism was 60 years old, 20 years below the rest of the population. It also pointed to aspiration pneumonia as a leading cause of death. According to Dr Kelso, aspiration pneumonia is "when the contents of your food go down your windpipe by mistake and introduce bacteria and sometimes chemicals in the lungs". He said understanding that someone may need more assistance could "markedly reduce the risk of someone with learning disability getting aspiration pneumonia and potentially reduce the risk of them dying". Owen Torence-Smith and Emile Eno-Daynes work with Ace Anglia, a disability advocacy service, to deliver the Oliver McGowan training, as people with lived experience of a learning disability and autism. Mr Torence-Smith, from Ipswich, has been educating healthcare professionals about autism for more than a year. "When I heard Oliver's story, it really hit me quite hard and I wanted to try and make a difference to avoid any more deaths," he said. "We're Oliver's voice, he hasn't got a voice. He lost his life. I'm doing this for him and for his mum and for his family." Mr Eno-Daynes, from Stowmarket, says he shares his personal experiences of living with a learning disability. "Some of the people training are really surprised at how I cope in day to day life," he said. "If this training wouldn't have happened there would have been more people with autism or learning disabilities in hospital having avoidable deaths. "This training is crucial." Being employed to deliver the training has given both Mr Torence-Smith and Mr Eno-Daynes paid employment and skills. This was the vision of Wendy Scott, the deputy director of nursing for learning disability and autism and clinical services at SNEE ICB. She designed how the ICB would deliver the mandatory training and commissioned Ace Anglia to employ trainers with learning disabilities and autism so they were fully supported. "There's a whole list of mandatory training in the NHS and it's a bit dry to be honest," Mrs Scott said. "They've absolutely loved it. It's because they're interacting with real people and their experience of the health service." Follow Suffolk news on BBC Sounds, Facebook, Instagram and X. NHS autism training mandatory after teen's death 'Lack of understanding' in autistic mental healthcare Call for action over learning disability deaths Suffolk and North East Essex Integrated Care Board Oliver McGowan Training
BBC News
25-04-2025
- Health
- BBC News
Suffolk doctor says Oliver McGowan training saves lives
A senior doctor says he is shocked at how many deaths of people with learning disabilities and autism are "potentially preventable by really basic things".Dr Andrew Kelso is a consultant neurologist and the executive medical director at the Suffolk and North East Essex Integrated Care Board (SNEE ICB). The ICB, which commissions all health services, has rolled out the Oliver McGowan Mandatory Training on Learning Disability and Autism to its health and social care professionals. "That's the thing that keeps me awake at night," Dr Kelso told the BBC. "How little I knew before I went and how much I knew afterwards, and what a missed opportunity that might have been for me." The mandatory training - for all NHS staff who work with the public - is named after Oliver McGowan, an 18-year-old from Bristol who died in 2016 after he was given an anti-psychotic drug he was allergic to, despite repeated warnings from his mother Paula had lobbied for mandatory training to potentially "save lives".The NHS England target for the training is a third of staff. More than 70% of the SNEE ICB workforce have taken it, the highest in the region. In March 2024, there were 5,591 people with a learning disability or autism registered with a GP in Suffolk and North East Kelso, a consultant specialising in epilepsy, said: "I thought I knew quite a lot about learning disability. "But the scales fell off my eyes when I was in the training and realised how much I didn't know - and that's in a career where I see people with learning disability all the time. "How many gaps are there in the knowledge of people that don't spend their entire career with learning disability and may just come across them every now and then? "That's the thing that keeps me awake at night, how little I knew before I went and how much I knew afterwards, and what a missed opportunity that might have been for me. And what a missed opportunity it might be for other clinicians." 'Reduce the risk' A Learning Disabilities Mortality Review (LeDeR) is published for each integrated care board, and analyses the lives and death of people with learning disabilities or SNEE ICB review said the life expectancy of someone with a learning disability or autism was 60 years old, 20 years below the rest of the population. It also pointed to aspiration pneumonia as a leading cause of death. According to Dr Kelso, aspiration pneumonia is "when the contents of your food go down your windpipe by mistake and introduce bacteria and sometimes chemicals in the lungs".He said understanding that someone may need more assistance could "markedly reduce the risk of someone with learning disability getting aspiration pneumonia and potentially reduce the risk of them dying". 'We are Oliver's voice' Owen Torence-Smith and Emile Eno-Daynes work with Ace Anglia, a disability advocacy service, to deliver the Oliver McGowan training, as people with lived experience of a learning disability and autism. Mr Torence-Smith, from Ipswich, has been educating healthcare professionals about autism for more than a year."When I heard Oliver's story, it really hit me quite hard and I wanted to try and make a difference to avoid any more deaths," he said."We're Oliver's voice, he hasn't got a voice. He lost his life. I'm doing this for him and for his mum and for his family."Mr Eno-Daynes, from Stowmarket, says he shares his personal experiences of living with a learning disability."Some of the people training are really surprised at how I cope in day to day life," he said."If this training wouldn't have happened there would have been more people with autism or learning disabilities in hospital having avoidable deaths."This training is crucial." Being employed to deliver the training has given both Mr Torence-Smith and Mr Eno-Daynes paid employment and was the vision of Wendy Scott, the deputy director of nursing for learning disability and autism and clinical services at SNEE ICB. She designed how the ICB would deliver the mandatory training and commissioned Ace Anglia to employ trainers with learning disabilities and autism so they were fully supported."There's a whole list of mandatory training in the NHS and it's a bit dry to be honest," Mrs Scott said."They've absolutely loved it. It's because they're interacting with real people and their experience of the health service." Follow Suffolk news on BBC Sounds, Facebook, Instagram and X.
