
Oliver McGowan's bereaved parents praise 'milestone' NHS update
The parents of a teenager with special needs who died after being prescribed an anti-psychotic drug have hailed the publication of new NHS guidance as a "significant milestone".Oliver McGowan, 18, who was autistic and had epilepsy, was being treated for a seizure when he was given olanzapine to sedate him. He died in intensive care 17 days later after a rare side effect caused his brain to swell.A report in 2020 found his death was "potentially avoidable", with his parents Paula and Tom McGowan, from near Bristol, blaming the "ignorance" of medics.The couple said they hoped the new Oliver McGowan Code of Practice would bring "meaningful change".
After the drug was administered, Oliver's temperature rose and he showed signs of neuroleptic malignant syndrome.The medication was stopped on 28 October 2016 and a CT scan two days later showed he had sustained a serious brain injury. He died on 11 November.A review into Oliver's death concluded there had been a "general lack of understanding and acknowledgement of Oliver's autism and how Oliver presented himself when in seizure".
His parents have campaigned since his death for improvements in the system, and on Thursday the government published new guidance it said would ensure safer, more personalised care for people with a learning disability and autistic people.Mr and Mrs McGowan 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."They added: "This is a true example of what meaningful change looks like - giving a voice to those who are not always seen or heard."
The government said training would be backed by funding as part of the Learning and Development Support Scheme for adult social care this autumn.Care minister Stephen Kinnock praised the McGowans' "incredible campaign", adding: "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."
Jackie O'Sullivan, of disability charity Mencap, said the new guidance has the potential "to transform care for people with a learning disability".She added: "Whilst we have seen improvements in recent years, the life expectancy of people with a learning disability is still a shocking 23 years less than everyone else and people die of conditions which are entirely treatable."

Try Our AI Features
Explore what Daily8 AI can do for you:
Comments
No comments yet...
Related Articles


Times
an hour ago
- Times
Simple blood test could provide first reliable diagnosis for ME
Scientists have found biological signatures in the blood of people with myalgic encephalomyelitis (ME), a breakthrough that could lead to the first reliable test for the debilitating condition. ME, also known as chronic fatigue syndrome (CFS), affects an estimated 400,000 people in the UK. Symptoms can include pain, brain fog and extremely low energy levels that do not improve with rest. These often become dramatically worse after even minor physical effort, a phenomenon known as post-exertional malaise. There is no cure and the cause is unknown. A diagnosis is typically made by ruling out other illnesses, a process that can take years. The new study, led by researchers from Edinburgh University, may mark a turning point. Using data from the UK Biobank, they compared blood samples from 1,455 ME patients with those of more than 131,000 healthy people and identified dozens of molecules that differed in concentrations between the two, as well as different cell counts. The changes in the ME patients, who all had mild to moderate forms of the disease, were largely related to chronic inflammation, insulin resistance and liver dysfunction. The findings were replicated in a group of American patients and healthy controls. Professor Chris Ponting, of the university's Institute of Genetics and Cancer, said: 'For so long people with ME/CFS have been told it's all in their head. It's not. We see [it] in their blood. 'Evidence of a large number of replicated and diverse blood biomarkers that differentiate between ME/CFS cases and controls should dispel any lingering perception it is caused by deconditioning and exercise intolerance.' The study found 116 'biomarkers' for ME in the blood of men and women with the condition — a key finding, because ME can affect the sexes differently. These markers did not change according to how active the patients were, consistent with the view that graded exercise therapy, which aims to gradually increase activity levels, is unlikely to be helpful. The strongest differences were found in people who reported post-exertional malaise, which may underscore its central role in the illness. Dr Sjoerd Beentjes, of the university's School of Mathematics, said: 'Blood differences are sometimes attributed to reduced activity levels rather than ME/CFS directly. Our study provides strong evidence ME/CFS affects blood traits through paths other than activity.' The authors stressed that the research was at an early stage with no guarantees a test would be possible. The government pledged last year to improve ME research and the NHS agreed to assess services for patients across England after an inquest into the death at 27 of Maeve Boothby O'Neill in 2021. She had suffered from ME since she was a teenager. The daughter of Sarah Boothby and Sean O'Neill, a senior journalist at The Times, she was left bedbound, unable to speak and malnourished. The coroner issued a prevention of future deaths report in October, the first of its kind for ME, and urged Wes Streeting, the health secretary, NHS officials and health bodies to take action to address the 'non-existent' care and lack of funding for research.


Times
an hour ago
- Times
Last chance for MPs to think again on assisted dying
The assisted dying bill has split voters and MPs TOLGA AKMEN/EPA I n November, when the assisted dying bill had its second reading in the House of Commons, its sponsor Kim Leadbeater reassured fellow MPs that a vote in favour was only 'to continue the debate' and ' to subject the bill to line-by-line scrutiny'. That conversation — which permitted wavering MPs to interrogate their decision further — is drawing to a close. Today, MPs will vote on the third and final reading of the bill, after which it could go to the House of Lords. What has emerged from that 'line-by-line scrutiny', however, has chilled many legislators and observers to the core. Firstly, there is the nature of the scrutiny itself. Because this was not a government bill, but a private member's one, Ms Leadbeater was able to handpick the committee and exercise control over the witnesses called. It did not boost confidence in an impartial process. Indeed, four Labour MPs raised concerns that the committee's evidence was 'weighted towards those who were known to be supportive of the bill'. Of eight witnesses called from foreign jurisdictions with an assisted dying law, for example, not one was critical of how the legislation had played out — despite there being numerous experts with misgivings, such as Theo Boer of the Dutch Health Council. Formerly pro-euthanasia, he became horrified by the steady expansion of the system and its eligibility from what was first intended. Although the UK bill is being sold on the basis that it is strictly limited to those with a terminal diagnosis of less than six months, Mr Boer has warned that 'our safeguards were presented that way too.' In the Netherlands, assisted dying provision now includes children over 12 years old and those with psychiatric disorders. If the passage of this bill has been distinguished by procedural ruthlessness, that has been matched only by its intellectual woolliness. The absence of tight, ethical safeguards to protect the vulnerable — in particular those with mental health problems — has caused deep anxiety in organisations at the sharp end of patient care: the Royal College of Psychiatrists, the Association for Palliative Medicine, and the Royal College of Physicians have all raised serious concerns. Tellingly, the two ministers whose departments would be most involved in the bill's implementation, the health secretary Wes Streeting and the justice secretary Shabana Mahmood, are both opposed. Many safeguarding amendments have been shrugged aside. MPs who vote yes on Friday will be voting to permit doctors to raise the subject of ending a patient's life, including with people who have learning disabilities. The door is open for private contractors to get involved in running the service with no transparency obligations or cap on profits. And as the former prime minister Gordon Brown argues, the legal right to assisted dying would not be matched by any equivalent right to high-quality palliative care, making a cruel nonsense of real choice for many of those in extremis. Sir Keir Starmer has repeated his support for the principle of the bill, while distancing himself from the legislation. But should its proposals take full effect in 2029 as stipulated, close to the next general election, troubled voters who consider it a deal-breaker will inevitably connect it to the prime minister. There are many others, too, who back assisted dying in good faith, but this flawed bill delivers a far greater number of dangers than it does solutions. Before it is too late, its parliamentary supporters can, and must, think again.

Rhyl Journal
an hour ago
- Rhyl Journal
Alzheimer's and Parkinson's charities identify new ways to reuse current drugs
Experts say that by repurposing drugs, they can 'increase the shots on target' at tackling the diseases. This method of drug development could also reduce the time patients are left waiting for new treatments by up to 10 years, they added. It comes after the NHS spending watchdog rejected the use of new Alzheimer's drugs lecanemab and donanemab for widespread use in the health service. The drugs were approved for use in the UK last year by the UK's medicines regulator but the NHS spending watchdog, the National Institute for Health and Care Excellence (Nice), said they could not be used in the NHS because the benefits are 'too small' to justify the cost. Now charities Cure Parkinson's and Alzheimer's Research UK have joined forces to find current drugs that may tackle some of the common biology behind both diseases. After presentations to the International Linked Clinical Trials (iLCT), which was set up by Cure Parkinson's over a decade ago, experts from both fields will select the most promising drugs for both Parkinson's and dementia, so they can be moved quickly into clinical trials. Weight loss jabs are already being investigated for their effectiveness in treating symptoms of both diseases and experts hope to uncover more drugs that can have multiple uses. Semaglutide, the active ingredient for weight loss and diabetes drugs Wegovy and Ozempic, is being examined in clinical trials to see whether it can help patients with Alzheimer's disease or Parkinson's. Trial results for the Alzheimer's trial are expected to be published later this year. Dr Sheona Scales, director of research at Alzheimer's Research UK, told the PA news agency that the iLCT project had already been 'hugely successful' with people who have Parkinson's, adding: 'Around 30% of disease modifying therapies that are in clinical trials for Parkinson's disease came through this process. 'What we wanted to do is to build on their knowledge and experience and expertise in order to be able to bring a process similar to that to Alzheimer's disease.' Dr Scales said that there are some 'common grounds' between Parkinson's and Alzheimer's – both are neurodegenerative diseases and have some 'common biological processes' – such as inflammation, mitochondrial dysfunction and 'protein misfolding' – which could be targets for repurposed drugs. 'Getting multiple drugs that are targeting the disease is really important to us,' she said. 'Testing different types of drugs and getting as many shots on target is important.' She said: 'Repurposed drugs have already been demonstrated to be safe for use in humans development of new drugs for different diseases is a long process. 'What essentially bringing repurposed drugs does, is help to accelerate the drug development pipeline – it could save between five and 10 years within that process, compared to taking a new drug through clinical trials for the very first time.' Helen Matthews, chief executive of Cure Parkinson's, said the iLCT was originally set up to identify drugs that can potentially 'slow down, stop or reverse Parkinson's'. She added: 'It was through this programme that we realised that there were so many drugs that were also being looked at in the dementia field and there were commonalities there in terms of the drugs looking to reduce inflammation, or whatever it might be, there were specific pathways that those drugs were working on that could be beneficial for both disease areas. 'So given that we were already doing the (work) every year, it made sense to join forces in this way, just to add efficiencies. 'Because if you're looking at the same drugs, we'll only do that digging once, you know, only do that compilation of the dossiers once, so that you can actually take the learning for both diseases and then actually look and see which might be beneficial.' She said that the 'sharing of knowledge and digging' could also be shared with other disease areas, such as MS. And on lecanemab and donanemab, Dr Scales added: '(These) were the first disease-targeting therapies that have been licensed in the UK, but obviously are not available on the NHS at the moment. 'They showed for the very first time that we were able to alter the course of the disease. 'And what we're looking forward to now is what the next generation of treatments can bring us and how we can target different parts of the disease.' Dr Lucy Devendra, head of research at Alzheimer's Society, said: 'Repurposing medicines which are already known to be safe can help us find new treatments for the diseases that cause dementia much quicker. 'Although it is still early days, it's encouraging to see a renewed focus on this type of research and development.'