Chris Packham backs call for delayed report into autistic deaths to be published
He is among campaigners who have written to Health Secretary Wes Streeting to say the country is 'standing by year after year while vulnerable people die'.
Campaigners have written to Health Secretary Wes Streeting ( Lucy North/PA)
The latest Learning from lives and deaths report (LeDeR) – expected to show data for 2023 – was due to be published around November last year but it is understood it has been held up over 'practical data issues'.
The LeDeR programme was established in 2015 in an effort to review the deaths of people with a learning disability and autistic people in England.
Annual reports are aimed at summarising their lives and deaths with the aim of learning from what happened, improving care, reducing health inequalities and preventing people with a learning disability and autistic people from early deaths.
In the letter to Mr Streeting, signed by various groups including charities Autism Action and Mencap as well as bereaved families, the delay to the latest report was branded 'unacceptable'.
They said: 'It took at least 17 years for the Government to establish this vital initiative after the 1998 finding that people with learning disabilities were 58 times more likely to die before the age of 50 than the general population.
'Although it was established to 'get to the bottom of why people with learning disabilities typically die much earlier than average, and to inform a strategy to reduce this inequality,' 10 years later – too many people are still dying premature, preventable deaths.
'In response, the Government is showing a shocking lack of urgency and has let the only discernible tool to understand and act on these deaths be caught up in delay and bureaucracy.'
The most recent report, which showed data for 2022, confirmed care and outcomes for people with learning disabilities are still often below acceptable standards compared with the general population.
Of the 2,054 adults with a learning disability who died that year and had a completed recorded underlying cause of death, 853 (42%) had deaths classified as avoidable.
This was down on the 2021 figure of 50% of avoidable deaths among adults with a learning disability, but was 'significantly higher' than the percentage for the general population across Great Britain, which was 22.8% in 2020 – the latest data available at that time.
Last month, the parents of an autistic teenager who died after being prescribed medication against his and his parents' wishes hailed the publication of guidance they hope will safeguard others as a 'significant milestone'.
A report in 2020 found 18-year-old Oliver McGowan's death four years earlier at Southmead Hospital in Bristol was 'potentially avoidable'.
He died in 2016 after being given the antipsychotic 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.
In June, his parents – who have campaigned since his death for improvements in the system – welcomed the publication of new guidance aimed at ensuring safer, more personalised care for people with a learning disability and autistic people.
Learning disability charity Mencap described the delay to the latest LeDeR report as 'disappointing and worrying', and said the Government must 'not shy away from the uncomfortable truth that for many years the healthcare system has failed people who are already marginalised in so many ways'.
Autism Action chief executive Tom Purser accused the Government of 'systemically devaluing the lives of autistic people and those with learning disabilities' by delaying the long-awaited annual report and giving campaigners and families 'empty reassurances'.
He added: 'There must be systemic changes in the way this information is collected, recorded, shared and acted upon – and it needs to be accountable and written into law. We are calling on this data to be published annually and independently of the Government and the NHS.
'Without these changes the Government has nothing to learn from and more vulnerable lives are at stake.'
A Department of Health and Social Care spokesperson said: 'We inherited a situation where the care of people with a learning disability and autistic people was not good enough and we recently published a code of practice on training to make sure staff have the right knowledge and skills to provide safe and informed care.
'We are committed to improving care for people with a learning disability and autistic people. The Learning from Lives and Deaths report will help identify key improvements needed to tackle health disparities and prevent avoidable deaths.'
Try Our AI Features
Explore what Daily8 AI can do for you:
Comments
No comments yet...
Related Articles
Scotsman
2 hours ago
- Scotsman
How Scotland regularly fills a 'mass grave' of drug victims who might have lived
Sign up to our daily newsletter – Regular news stories and round-ups from around Scotland direct to your inbox Sign up Thank you for signing up! Did you know with a Digital Subscription to The Scotsman, you can get unlimited access to the website including our premium content, as well as benefiting from fewer ads, loyalty rewards and much more. Learn More Sorry, there seem to be some issues. Please try again later. Submitting... There are roughly 91 days in every statistical quarter of the year. In the quarter from March 1 to May 31, 2025, there were 312 suspected drug-related deaths. That's more than three a day, every day. Over the 13 weeks, it is 24 every week. It is an increase of 15 per cent over the last 13-week quarter. It is similar (4 per cent lower) than the same period in 2023 but 7 per cent higher than that period in 2024. Whatever year you want to take, it is a harrowing number, especially when you give it some perspective. Advertisement Hide Ad Advertisement Hide Ad Just imagine, every week, for 13 weeks in a row there was a train crash between Glasgow Central and Paisley Gilmour Street, or Haymarket and Dundee, or anywhere in Scotland for that matter – and the result was 24 deaths. Every week. For 13 weeks. And it is getting worse. What do you think the public response would be? Would we not be demanding that the Scottish Government do something to prevent the mounting loss of life? Would any politician be able to look in the mirror and say 'I am doing my best to prevent this daily and weekly roll-call of death' if the numbers just kept being added too? Advertisement Hide Ad Advertisement Hide Ad A heroin addict lies sprawled on a mattress (Picture: Chris Young) | Universal Images Group via Getty SNP's perverse policies It's all very well saying that people should not get on the train that might take them to an early death, but few if any of those who make that journey expect early death to be the outcome for them. More often than not, people starting out on this journey think it's always going to happens to someone else. By the time they realise they are watching in slow motion their own but sadly inevitable demise, they are often beyond having the capacity to get off that train. They need help. They need to be helped out of their addiction and they need rehabilitation so they don't think one day they can easily have a day trip without any consequences. Currently, instead of trying to improve our drug rehabilitation, the policy of the Scottish Government is quite the reverse; indeed it's perverse. The Scottish Government is trying to make it easier for those addicted to take their daily journey just that little bit smoother, a little less of a trouble. Advertisement Hide Ad Advertisement Hide Ad There's a pilot in Glasgow for a 'drug consumption room', where addicts are given a safe place to take their drugs – the provision of such a service consumes scarce resources that could instead be used to provide rehabilitation that can help people making that daily commute to catastrophe. It's like taking away the ticket inspectors, removing the barriers and saying here, try first class instead, it's a more comfortable journey. When the train crashes, it doesn't matter which carriage you are in. You are a fatality, another addition to the statistics – even if the journey was that little bit easier because you could inject the drug of your choice or the addictive substitute of the authorities' choice, you still end up at the destination of death. Bully-state interventions Many of the people advocating an easier journey – essentially in the so-called public health specialism – are also quite sanguine if not openly supportive of making access to drugs easier too. Various narcotics would be declassified and in other ways made easier to come by. Likewise, by making the base cost of alcohol higher through minimum pricing legislation, there is evidence on the street that various drugs are now intentionally made available by suppliers at a cost lower than alcohol so new entrants to drugs become addicted and board that train. Advertisement Hide Ad Advertisement Hide Ad What is the public health response to an alcohol policy that has failed while persecuting responsible drinkers and lining the pockets of the supermarkets? Why, it is to go into denial – for they themselves are addicted to bully-state interventions of directing the behaviour of the law-abiding majority – and increase the minimum price further. Annemarie Ward, chief executive of the charity Favour UK, which seeks to improve the provision of drug rehabilitation services across the country, has found the Scottish Government to be profoundly difficult to work with, often talking of providing better services only to reduce the number of rehab beds available. Ward notes that the number of suspected drug deaths in the last three quarters is: Q4 2024: 215 deaths; Q1 2025: 272 deaths (+26 per cent); and Q2 2025: 312 deaths (+15 per cent). That's a 45 per cent surge in six months. 'The flames are rising, the bodies are stacking up, and the state has the audacity to rebrand failure as calm,' says Ward. Advertisement Hide Ad Advertisement Hide Ad The campaigner regularly takes the Scottish authorities to task for saying the situation is 'stable' – responding that it is 'an obscenity, like calling a mass grave this year as similar to one last year'. Over 1,200 people needlessly dying last year was a mass grave of great shame to Scotland and will become another such mass grave of shame if, as seems likely, it is repeated this year too. 18 years of failure Scotland having the highest drug-related deaths in Europe is a failing of devolution because, despite having the same laws regarding drug enforcement, the Holyrood parliament has the powers to deal with Scotland's own problems. It is also a failure for the prevailing 'whae's like us' culture in Holyrood, where trying to do things differently from England is given preference – even when their policies work – and comes at the price of needless deaths. Most obviously though, it is a failure of the SNP government, now in power for some 18 years and clearly in control of rehabilitation services that it has failed to develop – while focussing on its own addiction towards holding referendums. What an utterly awful trip Scotland is on, and until the SNP is removed that train will crash every week.
Medical News Today
5 hours ago
- Medical News Today
Health insurance for older adults: Understanding your Medicare coverage
Medicare offers many health insurance options, and understanding coverage options, rules, and processes is key. People who become eligible can begin considering Medicare options before turning is government-funded health insurance for people ages 65 and older. It is also available to individuals under 65 with specific health conditions, including amyotrophic lateral sclerosis (ALS) or end stage renal disease (ESRD).Medicare is different from Medicaid, which helps people with low incomes and resources manage their healthcare to know MedicareBefore a person turns 65, they may consider their current health insurance, when it will end, and whether they may need any new or additional health coverage in the also a good time to prepare for Medicare, which many Americans will be eligible for free of charge, depending on their working Medicare comprises Part A and Part B, which cover most inpatient and outpatient Medicare parts include Medicare Advantage (Part C), Part D prescription drug plans, and Medigap supplement insurance plans. Private insurers administer these plans, some of which also include additional benefits and can choose a plan or combination of plans by considering:their budgetwhether they have doctor, hospital, or clinic preferencesboth their current and possible future health conditionstheir medicationsOnce eligible for Medicare, some people are automatically enrolled. If not, they can enroll online, by post, or in person at a local Social Security in MedicareIndividuals may be automatically enrolled in Medicare parts A and B when they:have been receiving disability benefits and will be turning age 65 in 4 monthsare not turning age 65 but have been receiving disability benefits for 2 yearsare not turning age 65, but they have received an ESRD or ALS diagnosisTo avoid late enrollment penalties, those not automatically enrolled need to sign up during an enrollment enrollment periods are as follows:Enrollment periodTimeframeDuring this time, you can…initial enrollment period (IEP)begins 3 months before a person's 65th birth month, continues throughout their birth month, and ends 3 months laterenroll in any planMedicare Advantage open enrollment period (MA-OEP)January 1 through March 31 every year• change to another Medicare Advantage Plan with or without drug coverage• leave a Medicare Advantage Plan to return to Original Medicare and enroll in a separate Part D prescription drug planopen enrollment period (OEP)October 15 through December 7 every year• leave or change to another Medicare Advantage Plan• sign up for, change, or leave Part D prescription drug plans• switch from Original Medicare to Medicare Advantage• switch from Medicare Advantage to Original Medicarespecial enrollment period (SEP)varies• sign up for a Medicare Advantage plan• sign up for a Part D prescription drug plan• change to another planMedicare coverageThe different Medicare parts include the following coverage:Medicare Part APart A covers inpatient hospital covers many of the services a person receives when admitted to the hospital or other eligible inpatient healthcare does not cover most outpatient care, hospital room extras, private, custodial care, or long-term Part BPart B covers outpatient services, including diagnostic tests relating to health also covers some preventive services and limited prescription some doctor visits a person receives while admitted to the hospital may come from Part B Part D prescription drug plansPeople with Original Medicare can enroll in a Part D drug Part D drug plan has a formulary, which is a list of covered insurers administer these plans, and it is important to consider the different plan options, including the medications the plan covers, when comparing Advantage (Part C)Medicare Advantage plans must include the same benefits as Original Medicare parts A and B. However, they typically include additional benefits such as fitness, vision, and dental. Most Medicare Advantage plans also include the prescription drug coverage of Part D can use Medicare's plan finder to search for plans in their supplement insurance (Medigap)Only people with Original Medicare can enroll in a Medigap plan, which covers some of Original Medicare's out-of-pocket are currently 10 different Medigap plans to choose from, although not all plans are available in all areas, and costs can vary by costsMedicare costs will vary by plan but can include monthly premiums, deductibles, coinsurance, and AIn 2025, Medicare Part A costs include:Monthly premiums: Most people do not pay a Part A premium, but this will depend on their working Individuals must pay the Part A deductible of $1,676 per benefit period before the plan covers its share of costs. A benefit period begins when a person is admitted to the hospital and ends when they have not received any inpatient care for 60 consecutive Depending on the length of a person's hospital stay, copayments can range from $0 to the full cost of B2025 Medicare Part B costs include:Premiums: Premiums start from $185 per month and increase based on a person's People must pay a $257 deductible before the plan pays its share of eligible There is a 20% coinsurance that applies to the Medicare-approved amount for eligible Part B items or Advantage (Part C)Medicare Advantage plan costs vary but can include:monthly premiumsannual deductiblescopaymentscoinsuranceAccording to the Centers for Medicare & Medicaid Services (CMS), in 2025, the average Medicare Advantage monthly premium is around $ D prescription drug plansPremiums and other out-of-pocket costs for Medicare Part D prescription drug plans vary by plan, plan provider, and a person's 2025, the national base premium is $36.78, and a person's plan price can increase based on their plansIndividuals will pay a separate premium for a Medigap plan, which can vary by plan provider and billingMost people will not receive a bill from Medicare, as it generally operates a Fee-For-Service (FFS) model. This means that doctors, healthcare professionals, facilities, hospitals, and clinics bill Medicare directly for each item or service they may automatically deduct plan premiums from Social Security benefits, but if not, it will send a Medicare premiumsThere are various ways to pay Medicare bills each month, including:through Medicare's website, with a debit or credit cardby mail, using a check, money order, or payment formAnother way to pay Medicare bills is through Medicare Easy Pay. This free service allows people to pay their monthly Original Medicare premiums through automatic bank withdrawals. Individuals can print and complete the Authorization Agreement for Preauthorized Payments form (SF-5510), which is available in English and can be complicated, but understanding the basics can help individuals focus on their coverage Medicare parts A and B cover inpatient and outpatient medical services. A person can add other plans to cover take-home prescription medications and some of Original Medicare's out-of-pocket costs. Other bundled plans are also website allows people to browse the different plan options that are available locally, which can help them make the best choice for their healthcare.
BreakingNews.ie
6 hours ago
- BreakingNews.ie
'A year too long': Sinn Féin senator hits out at delay to miscarriage leave law
A Sinn Féin senator has called for more awareness to be raised on the effects of miscarriages after her bill was pushed back by the Government. Nicole Ryan introduced a bill that would entitle women to at least five days of paid leave and their partners to two and a half days. Advertisement The proposed legislation would also lead to the establishment of a confidential opt-in register of pregnancy loss. However, the Government has pushed back the Bill by 12 months Speaking to Ms Ryan spoke of her disappointment at the delay and voiced her concern about what women will go through in the meantime. "12 months is a very long time, and there will be women who are going through miscarriages, various pregnancy losses under 23 weeks, so it was disappointing to see that push back from the Government on this really important issue." Advertisement Ms Ryan said more must be done, by the Government and society in general to make people aware of how a miscarriage can affect someone's life. The Sinn Féin senator shared what women have been telling her of their experience in the workplace following a miscarriage. "A lot of the time, for women, it is a lottery of who your employer is, for instance. "Some have been ment with kindness, others have been met with coldness and questions of when are you going back to work, like you didn't just experience something incredibly traumatic in your life. Advertisement "Some people may not understand how complicated the issue is and how women have lost something. It is a grieving process, whether it is a week or 22 weeks, it is still a loss regardless." "Women are sometimes afraid to say to their employer that they have had a miscarriage, because then it seems they were trying for a child, and they are afraid of being dismissed, or if they are on probation, their probation getting extended or ended. "There is a lot of education that needs to happen for employers, and what a woman would go through. Sometimes a miscarriage could last a whole month or longer, because you have to do check-up appointments, and sometimes take a medical intervention a second time." Ms Ryan was among a number of senators who spoke in the Seanad about their experience of miscarriage. Advertisement Through this experience, Ms Ryan spoke on the lack of support available and the way people talk regarding miscarriages. "Through my experience, I just didn't feel massively supported at all in what I was going through. "Sometimes people say things off the cuff, like at least you can get pregnant, or at least it was only a couple of weeks, you can get on with it. "The minute you find out you are pregnant, you have knocked out a life, you think about their hair colour, their eye colour, what school they might go to, you are planning things in your own head. Advertisement "Then, when that is suddenly ripped away from you, you lose a sense of your own self for a while. It is not as easy as picking myself up and getting on with it." The time that followed Ms Ryan's miscarriage made her more aware of what happens during pregnancy loss, many symptoms and effects she admitted she was unaware of. Ireland Abortion laws 'still failing women who struggle to... Read More The Cork senator says education is key going forward to best help women during a miscarriage. "Even when I was going through it in the hospital setting, I wasn't told a lot of things that were going to happen to me. "I was just told, take this medication, it is going to be a bad period. It was nothing like a bad period; it was way worse. Everything through that miscarriage was incredibly traumatic. "We are doing a disservice to women by not even explaining some of the most basic things around the choices we have to make when it comes to pregnancy loss."
