ME care reforms promised after woman's tragic death
The Department of Health and Social Care (DHSC) stated its intention to publish a new plan, asserting it is "committed to changing attitudes and transforming care" for individuals with Myalgic Encephalomyelitis /Chronic Fatigue Syndrome (ME/CFS).
She had suffered with ME for a decade before dying at her home in Exeter in October 2021 from severe malnutrition.
Her inquest revealed she had been admitted to the Royal Devon and Exeter Hospital three times in the year of her death for malnutrition treatment.
The 10-day hearing detailed her final months, during which she was confined to bed, unable to chew food, and struggled to drink due to being unable to sit up.
Miss Boothby-O'Neill, the daughter of Sean O'Neill, a journalist with The Times newspaper, had been suffering from fatigue since the age of 13, which got worse after she completed her A-levels.
Deborah Archer, now an area coroner for Devon, Plymouth and Torbay, concluded Miss Boothby-O'Neill had died from natural causes 'because of severe myalgic encephalomyelitis (ME)'.
Last year she wrote to the Government to highlight a lack of specialist beds, 'extremely limited' training for doctors and lack of available funding for research and treatment of the condition.
On Tuesday, the Government said that it has created a plan which 'outlines clear steps to improve care for patients, by investing in research and offering access to care in the community'.
The Department of Health and Social Care (DHSC) acknowledged that many people with the condition 'currently struggle to access appropriate care tailored to their complex condition'.
The plan, which is expected to be published on Tuesday, will include new training for NHS workers, DHSC said.
And the document will also include funding for research, the DHSC said.
Public health minister Ashley Dalton, said: 'ME/CFS is a debilitating illness that can severely limit patients' ability to participate in everyday activities, maintain employment, or enjoy family and social life.
'Today's plan will help tackle the stigma and lack of awareness of this condition through improved training for NHS staff.
'And through our neighbourhood health services, we will ensure patients suffering from the effects of ME/CFS can access quality care, closer to home, as pledged in our 10-Year Health Plan.
But Action for ME said that the plan 'does not go far enough'.
Sonya Chowdhury, chief executive of the charity, said: 'We appreciate the time DHSC has put into the delivery plan and their engagement with us and the ME community throughout.
'However, the plan simply does not go far enough. We are at the stage now where we need more than rhetoric, we need to take a strategic approach if we want a different outcome. What is proposed in the plan will not offer this.
'We must have a funded, dedicated research hub to leverage our world-leading life sciences sector to unlock treatments and ultimately cures for ME.
'Without a commitment to better co-ordinate research, people with ME will continue to be neglected, overlooked and, for many, confined to their homes.
'ME charities have been calling for this funding to be accelerated for years and we are still not seeing a strategic approach to address this historic shortfall. Once again, it feels like people with ME have been ignored.'
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Telegraph
16 minutes ago
- Telegraph
Bono linked to special needs schools facing government crackdown
Bono is in line to make money from special needs schools largely funded by the UK taxpayer, a Telegraph investigation can reveal. The U2 frontman is an investor in Outcomes First, which owns 71 privately operated schools in the UK for more than 4,200 pupils with special educational needs and disabilities (Send). Hundreds of such private schools have opened up in recent years because of a surge in pupils diagnosed with special needs and a shortage of state-run places. The private schools get most of their income from British taxpayers, at an estimated cost of more than £2.4bn a year. The Government has pledged to crack down on 'excessive profit-making' in the Send sector amid concerns that private companies are making millions off the growing special needs crisis in Britain. Outcomes First charges as much as £157,000 a year for pupils with complex special needs. The business is racing to expand its operations after a post-Covid surge in the number of Send pupils entitled to publicly-funded school places. It has converted deserted office blocks in urban business parks into Send schools as part of this rush to expand, with some head teachers still not hired weeks before schools are due to open. Bridget Phillipson, the Education Secretary, said: 'We inherited a broken Send system failing to meet the needs of children and families, and it's appalling that some companies are capitalising on this crisis. 'Through our Plan for Change, we're building a system where all children can achieve and thrive. That requires all schools to be firmly focused on improving children's outcomes – not excessive profit-making.' The number of pupils receiving Send support has swelled over the past decade, largely driven by an increase in diagnoses of autism, ADHD and mental health problems. This has resulted in skyrocketing numbers of education, health and care plans (EHCPs) being handed out. These are legally binding documents which spell out individual teaching requirements for Send children that a local authority must pay for. They can include places at private specialist schools. A record 639,000 children in England held an EHCP in January, up 11 per cent on the previous year. The number of children with EHCPs at private Send schools increased by 17,000 between 2018-19 and 2023-24. Outcomes First, the largest operator of private Send schools, had a turnover of £264m last year. A majority stake in the company was acquired in 2023 by The Rise Fund, a private equity firm co-founded by Bono. As an investor in the firm, the U2 singer also has an investment in Outcomes First, meaning he personally stands to make money if it is sold for a profit. The exact sum will depend on several factors including the sale price of the company and the amount of investors owed money. TPG, The Rise Fund's parent group, declined to say how much Bono had invested in the fund or how many investors it had in total. A spokesman for Bono did not comment. One source suggested any potential gain from a sale of Outcomes First would represent a small part of his overall investment in The Rise Fund. Outcomes First was valued at around $1bn (£740m) at the time of its sale to The Rise Fund, according to Bloomberg. The group has increased the number of schools it owns by more than a quarter since then, and plans to open eight more in the coming year to cater for the increased demand. 'No-nonsense investors' The Rise Fund promises investors 'strong financial returns' while helping 'address various societal challenges globally'. It said in 2023 it hoped the purchase of Outcomes First would 'achieve quantifiable impact and positive outcomes alongside strong business performance'. The fund's latest annual accounts show an average gross return on investor capital of 80 per cent. A source close to the company said: 'The Rise Funds, if they sold for profit, could make a considerable gain for both the fund and its investors, which also includes Bono.' It has invested around $12bn into more than 85 companies in the decade since it was founded. The Telegraph understands Bono is not involved in direct decision-making over the fund's investments, with appointed fund managers instead responsible for this. The singer, who has built a post-U2 career as a philanthropist, said last month he launched the fund because 'I didn't want a warm-and-fuzzy concessional capital. I wanted to work with proper, no-nonsense investors'. Bono co-founded the fund alongside Jeff Skoll, the former eBay chairman, with help from its parent company TPG. Other board members include Sir Richard Branson, founder of the Virgin Group. Asked in a YouTube interview in June for his response to claims that his philanthropy is 'tokenistic', Bono said: 'People are right to be cynical. They are correct. We should be very, very suspicious of public philanthropy and we should ask hard questions of it. And so I'm with people that ask those hard questions. 'In a way, it's a promotional vehicle for somebody like me and anything you do in public, if it makes you look good in public, you should be a little suspicious of it.' Private equity swoops in Private equity firms have begun buying up independent Send school chains in recent years and pumped millions into helping them expand so they can later be sold for a profit. Analysis shows operating profits at the six largest private Send school providers jumped more than 38 per cent between 2022 and 2024, as they opened new schools to meet demand. Part of the attraction is that local authorities are legally obliged to pay for children to attend private Send schools if they pass a special assessment, meaning almost all of their income is guaranteed by UK taxpayers. Companies analysed by The Telegraph underlined the legal requirement for councils to pay for private Send education in their latest financial accounts, with some referring to local authorities as their main 'customers' or 'primary revenue stream'. The groups also highlighted their exemption from Labour's VAT raid on private schools, with one stating that 'our customer base is predominantly local authorities who will have the mechanism to reclaim the VAT that is charged'. Ms Phillipson is concerned that private Send schools are ultimately failing to improve results for vulnerable children despite 'vast sums' of taxpayer money being spent on them. The number of private Send schools has nearly doubled over the past decade, rising from 456 to 803. Outcomes First, which largely caters for children with autism, ADHD and social, emotional and mental health needs, has boasted about its ability to 'scale quickly' to serve new areas of need across the country. Outcomes First plans to open Penny Tree School in September, a new Send school in Birmingham for autistic pupils aged four to 19. Until at least July last year the school's building, which backs onto an A road next to the local cross-city rail station, served as an office block for a construction firm. Options Autism, owned by Outcomes First, listed an 'urgent' advert for a deputy head teacher for Penny Tree School earlier this year and was still recruiting a headteacher to lead it as of June. Fees 'triple those charged by state schools' Average fees at some of the largest private Send school chains are more than triple the annual bill at their state-backed equivalents, according to analysis of Ofsted reports. Special schools owned by Outcomes First charge an average fee bracket of between £57,989 and £88,989, with prices increasing according to the complexity of a child's needs. The figure is significantly higher at some schools including Outcomes First-owned Red Moor School in Cornwall, where fees for one high-needs pupil were £157,253 a year at its latest inspection. By contrast, a place at a state-run Send school costs around £24,000 per pupil, according to the National Audit Office (NAO). A spokesperson for Outcomes First said its fees placed it 'among the best value providers nationally' and that 99 per cent of its schools in England are rated good or outstanding by Ofsted. Average fees at the Witherslack Group – the second-largest private Send school chain – range between £77,547 and £104,853 per pupil and can hit as much as £130,752 in some schools. Meanwhile, a specialist autism school in Somerset, which is owned by Aspris, a private Send chain, charges up to £120,150 in annual fees per pupil. North Hill House school in Frome was rated 'inadequate' at its latest standard Ofsted inspection last February – the lowest possible rating. An additional Ofsted inspection last November said it had since improved standards. Aspris said a further inspection by Independent School Standards in January 2025 found the school met the required quality checks. Pay rises for directors Directors of some private Send school groups also paid themselves large salaries last year, The Telegraph can disclose. The boss of Aspris, which is ultimately owned by Waterland Private Equity, handed themselves a 43 per cent pay rise in 2024 to hit £885,000. Aspris said this was not awarded to Charles Coney, its chief executive, adding that his salary was 'significantly lower'. It refused to disclose the name of the director awarded the 'extreme high' pay rise for the year, but said they had left the company. The highest-paid director at Cavendish Education, which owns 11 private Send schools, saw their pay increase by 39 per cent last year to hit £393,000, according to its latest financial accounts. Horizon Care and Education, which owns around a dozen private specialist schools, boosted remuneration for their chief director to £290,200 in 2024 – a rise of 22 per cent compared to the year before. The money, paid through parent company Range Topco, excluded around £11,000 in pension contributions. Since private Send schools get the majority of their income from local authorities, these salary rises are likely to be taxpayer-funded. Lucrative business opportunity The Telegraph has seen evidence that investors are now being advised that private Send education poses a lucrative business opportunity – and one subject to less scrutiny than independent children's care. A 2024 market report by Mansfield Advisors, a consulting firm specialising in healthcare, social care and education, analysed the 'children's services market and the opportunities it presents for investors'. It said: 'While the independent children's care sector has been subject to high scrutiny, this is not likely to have a significant impact on providers in the special education sector. 'It is clear the increase in demand is outstripping the growth in supply, providing a clear opportunity for investors to meet this gap. 'Investing in the specialist education sector not only offers some shielding from wider economic downturns, but also the potential for good return through the robust demand increases for those with an appetite to look beyond the perceived risks.' The report added that it expected local authority spending on private Send schools would continue to soar, but warned that 'it is unclear how Labour will respond' to concerns about the industry. Mansfield Advisors highlighted high sale prices attached to many chains that have been bought by private equity, with sovereign wealth funds now among those pouring money into the sector. The Abu Dhabi government owns the Witherslack Group, where turnover rose by a fifth last year to reach more than £208m. Witherslack was bought in 2021 by Mubadala Capital, an asset management arm of Abu Dhabi's sovereign wealth fund. It has more than tripled the number of pupil places at its private Send schools to over 2,150 since 2017 and plans to open further schools in the coming months. Witherslack Aggregator, the holding company that owns Witherslack and all its Send schools, said in its latest financial accounts that 'the ultimate controlling party is the Government of the Emirate of Abu Dhabi'. Mubadala Investment Company, which owns Mubadala Capital, is chaired by Sheikh Mansour bin Zayed, an Emirati royal and the current vice president and deputy prime minister of the United Arab Emirates (UAE). Its six further board members are all Abu Dhabi royalty or UAE government officials, including Khaldoon Al-Mubarak, the chairman of Manchester City Football Club. The Telegraph has seen evidence of Mubadala officials visiting private Send schools in Britain to stress the company's footballing links. During a trip to a private Send school in Windsor in 2023, Mubadala representatives showed pupils a TV presentation about Manchester City FC, under the caption 'Examples of companies w e back' and alongside a picture of Sheikh Mansour bin Zayed. Witherslack said the representatives were from Mubadala Capital, not Mubadala Investment Company. Mubadala Capital as a subsidiary has no direct links to Manchester City FC, nor Sheikh Mansour bin Zayed. A spokesman said the visit was part of a workshop 'to broaden students' horizons and encourage students to consider careers by connecting their education to real-world opportunities'. Labour's reform plans Labour is considering introducing measures to restrict profits for companies running private special schools amid concerns that many Send children would fare just as well in conventional education. Ms Phillipson said in April: 'We are spending vast sums of money on a system where parents have lost confidence, where children are not getting what they deserve. [Reform] will involve more mainstream inclusion.' The Department for Education (DfE) said earlier this year that private Send schools are putting 'massive strain on local authority finances whilst failing children with Send and their families'. It added: 'Schools should be focused on ensuring children are supported to achieve and thrive, there is absolutely no place for excessive profit-making.' In August 2024, 87 per cent of private Send schools were judged either good or outstanding by Ofsted, compared to 90 per cent of state-run special schools, according to the DfE. The total taxpayer bill for private special schools reached £2.4bn in 2024, in addition to around £1.8bn spent on taxis to ferry children to and from them. The Government is concerned that soaring spending on specialist Send schools is pushing many local authorities to the brink of going bust and driving up the annual special-needs budget, which hit £11bn this year. Ministers recently announced a two-year reprieve before councils must balance the books on their bulging Send deficits following concerns an initial March 2026 deadline could have caused many to buckle. Parliament's Public Accounts Committee (PAC) said last month that local authority overspending on Send provision could reach between £2.9bn and £3.9bn per year by 2027/28. A Government white paper outlining reform of the sector is expected to be published in autumn. Ms Phillipson said: 'We're engaging with parents and experts to make sure that high-quality places are available across the country to meet all children's needs, and have already started driving change with our £740m capital investment to encourage councils to create more specialist places in local mainstream schools.' A spokesman for Outcomes First said: 'We are backed by a social impact investment fund which differs significantly from traditional private equity. The Rise Fund is driven by a core mandate to deliver positive and sustainable social impact alongside sustainable growth. 'Every decision is aligned with a long-term commitment to improving the lives of children with Send and ensuring that growth and reinvestment are purpose-driven and helping to meet rising demand while maintaining a high-quality service. 'As a responsible provider committed to positive social impact and sustainable growth, we reinvest any surplus into developing new services while improving quality and increasing capacity to ensure that more children with Send can access the support they need and our concern is what would happen to the thousands of children if organisations like ours were not able to scale and meet that demand.' A Witherslack spokesman said the company was 'the UK's leading education provider for neurodiverse young people, with the highest proportion of outstanding schools in the sector'. They added: 'The group offers exceptionally high-quality schools for pupils whose complex needs, and often challenging behaviour, cannot be met in maintained special or mainstream schools. 'Witherslack Group is proud to make a life-time commitment to helping young people find employment through its sector leading futures programme.' A spokesman for Horizon Education said: 'We are proud to support hundreds of children and young people with Send across the country, helping them to thrive through tailored, therapeutic education they may not otherwise receive. 'The vast majority of our services are rated good or outstanding by Ofsted, reflecting our commitment to high-quality provision. We are constantly striving to improve standards across all our settings. 'We recognise the pressures Local Authorities are under and are actively engaging with stakeholders across the country, including local authorities, Members of Parliament, and the Department for Education to ensure that funding is sustainable and fair for everyone, and that those pupils who require support the most have access to it.' A spokesman for Aspris said: 'We tailor care and education to meet the diverse needs of children and young people ensuring they always receive the right support at the right time in the right setting. 'We are proud of the proven positive difference we make in the lives of children and families. This is why our work often involves highly specialist, personalised care and support – which, understandably, sometimes brings additional costs.'
Medical News Today
36 minutes ago
- Medical News Today
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The Independent
an hour ago
- The Independent
Medics issue patient safety warning over union's approach to strikes
Top medics have urged the British Medical Association (BMA) to suspend its guidance advising doctors not to disclose strike plans to employers. The Academy of Medical Royal Colleges said that withholding this information risks patient safety as it makes it extremely difficult for health service leaders to maintain adequate patient care. Resident doctors are set to begin a five-day strike on Friday after pay talks with the government broke down, with the BMA seeking a 29 per cent pay rise. Hospital leaders anticipate having to cancel some operations and appointments, despite NHS England 's mandate to continue routine care, with one A&E in Cheltenham considering reducing services. The health secretary, Wes Streeting, described the strike action as 'completely unjustified', while the BMA argues the government's pay offer is insufficient.
