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.'
Try Our AI Features
Explore what Daily8 AI can do for you:
Comments
No comments yet...
Related Articles
Daily Mail
21 minutes ago
- Daily Mail
Model, 44, filmed parading in fantasy body paint at festival after falsely claiming NHS blunder left her in a wheelchair in £3m compensation claim
A model who claimed she had been left in a wheelchair because of an NHS blunder was filmed posing in fantasy body paint ahead of her £3m compensation claim. Kae Burnell-Chambers, 44, insisted she struggled to walk, get out of a car and dress herself because of nerve damage caused by delayed diagnosis of her condition. But social media videos from the Kustom Culture Blast Off festival painted a different picture as they showed Ms Burnell-Chambers was in fact mobile to the extent she could parade around as a fantasy warrior along with other body paint models. The video was filmed months before Ms Burnell-Chambers launched her multimillion-pound damages bid over delayed diagnosis of her cauda equina syndrome - a condition involving damage to nerves at the end of the spinal cord. Whilst the condition was genuine, the 44-year-old admitted exaggerating her symptoms in light of the footage showing no signs of her having difficulty getting around. The model now faces a potential jail sentence after Judge Jonathan Glasson KC found her guilty of contempt of court, as she admitted she had 'misrepresented' her symptoms during her claim. Cauda equina syndrome is a condition that occurs when the bundle of nerves below the end of the spinal cord, known as the cauda equina, is damaged. Signs and symptoms include low back pain, numbness and pain that radiates down the leg, but early diagnosis and treatment can lead to long term effects being much reduced. Sadie Crapper, barrister for Northern Lincolnshire And Goole NHS Foundation Trust, told the court that after NHS doctors missed early signs of the condition in 2016, Ms Burnell-Chambers, from Lincolnshire, a fine art graduate specialising in body painting, launched a bid for damages in 2019. Ms Burnell-Chambers was said to have attended medico-legal appointments where she complained of 'a whole array of disabilities', and said she needed help to dress and to get out of the car. The barrister explained that when she went to see a doctor she had 'displayed a laboured gait and used a stick'. However, Ms Burnell-Chambers went on to drop her claim in 2022 after social media videos and surveillance footage showed the picture of her disabilities she had been presenting to support her claim was 'fundamentally dishonest'. Ms Crapper said: '[Ms Burnell-Chambers] contended that she was significantly disabled by reason of the consequences of the delayed diagnosis of a second episode of cauda equina that she, for example, walked only with a stick and to a maximum of 100 in consequence thereof required significant levels of care, aids and equipment, including mobility scooter and wheelchair, boot hoist and Motability vehicle, single level accommodation etc.' The barrister added that 'following disclosure of surveillance evidence and social media material in the clinical negligence claim, she served a notice of discontinuance'. One of the videos was filmed the same morning Ms Burnell-Chambers saw the medico-legal expert displaying high levels of disability, though the film showed her 'at a petrol station with her mum walking with no problem'. A major element of the NHS case was based on a series of social media videos showing Ms Burnell-Chambers working as a bodypaint artist and model at a series of conventions and festivals around the UK. One particular video from the Kustom Kulture Blast Off in August 2019 'shows her having her body extensively painted and then parading in a show where she walks freely and dances without need for a walking aid', the barrister said. Ms Crapper added: 'By no later than 2017, she had recovered well enough to make a return to body painting. 'What you see in these videos is somebody who goes to conventions around the country. 'She's seen to walk without a mobility aid, crouch and converse about the work she's doing freely and without any sign of pain. 'The person seen on the videos is markedly different from the person seen in the medico legal documents and her witness statement. 'She has at all times known she participated in these conventions, undertook this painting and modelling, and could walk as she did on the footage now available.' Ms Crapper explained it was the NHS Trust's case that Ms Burnell-Chambers had 'fraudulently exaggerated her symptoms for the purposes of her clinical negligence claim'. She said: '[Ms Burnell-Chambers] now admits that she is in contempt of court and accepts that the custody threshold has been crossed in respect of her wrongdoing.' The court heard Ms Burnell-Chambers admitted her condition varies and her mobility is almost normal on good days, and that she had been exaggerating when she saw the medico legal expert doctor. 'She admitted she had been fundamentally dishonest,'' but nevertheless has real 'ongoing disabilities', her barrister Ben Bradley KC told the court. The judge, giving his ruling, said she had signed an admission that she had 'deceived' the examining doctors 'and deliberately changed my presentation' and that in doing so had 'deliberately interfered with the administration of justice'. In her admission statement, she said her mobility is near normal 'on good days' but 'on bad days' she considers herself to be disabled. On seeing some experts on the claim, she deliberately attempted to demonstrate what she perceived her function was at its worst, without telling the experts that was what she was doing, it was heard. 'I know it was wrong to misrepresent my presentation whilst making a civil claim. I accept that I deserve to be punished as a result,' she added. At the end of a half-day hearing, the judge concluded: 'I find the defendant guilty of contempt of court on the basis of her admissions.' He went on to grant permission for contempt proceedings to be discontinued against Ms Burnell-Chambers' mother, Lynne Clifford, on the basis of a statement she made supporting her daughter's claim. Ms Burnell-Chambers will now return to court to be sentenced in October. The maximum term for contempt of court is two years' imprisonment.
The Sun
22 minutes ago
- The Sun
Grandad, 63, choked to death on chunk of steak after medic arrived with broken defibrillator
THE family of a man who tragically died choking on a steak dinner have raised concerns over a volunteer medic sent to save his life. They claim the medic responded to the urgent emergency call with faulty equipment. Paul Barnes, 63, tragically passed away at the Norfolk and Norwich University Hospital in March after choking on a steak a week earlier. He was hailed as a "legend" by locals in East Harling where he was living with his daughter-in-law and three-year-old granddaughter. His family have now raised concerns after the first person to arrive at the scene of Paul's choking episode was a community first responder with a broken defibrillator. An inquest into Paul's tragic death has since heard that the family were enjoying a "steak night" a tradition on Wednesdays, when the horror unfolded. The court heard Paul was found unresponsive and "grey in the face" after choking on his steak. Emergency services were immediately scrambled and found a two-inch long piece of steak lodged deep in his throat. At this point Paul had gone into cardiac arrest, he was rushed to hospital but was placed into palliative care. The first on scene, a community responder from the Norfolk Accident and Rescue Service charity, arrived with a broken defibrillator. The responder then asked a member of Paul's family to drive to the nearest fire station to ask to borrow theirs, which he promptly did. It then emerged that Paul did not have a shockable heart rhythm, which meant the equipment was not required. The inquest into his death concluded that he had died an accidental death. 1
The Sun
22 minutes ago
- The Sun
‘Anti-vax' Cambridge graduate, 23, died after refusing chemotherapy for ‘treatable' cancer
PALOMA Shemirani, who died after refusing treatment for her "treatable" cancer, told a court she was "anti-vax", an inquest has heard. The 23-year-old University of Cambridge graduate said she always turned to her mother, conspiracy theorist Kate Shemirani, first for health advice. 6 The young woman was diagnosed with non-Hodgkin lymphoma in 2023 - a type of blood cancer which starts in the lymph nodes. At the time, doctors told Paloma she had an 80 per cent chance of recovery with chemotherapy. However, she declined the treatment and suffered a fatal heart attack just months later, caused by her tumour at the Royal Sussex County Hospital (RSCH) on 24 July last year. Kate, or "Kay" Shemirani, rose to prominence on social media while sharing Covid-19 conspiracy theories, the inquest at Oakwood House in Maidstone, Kent, heard previously. In written statements submitted to the family division of the High Court in Spring 2024, Paloma said she declined chemotherapy partly because of her "background in natural healing", the inquest heard on Monday. The proceedings, which involved the Maidstone and Tunbridge Wells NHS Trust, were on the appropriateness of her care. Paloma said she was "delighted" with her alternative treatment and "sure" she would "make a full recovery" if left to continue it, the inquest was told. She also claimed her human rights had been violated by NHS practitioners in the statements, which were read by lawyer Alison Hewitt. Kay, who attended the inquest via video link, weeped and held pictures of Paloma to the camera as they were read. It said: "I am far from being a vulnerable young adult. Son of anti-vax nurse being probed by cops for comparing NHS medics to Nazis slams 'arrogant' mum "Apart from becoming independent after I moved to Cambridge for university, I have practised the same principles that I grew up with. "I have always been extremely health conscious: sticking to all-organic produce, I prepare all my own meals and I absolutely do not drink or cook with tap water. "I have never taken drugs, despite pressure to, and I rarely drink alcohol. "If I became ill, I've always turned to my mum first for advice as she is a trained nurse and qualified nutritionist. "Practically fanatical about my health, my close friends know me as a staunch advocate for all proven natural healing". She also described her mother as "an extremely forceful advocate for natural health" who is "misquoted" by people claiming "those natural solutions are conspiratorial". 6 6 6 Kay was struck off as a nurse in 2021, with a Nursing and Midwifery Council (NMC) committee finding that she had spread Covid-19 misinformation that "put the public at a significant risk of harm", the inquest heard previously. Paloma's brothers, Gabriel and Sebastian, claim she was influenced by the beliefs of their mother. Kay blames doctors for her daughter's death. Another statement in Paloma's name added "my friends know me as a staunch advocate of the Gerson therapy" and that she is "anti-vax". She said she had been using Gerson therapy as one mode of treatment on the advice of her mother's ex-fiance, Doctor Patrick Villers, and that at 15 years old she spent three weeks in his camp in Mexico where it was practised. Gerson therapy involves a strict organic vegetarian diet and enemas and has been used in cancer treatment. Though Cancer Research UK says that there is no scientific evidence it can be used as a treatment for cancer. Fears of infertility Her GP was also monitoring her blood and progress, she said. The former Cambridge student went on to deny having the disease and said "I was not diagnosed with non-Hodgkin's lymphoma... I have never had a shadow on my lung, this is absurd fantasy, no proof". She described the diagnosis as "suspected and unconfirmed", and said a "differential diagnosis" only meant cancer could not be ruled out. Paloma understood that she had a one in five chance of surviving the commonplace R-CHOP treatment that was offered, and feared it would likely make her infertile, the inquest heard. "I do not want to undergo such a harsh treatment that could even kill me when there is a possibility this is not cancer", she said. The High Court statement alleged multiple violations of human rights in her care, the inquest heard, including Articles 3, 6 and 8 and possibly Articles 1, 5 and 12. "I am so shocked, as are others assisting me, especially my mother, that this could take place today", the statement said. "These were put in place forever to prevent what Dr Mengele did in the second world war. How could this happen today?", it continued. Notorious Nazi doctor Josef Mengele performed experiments on his victims in Auschwitz. 6 The patient said symptoms she presented in hospital with - including a swollen face, excruciating chest pain being unable to move her arm - had subsided. Questions designed to waste time Coroner Catherine Wood reprimanded Kay multiple times during proceedings. Kay cross-examined Dr Amit Goel, a consultant histopathologist at Maidstone Hospital who carried out a biopsy. She repeatedly put to him that insufficient tissue was taken to carry out a FISH test that could rule out other diseases and alter Paloma's treatment plan. The doctor denied that this would have influenced Paloma's care multiple times. The coroner told Kay the inquest is trying to look at "how Paloma came about her death" but "you are apparently trying to get information which is incorrect, factually incorrect, in the statements you are making". "I think your questions are just designed to take up time and delay matters by the way you're asking them repeatedly," she added. The mother accused participants of mis-pronouncing her name. This eventually led Ms Wood to say: "I am going to rise, for Ms Shemirani to reflect on her behaviour in court, this is unacceptable. "Let's have a pause for tempers to die down because you are clearly becoming over-fixated on a detail." At the opening of the hearing Kay made an application for a lawyer to recuse herself. To recuse means to step down or be removed from a case due to a possible conflict of interest, bias, or other valid reason. The coroner rejected the application and said had seen the "hundreds of emails that have been sent in" and that "you have requested that everybody recuse themselves at various times", including the coroner herself. The inquest continues. What is Gerson therapy? Gerson therapy is an alternative cancer treatment. It involves a strict plant-based diet, daily coffee enemas, and high doses of supplements and juices. It was developed in the 1920s by Dr Max Gerson, who claimed it could detoxify the body and boost the immune system to fight disease. However, there is no scientific evidence that it can treat cancer or its symptoms, according to Cancer Research UK. As well as this, the side effects can be extreme and harmful. This is because coffee enemas remove a lot of potassium from your body which can cause infections, dehydration, fits, constipation, heart issues, lung problems and even death. Other side effects include loss of appetite, diarrhoea and sickness, abdominal cramps, aching, fever and sweating, cold sores, dizziness and weakness.
