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
25 minutes ago
- Daily Mail
Huge breast cancer breakthrough as scientists discover key way to prevent deadly disease
Scientists have discovered how breast cancer spreads to other parts of the body—and it could revolutionise how the disease is treated in its earlier stages. Scottish researchers discovered that cancer changes the metabolism—the way cells make and use energy—of specific immune cells. They found that they release a certain sort of protein, called uracil, which can be used as a 'scaffold' by cancerous cells, allowing them to grow on other organs. Scientists were able to block the uracil-powered scaffold from forming in mice. This restored the ability of the creatures' immune systems to kill secondary cancer cells, and stop the cancer from spreading. The scientists achieved this by blocking an enzyme called uridine phosphorylase-1 (UPP1), which produces uracil. They hope that detecting uracil in the blood may help spot early signs the cancer spreading—and blocking UPP1 with drugs could stop the spread before it even starts. The findings of the study, which was carried out in the labs of Professor Jim Norman and Professor Karen Blyth, were published in the Embo Reports journal. Lead author of the study, Dr Cassie Clarke, said: 'This study represents a major shift in how we think about preventing the spread of cancer. 'By targeting these metabolic changes as early as possible we could stop the cancer progressing and save lives.' Meanwhile, Dr Catherine Elliot, director of research at Cancer Research UK, said: 'Metastasis—when cancer spreads—is a major factor in breast cancer becoming harder to treat, especially if the cancer returns months or even many years later. 'This discovery gives us new hope for detecting and stopping metastasis early and ensuring people have many more years with their families and loved ones.' The research may also help stop the spread of other cancers to other parts of the body, too added Simon Vincent, chief scientific officer at Breast Cancer Now. 'Now we need more research to see if this new insight can be turned into new drugs that stop secondary breast cancer, and potentially other secondary cancers,' he said. The team of researchers at from the Cancer Research UK Institute and University of Glasgow are now testing the ability of drugs to prevent cancer occurring. It comes amid an alarming prediction earlier this year that breast cancer deaths in the UK will soar by more than 40 per cent by 2050. By the same year, globally, another study estimated there will be 3.2million new cases and 1.1million breast-related deaths per year if current trends continue. The disease is far more prevalent in those over 50, which is the age women typically experience the menopause. It is the most common type of cancer in the UK, taking the lives of around 11,500 Britons and 42,000 Americans each year. Early signs of the disease are a lump in the breast, swelling or lump in the armpit, change in size or shape of breasts, discharge of fluid from the nipple. Others include dimpling, a rash or redness on skin, as well as crusting, scaly or itchy skin on the nipple. Despite years of pleas from cancer charities, more than a third of women in the UK still do not regularly assess their breasts. However, it should be part of your monthly routine, so you can notice any unusual changes, charity CoppaFeel previously said. You can check in the shower, when you are lying down in bed or in the mirror before you get dressed. Because breast tissue isn't just found in your boobs, it's also important that men and women check the tissue all the way to their collarbone and underneath their armpit. There is no right or wrong way to check your breasts, as long as you know how your breasts usually look and feel, says the NHS. Breast cancer is one of the most common cancers in the world and affects more than two MILLION women a year Breast cancer is one of the most common cancers in the world. Each year in the UK there are more than 55,000 new cases, and the disease claims the lives of 11,500 women. In the US, it strikes 266,000 each year and kills 40,000. But what causes it and how can it be treated? What is breast cancer? It comes from a cancerous cell which develops in the lining of a duct or lobule in one of the breasts. When the breast cancer has spread into surrounding tissue it is called 'invasive'. Some people are diagnosed with 'carcinoma in situ', where no cancer cells have grown beyond the duct or lobule. Most cases develop in those over the age of 50 but younger women are sometimes affected. Breast cancer can develop in men, though this is rare. Staging indicates how big the cancer is and whether it has spread. Stage 1 is the earliest stage and stage 4 means the cancer has spread to another part of the body. The cancerous cells are graded from low, which means a slow growth, to high, which is fast-growing. High-grade cancers are more likely to come back after they have first been treated. What causes breast cancer? A cancerous tumour starts from one abnormal cell. The exact reason why a cell becomes cancerous is unclear. It is thought that something damages or alters certain genes in the cell. This makes the cell abnormal and multiply 'out of control'. Although breast cancer can develop for no apparent reason, there are some risk factors that can increase the chance, such as genetics. What are the symptoms of breast cancer? The usual first symptom is a painless lump in the breast, although most are not cancerous and are fluid filled cysts, which are benign. The first place that breast cancer usually spreads to is the lymph nodes in the armpit. If this occurs you will develop a swelling or lump in an armpit. How is breast cancer diagnosed? Initial assessment: A doctor examines the breasts and armpits. They may do tests such as a mammography, a special x-ray of the breast tissue which can indicate the possibility of tumours. Biopsy: A biopsy is when a small sample of tissue is removed from a part of the body. The sample is then examined under a microscope to look for abnormal cells. The sample can confirm or rule out cancer. If you are confirmed to have breast cancer, further tests may be needed to assess if it has spread. For example, blood tests, an ultrasound scan of the liver or a chest X-ray. How is breast cancer treated? Treatment options which may be considered include surgery, chemotherapy, radiotherapy and hormone treatment. Often a combination of two or more of these treatments are used. Surgery: Breast-conserving surgery or the removal of the affected breast depending on the size of the tumour. Radiotherapy: A treatment which uses high energy beams of radiation focused on cancerous tissue. This kills cancer cells, or stops them from multiplying. It is mainly used in addition to surgery. Chemotherapy: A treatment of cancer by using anti-cancer drugs which kill cancer cells, or stop them from multiplying. Hormone treatments: Some types of breast cancer are affected by the 'female' hormone oestrogen, which can stimulate the cancer cells to divide and multiply. Treatments which reduce the level of these hormones, or prevent them from working, are commonly used in people with breast cancer. How successful is treatment? The outlook is best in those who are diagnosed when the cancer is still small, and has not spread. Surgical removal of a tumour in an early stage may then give a good chance of cure. The routine mammography offered to women between the ages of 50 and 71 means more breast cancers are being diagnosed and treated at an early stage. For more information visit or call its free helpline on 0808 800 6000 But one of the most popular methods online involves using the pads of your fingers. Examining your entire breast and armpit area, simply, rub and feel from top to bottom of the breast. You should also feel in semi-circles and in a circular motion around your breast tissue to feel for any abnormalities, according to a guide shared in a blog post by the University of Nottingham. Then look in the mirror for any visual lumps, skin texture and changes and changes in nipple shape or abnormal discharge. If you spot any changes, you should get it checked out by your GP. Women aged between 50 and 70 should also be attending routine breast cancer screenings.
BBC News
25 minutes ago
- BBC News
Date set for 24-hour stroke treatment rollout at Royal Preston
A potentially life-saving stroke treatment will be available around the clock in Lancashire by early next year, according to the region's health board. The Royal Preston Hospital already offers the procedure, known as a thrombectomy, to suitable patients in Lancashire and South Cumbira – but only between 08:00 and 18:00 BST. The hospital was set to start offering the procedure at all hours of the day by September 2024, but the plan had to be pushed back because of difficulties recruiting staff. A meeting of the NHS Lancashire and South Cumbria Integrated Care Board (ICB) heard that the treatment would be offered 24 hours a day from 1 February 2026 at the latest. A thrombectomy is only utilised to treat strokes caused by a blood clot in a large artery in the brain. The procedure involves surgically removing the clot, but it has to be done soon after a stroke occurs to be Christopher Long recently warned that limited access to the procedure posed a life-threatening risk to patients in Lancashire and South Cumbria, according to the Local Democracy Reporting Service (LDRS). He issued the warning at an inquest earlier this year into the death of Michelle Mason, 45, who died at the Royal Lancaster Infirmary in June 2024 after suffering a treatment was "considered" in her case, but would not have been available at the time she needed it, the coroner heard. The ICB's acting medical director, Dr Andy Knox, told the meeting the hospital had now recruited enough interventional radiologists "to be able to fulfil the rota requirements" of 24-hour he said more time was needed to bring in a new consultant. Dr Knox said the ICB was pushing for the Lancashire Teaching Hospitals NHS Foundation Trust, which runs the Royal Preston Hospital, to roll out the 24-hour programme by October. However, he acknowledged it would place the hospital under additional pressure, adding: "We know that things will be in place by 1st February."He said co-operation had improved with other trusts within north-west England meaning patients from Lancashire and South Cumbria could be transferred elsewhere for a thrombectomy when required in the meantime. The LDRS has approached the trust for comment. Listen to the best of BBC Radio Lancashire on Sounds and follow BBC Lancashire on Facebook, X and Instagram. You can also send story ideas via Whatsapp to 0808 100 2230.
BBC News
an hour ago
- BBC News
German pharma firm signs deal worth up to $1bn with QUB spin out
A medical technology company founded by Queen's University academics has signed a licensing agreement with a major pharmaceutical firm which could ultimately be worth up to $1bn (£744.1m).Re-Vana Therapeutics, which was set up in 2016, develops products to improve the delivery of drugs for chronic eye diseases, increasing the quality of care for major benefit of its technology is that it reduces the number of eye injections patients require making them more likely to follow their Ingelheim, a German pharmaceutical firm, is licensing the drug delivery system to combine it with its eye medications. The German firm will take responsibility for regulatory approvals and global commercialization of products developed using the Re-Vana Ingelheim said the deal involves "upfront, development, regulatory and commercial milestone payments to Re-Vana, with total potential deal value exceeding $1bn for the initial three targets, in addition to royalty payments on net sales".Re-Vana was founded by Professor Raj Thakur and Professor David Jones with investors including Qubis, the commercialisation arm of Queen's company is now based in the US but still has its research base in O'Rourke, Re-Vana's Chief Executive Officer, said the collaboration with Boehringer Ingelheim is a "transformational moment".The deal has also been welcomed by NI Secretary of State Hillary Benn who said it "represents a huge vote of confidence in Northern Ireland's innovation and skills".
