Published2 hours agoShareclose panelShare pageCopy linkAbout sharingImage source, Ross CunliffeBy Alex PopeBBC News, BedfordshireA man has hailed the release of a cancer drug on the NHS, revealing it has given him an improved quality of life.Ross Cunliffe, 65, from Woburn, Bedfordshire, was told in 2013 he had the rare condition, AL amyloidosis.He secured daratumumab privately in 2019, and said making it available on the NHS was “the right thing” to do.The National Institute for Health and Care Excellence (Nice) said it would benefit about 450 people a year.Image source, Ross CunliffeMr Cunliffe had campaigned with blood cancer charity Myeloma UK for the drug to be made available for everyone.The account director said being able to access daratumumab made him feel “guilty”, but as soon as he took it made a “remarkable difference to my condition”. “I have tried to help raise the message about daratumumab simply by doing articles and talking to people and writing to my MP, because of the principle of the unfairness that I could get these drugs,” he said.”I’m a great believer in there’s always a right thing and a wrong thing [to do]. Sometimes it’s not easy to do the right thing but… in this instance, the right thing has been done.”Image source, Ross CunliffeThe keen athlete, who also has stage four lung cancer and the blood cancer myeloma, said that while he was on the drug for two years it “suppressed my condition” and he was “well for pretty much that whole time”.It allowed him to snowboard, cycle – and spend time with his children and grandchildren, he said. What is AL amyloidosis?”Amyloidosis” is a general term used for a group of conditions where an abnormal protein, called amyloid, accumulates in the tissuesAL amyloidosis is a rare condition that is caused by abnormal plasma cells in the bone marrowBetween 500 and 600 patients are diagnosed in the UK each yearIt can be treated – but it is a relapsing-remitting condition15% of myeloma patients also have AL amyloidosisSource: Myeloma UKImage source, Ross CunliffeNice said the drug cost £4,320 for a 1,800mg per 15ml vial and, along with bortezomib, cyclophosphamide and dexamethasone, was recommended as an option for treating newly diagnosed AL amyloidosis in adults.Dr Sophie Castell, chief executive of Myeloma UK, said it was “tremendous news”. She added: “This new drug combination is a game-changer and we know it can have a significant impact on people’s quality of life and remission times.”Mr Cunliffe said: “The nature of my condition is the drugs I’m on will eventually stop working. I’m incurable, but if it had not been for daratumumab I wouldn’t have survived those years. “I’ve been lucky enough to do a thousand things with my life. “It’s been full of adventure and the drug allowed me to feel well enough to start doing some of those things again.”Follow East of England news on Facebook, Instagram and X. Got a story? Email eastofenglandnews@bbc.co.uk or WhatsApp 0800 169 1830More on this storyWoman in remission urges others to try drug trialsPublished14 August 2023Man almost paralysed by undiagnosed blood cancerPublished26 June 2023Man given year to live cancer-free after drug trialPublished30 December 2022Related Internet LinksMyeloma UKNational Institute for Health and Care ExcellenceThe BBC is not responsible for the content of external sites.

Published1 day agoShareclose panelShare pageCopy linkAbout sharingImage source, GoogleBy Alex PopeBBC News, BedfordshireA coroner has criticised a doctors’ surgery over the death of a woman who had been prescribed opioid drugs for about 14 years.Joy Ebanks, 59, died from oxycodone toxicity in May last year.Sean Cummings, the assistant coroner for Bedfordshire and Luton, said there was “no evidence” to suggest a plan was formed by Kirby Road Surgery in Dunstable to reduce the dosages.The surgery said it would put together an action plan.In his prevention of future deaths report, Dr Cummings said Mrs Ebanks was taking oxycodone and pregabalin as pain treatment and her primary cause of death was “oxycodone toxicity enhanced by pregabalin intake”.Oxycodone is an opioid painkiller used to treat severe pain. Long-term use is associated with physical and mental health issues, heart conditions and accidental overdoses.Fourth wave of fentanyl crisis hits every corner of USTwo million on antidepressants for five yearsPanorama: The Antidepressant StoryMrs Ebanks suffered from fibromyalgia, arthritis, agoraphobia and was diagnosed with depression, Dr Cummings said.She was prescribed venlafaxine and quetiapine – both used to treat mental health conditions – and took cannabis.The patient lived alone, had not engaged with support and had “been self-neglecting”, the report added.She was found unresponsive by her care worker on 24 May 2023 and was pronounced dead at the scene. ‘Poor communication’Dr Cummings said Mrs Ebanks had been prescribed “opiates since at least 2009″.Medication reviews were largely done by telephone because of her agoraphobia and dislike of people coming to her home, he wrote.”There was evidence of poor communications between the agencies providing her with different aspects of her care,” he said.”There was no evidence of any attempt to review the prescriptions of two dependency forming drugs with a view to reducing the dose over time. The opioid prescription was high.”The report said there was “a risk that future deaths could occur unless action is taken”.The surgery said it was saddened by her death and added: “We are currently considering the contents of his report and will reply with an action plan to address the matters raised.”A copy of the report was also sent to the East London NHS Foundation Trust which “may find it useful or of interest”, Dr Cummings said.Follow East of England news on Facebook, Instagram and X. Got a story? Email eastofenglandnews@bbc.co.uk or WhatsApp 0800 169 1830More on this story’We had to investigate our autistic son’s death’Published7 days agoTwo million on antidepressants for five yearsPublished19 June 2023Coroner calls for action after policeman’s suicidePublished26 January 2023Related Internet LinksCoroner ServiceKirby Road SurgeryThe BBC is not responsible for the content of external sites.