A morte assistida é complementar aos cuidados paliativos, diz advogada
Pulmonary_fibrosis_Woman_frightened_over_delays_to_vital_oxygen.txt
Delays in vital oxygen deliveries 'frightening' 3 days agoShareSaveNaomi ClarkeBBC News NIShareSaveTom McMillanUna McMillan has had to miss out on jogos mexico rexevents when her oxygen has not been deliveredA woman who requires oxygen cylinders to stay alive has said it's frightening that her supplies are frequently not delivered on time. Una McMillan, from Ballycastle, County Antrim, suffers from pulmonary fibrosis and has lost four family members to the disease.She recounted being told one Friday afternoon that she would not be receiving her expected oxygen delivery, leaving her with just one and a half hours of supply for over the weekend. "I'm very concerned, it's actually quite frightening, I get quite uptight," she said.Mrs McMillan's husband and carer Tom, who is chairman of Pulmonary Fibrosis NI, said that "about every third delivery we would have a non-delivery and perhaps then delivery the next day".He said on one occasion the couple waited for five days for her home oxygen supplies to be replenished.Speaking to Good Morning Ulster, his wife gave an example of Friday, 1 August, when she was due an oxygen delivery and was told shortly after 16:00 BST that it wasn't going to come."My previous delivery of oxygen had been on Wednesday 30th July, so by Friday I had about an hour and a half of oxygen left," she said."I was very panicky and worried about how I was going to cope because I didn't have any oxygen."I was OK while I was sitting, but on movement my oxygen levels drop."Mrs McMillan had been due to see her grandson who was visiting from Manchester that weekend and who she had not seen for 18 months.A family dinner arranged at a nearby restaurant could not go ahead. "It was a big deal for all of us, but all of that had to be cancelled," she said.Tom McMillanTom McMillan said that "about every third delivery we would have a non-delivery"Mrs McMillan's husband Tom raised the issues around oxygen supply with Health Minister Mike Nesbitt in August but said he has yet to receive a response to his questions on what is affecting the supply. He met with assembly members last week to escalate the issue.A spokesperson for the British Oxygen Company (BOC), which is contracted by the Department of Health (DoH) to provide the oxygen, said the health, safety and well-being of patients were its "top priorities". The department said that overall the BOC contract is "working well for the majority of patients". 'It's so vital'More than 6,000 patients in Northern Ireland are on home oxygen, according to the department.This is due to a range of conditions including cancer, asthma, long Covid and pulmonary fibrosis, and patients are prescribed oxygen through a specialist nurse. The BOC is then contracted by the department to provide the oxygen, which is delivered to patients' homes. However, oxygen can only be ordered once the existing supply runs down and if the new supply does not come on time, the patient will not have oxygen access."When you're not getting the oxygen you're starving your heart, your brain, you're leading to heart attacks, problems with your liver, kidneys, everything else within your body," Mr McMillan said."It's so vital to not just their quality of life, their quantity of life as well, it will help them to live longer."Not having their oxygen does not allow them to do many, many things... if they don't have their oxygen they can't function like you and me."Tom McMillanOn one occasion, Una's oxygen was five days lateHe said the department should "look at the contract they have with the BOC", talk to those affected and find out what the root cause of the problem is."Is it because they don't have enough oxygen? My answer to that is that's probably not correct because if I rang BOC and said: 'I've no oxygen, I need it urgently' - they'd probably say to me: 'Will you come into Belfast with your empties and we'll fill them.'"So it's not a case of not having oxygen, I assume it's a case of not having somebody to deliver it."'Address concerns promptly'A spokesperson for the BOC said it was "unable to comment on individual cases due to confidentiality".The spokesperson added that "if any service-related issues arise, BOC has established processes in place to investigate thoroughly and collaborate with all relevant groups to address concerns promptly"."We remain committed to continually improving the services we provide." The Department of Health said: "At present, we are advised that stock levels of ambulatory cylinders are sitting at 104%."They added that officials are in communication with BOC regarding issues raised by some patients.More on this storyLung condition with no cure on rise in NINI HealthNorthern IrelandNorthern Ireland Assembly
