Cancer care discontinued, donor lungs on hold and kidney dialysis cuts
No one could argue that care is needed for critically ill Covid-19 patients, but where are millions of patients with other serious health problems?
The release of hospital beds and the reassignment of medical personnel for coronavirus patients have led to the closure of outpatient clinics, canceled operations, delayed treatment assessments, and partial cessation of transplant services.
Health charities representing patients with severe long-term conditions say services for everything from mental health to kidney dialysis, cancer and progressive conditions such as heart failure are affected.
For example, the British Society For Heart Failure (BSH) says that services to the million heart failure patients in the UK are threatened because many specialist personnel have been transferred to assist in Covid departments.
“Of course, we understand why cardiac specialists and nurses are being transferred to the front line,” said Carys Barton, chair of the BSH Nurses’ Forum and a nursing consultant for heart failure at Imperial College Healthcare Trust in London. “However, we also need to ensure that all measures minimize long-term damage to patients.”
Dr. Rod Hughes, a rheumatologist counselor at St. Peter’s Hospital in Chertsey, Surrey, says patients are offered telephone consultations, but the redeployment of specialist personnel has almost brought the outpatient services to a halt. “The difficulty will be that when things open up again, there will be an overwhelming question,” he says.
“Figures from 2018/19 showed that 55,000 patients waited 18 weeks or more for hip or knee replacements in the UK – god knows what this figure will be after a three-month stop.”
But how is it for those whose treatment has been compromised? Here, five patients with devastating delays in their care – which can be life-threatening in some cases – tell their story.
KIDNEY DIALYSIS CUTBACKS
33-year-old Jack Fetherstonhaugh has undergone an hour’s dialysis
JACK FETHERSTONHAUGH, 33, an artist who also runs a holiday business, lives near Conwy, North Wales. He has had kidney dialysis since he developed kidney disease at the age of 21. He says:
Dialysis keeps me alive by taking on the role of my kidneys – separating waste and fluid from my body.
I usually travel 20 minutes every other day by car to the local kidney center of the NHS for a four-hour dialysis session. I would die without it.
But since the block, my dialysis has been reduced to three hours per session – which is already having a bad effect on my health.
I feel more tired than usual and feel dizzy and light-headed during the day, which means I have to sit down.
Blood test results last week revealed that my creatinine levels, a waste product of muscle function seen as a reliable indicator of kidney function, have risen from 500 to 900 since lockdown – and this is very worrying.
A few years ago I was on a different type of dialysis, and when it was not working properly, toxic chemicals built up in my body and caused serious muscle damage in my legs. I have been on the transplant list for a new kidney for four years, but I received a letter from my transplant center stating that they no longer do kidney transplants because of the pandemic.
It’s scary to think of what would happen if my condition got worse. I have few options.
EXPERT NOTE: Graham Lipkin, a consultant nephrologist at Queen Elizabeth Hospital, Birmingham, says dialysis has only decreased in certain centers for selected patients: ‘Shortening dialysis time is not perfect, but it is an appropriate treatment for a short period of time in selected patients.
“In the UK we have 65,000 patients with end-stage renal disease, 45 percent of whom are on dialysis. Between 20 and 30 percent of dialysis nurses are currently ill, shielded, or absent for other reasons, so the staff shortage has affected the services that some areas can provide.
“There is a small chance that some patients will experience complications they would not otherwise have developed if their dialysis had not diminished.”
CANCER CARE IS INCREASED
Duncan Mclean, 39, has had surgery to remove his smooth and prostate gland
DUNCAN MCLEAN, 39, a gas and heating engineer living in Stevenage, Herts, has had surgery with his partner and their four children to remove his bladder and prostate gland, postponed and other treatments have been discontinued. He says:
When I was diagnosed with aggressive bladder cancer nine months ago, I relied on the NHS to save my life. I have so much to live.
Initially, I had to have two surgeries to remove 27 tumors, then I received six doses of BCG therapy to reduce the growth of new tumors. But in the end I was told I needed surgery.
I had a radical cystectomy on May 1 to remove my bladder and prostate gland.
It was a major surgery where I would have a new bladder made from part of my gut, but I knew that if everything went well, I would leave that theater cancer-free.
Three weeks ago I received a letter that my surgery had been canceled due to the corona virus. It suddenly felt like a sword was hanging over my head and I haven’t been able to sleep since. In fact, I now have such a debilitating fear that I have been referred to the local mental health team.
My advisor told me that he will try to reschedule my surgery as soon as possible and told me not to worry. But how can I not? My cancer is advanced and without treatment it will spread quickly.
The tumors in my body are still growing quickly and once they enter the bladder wall, my chance of getting through this, even with surgery, is low. What makes this even worse is that the BCG treatment I received earlier to slow tumor growth has been discontinued.
BCG helps the immune system fight cancer, but being an immunosuppressant, some bladder cancer patients have been told it may make them more vulnerable to Covid-19.
Without this, many bladder cancer patients like me no longer have backup. Because of the coronavirus, we have missed life-saving surgeries and treatments that could give us more time.
EXPERT NOTE: Peter Johnson, National Clinical Director for Cancer at NHS England, says: “Given the significant risk coronavirus poses, especially for people with weakened immune systems, it may be safer in some cases to refuse or give cancer treatment and, as always, these decisions are rightly made by expert clinicians working with their patients. ‘
My therapy has been canceled
Emily Nuttall, 26, canceled her therapy for mental health problems
Emily Nuttall, 26, lives in St Peter Port, Guernsey, and has had several face-to-face therapies for mental health issues since 2017. She says:
I have had anorexia in the past, as well as anxiety and depression, and I have damaged myself. I’ve had three different therapies every week to help me cope which has made all the difference. Without them, I’m afraid I could end up in the hospital. I have cognitive behavioral therapy – which helps me think more positively – for an hour a week face-to-face and an hour with a psychologist. I go to a mindfulness group once a week. I have found the therapies very helpful.
But all face-to-face therapies have been suspended. Although my psychologist does a telephone consultation once a week, I don’t find it as helpful as seeing him in person. I fear the effect that the block has on my mental health.
EXPERT NOTE: Professor Wendy Burn, president of the Royal College of Psychiatrists, says, “NHS mental health care remains open, and if you need support, you should still seek help. If it is not possible to speak face-to-face, we recommend psychiatrists to try to support patients remotely. ‘
DELAY IN REVISION OF HEART FAILURE
Jill Wilson, 54, said her specialist counseling for heart failure has been delayed. She is a moderate case
JILL WILSON, 54, a market researcher, lives in Cheshire with daughter Anna, 15. She was diagnosed with heart failure last fall after developing shortness of breath, fatigue, and fluid retention. She says:
I had a letter from the hospital canceling my next day appointment, and I was worried for a few weeks wondering how I would know if my condition was getting worse and if my new medication was working.
The consultant called yesterday and said that due to the Covid-19 situation, I would not be seen by the hospital until June, but she said she would write to my doctor asking me to continue my medication.
I asked some questions, which was reassuring, but I don’t get an echocardiogram until June, which is the only way to know for sure if my medication is working.
Heart failure occurs when your heart becomes too weak to effectively pump blood around the body. My diagnosis came as a shock because there was no clear cause. An echocardiogram showed that my left ventricle, the left part of the heart responsible for pumping oxygenated blood through the body, was not working properly.
I am classified as a moderate case, but that can change quickly. I was on medication including beta blockers to slow the heart rate and diuretics to retain fluid; as well as eplerenone and ramipril for heart failure – and told to have follow-up every two months.
In February, doctors turned on the rampiril for a newer drug, Entresto, which lowers blood pressure and increases blood flow. Heart failure makes my body feel full of lead – everything feels like an enormous effort.
I was about to start with specialist counseling for heart failure, but that has also been postponed.
EXPERT NOTE: Carys Barton, a nurse consultant for heart failure at the Imperial College Health Care Trust in London, says, ‘Nurses from the heart failure community can keep people out of the hospital by closely monitoring their symptoms and responding if their symptoms worsen with medication to adjust.
“It is vital that patients maintain regular contact with their medical team to report any worsening of symptoms. Heart failure is a condition that should be watched closely and anyone concerned about his condition should get in touch. ‘
CHANCE OF DONOR LUNGS STATE
Laura Beattie, 31, who suffers from cystic fibrosis has been told that the only available transplants are where it’s a matter of life and death
LAURA BEATTIE, 31, lives in Stretford, Greater Manchester, with her parents and sister Rachel, 24, with whom she runs a fashion business. Laura has cystic fibrosis and is waiting for a lung transplant. She says:
I’ve been told to pack a bag for two years, so I’m ready day and night when the call comes to tell me that donor lungs are available.
I can’t wait because my lungs are so damaged that even drying my hair is breathless. I have been told that the only transplants that are currently being done are those where it is a matter of life or death within days.
I was diagnosed with four-month-old cystic fibrosis (CF). The condition means that mucus builds up in my lungs and stomach and makes breathing and digestion more difficult. Many people with CF eventually need a transplant because the mucus leads to repeated chest infections, which means our lung function decreases.
My lung function is only 23 percent [normal is more than 80 per cent] and I often can’t walk upstairs without getting out of breath and needing oxygen from a tank that I have to take with me at home. I also need oxygen at night through a mask.
Getting on the list for donor lungs in 2018 was a shock.
They normally do tests every three months, so all the information is ready when I am called for a transplant. My last was in December. Last month I received a letter saying that my next appointment, which should have been in March, would be pushed back to August due to coronavirus.
It is very disappointing. As a vulnerable patient, I don’t leave the house at all and live and eat in a separate room from my family, which makes me feel lonely.
I have monthly appointments with my cystic fibrosis doctors over the phone, but they cannot measure my lung function remotely. I probably won’t get a call soon unless I feel very unwell. And I really don’t want that.
EXPERT NOTE: Professor John Forsythe, medical director for organ donation at NHS Blood and Transplant, says, “Some transplant units have made the difficult decision to temporarily close their transplant programs to support the NHS in the treatment of Covid-19 patients and other patients. who need intensive care.
“Life-saving transplants will continue as long as staff consider it safe and appropriate. Patients in need of a transplant should be immunosuppressive, so that risks should be minimized as much as possible. ‘
We need a new drug study to give us hope
By Caroline Scott for The Daily Mail
Graham Wood, 36, chose not to undergo chemotherapy after a drug trial he was enrolled in was canceled
Former newspaper store Graham Wood and his wife Amber, a florist, both 36, have a word for the emotional turmoil right before his scans to check for brain cancer recurrence. “We call it scanning anxiety,” he says.
A plum-sized tumor was removed from Graham’s temple five years ago, and was told it would return at some point, although doctors had no idea when that might be. “Every little headache makes you wonder if it’s back,” he says.
When a scan showed new growth on the old tumor site in February, Graham was not shocked. “I expected it,” he says.
Graham’s cancer – an anaplastic astrocytoma, a rare brain tumor – was first discovered after having a seizure in 2014. Only about 27 percent of people diagnosed with high-quality astrocytoma, such as Graham, live for five years or more.
Graham took part in a clinical trial for a drug called temozolomide, in addition to chemotherapy and radiotherapy. Fortunately, it seemed to work. “I spent several good years watching my son Reuben, who is now five, grow up,” he says.
“I have no doubt that the trial has extended my life. I have beaten the odds and I would like to continue to do so. So when my oncologist mentioned another study that I liked to be involved in after my most recent scan. ‘
This time in Europe, a drug called eflornithine, which has been shown to block the growth of brain tumors when used alone, is being combined with standard chemotherapy.
Graham was enrolled in the trial that was to begin at London’s Guy’s Hospital. But on March 23, he received a letter stating that recruitment to all hospital investigations was halted because of the coronavirus.
Instead, he was told, he could choose to undergo standard chemotherapy at his local hospital. However, this carries its own risks and not only makes it unsuitable for the new trial, but also makes it susceptible to capture Covid-19.
“I chose chemotherapy for the time being because I would like to try the dual approach in the new trial,” he says. “I live every day with cancer growing in my head.”
Graham is just one of thousands of patients in the same heartbreaking position.
A spokesperson for The National Institute for Health Research, which oversees clinical trials in the UK, says, “Many trials had to be stopped to prevent patients from entering hospitals and free up staff to treat coronavirus. Importantly, at this point, we need to identify the Covid-19 studies that are likely to help the NHS find effective treatments, vaccines and other ways to tackle the pandemic. ”
Hugh Adams, spokesperson for the Brain Tumor Research charity, said, “We are concerned that NHS resources are being diverted during this period and whether this is adversely affecting essential treatment.”
A Guy spokesman said, “It is too early to assess the extent to which the Covid-19 pandemic has affected research into other conditions. We know that 23,000 recruits have already been added to Covid-19 studies. ‘
- thebraintumourcharity.org
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