Cancer Stories during lockdown as NHS becomes a Covid-only serviceSun 4:04 pm +01:00, 23 Aug 2020
Yesterday, I reported Karol Sikora’s prediction that as many as 30,000 people could die unnecessarily from cancer over the next 10 years as a result of the NHS becoming a Covid-only service during the lockdown and asked for readers to send me their stories about cancer screenings, diagnoses and treatments being cancelled or postponed. Needless to say, I’ve been deluged. Here are a few of the best.
First, a story from an intensive care doctor, just in case you thought it was only civilians who aren’t getting adequate cancer care.
I am a doctor and have been working in ITU though my specialism is care of the elderly.
I am appalled at the current state of the profession, supine in the face of the lack of evidence in all the restrictions currently applied to accessing care. Unfortunately many colleagues appear to have abandoned critical thinking and become zealots.
I’m writing though about my experience as a patient. Earlier this year I had a standard mole mapping appointment. My back has a number of moles I cannot see and these are checked as part of a cancer surveillance programme. On this occasion a malignant melanoma was detected and removed with commendable speed and efficiency. I was as a result of having this lesion placed on enhanced surveillance so that my back should be checked every three months in case of any new melanoma occurring.
I have to state I’m not personally very worried as the lesion removed was slow growing despite its malignancy.
My follow up appointment was during lockdown. Instead of visiting the clinic and having my back inspected and photographed to check for changes, I had a telephone appointment. An audio call, not even video. I was asked if I had any symptoms. Well as I had no symptoms before the first lesion and symptoms are rare unless the lesion is well advanced I did not expect to have any. The point of surveillance is to catch lesions early before they spread. I did in fact have some itch (a symptom…) But told the clinician it was probably the healing scar from the initial removal causing the itch. I cannot see my back and could not tell if any moles had changed shape, size or colour. Nevertheless despite this pretty inadequate conversation I was deemed fine – next follow up in October.
As I say I’m not personally very worried. But this appointment had literally no value and might as well never have taken place. I feel angry for others for whom this might well have been a missed chance to catch a melanoma early and prevent extended treatment and possibly mortality.
Please retain my anonymity. But this is an example of how even when services for cancer are nominally re-opened, due to the exclusion of patients from attending hospital and being properly examined, they are ineffectual.
Now a story from a patient.
I live in High Peak. I have chronic lymphocytic leukaemia and had a course of chemotherapy at the Royal Shrewsbury Hospital in 2015/16. I was due for my annual check-up at the haematology unit there at 11.30am. on 20th. March. A fortnight prior to that date, with travel and accommodation arrangements in place, I was told by phone that my appointment was postponed for six months.
A couple of weeks ago I was informed by letter that, after a review of cases, it was deemed appropriate to conduct my check-up by phone. This would take place on September 11th “between 9.00am and 1.30pm” and it would help if I could arrange to get my blood sampled and tested in time for then.
So a thorough, hands on (!), physical examination and face-to-face interview by and with the consultant preceded by an in-house blood test (result in c.30 minutes) at the hospital unit which has treated me since my diagnosis has been junked in favour of outsourcing the handling of my blood test to me and to my GP who, in turn, has to rely on the testing service at a hospital in Stockport; and a phone call. My next job will be to ensure the test results reach the RSH and are available for the remote ‘consultation’.
I consider myself very fortunate in not being at imminent risk of my life at this time (I think: if the disease develops as predicted in 2016 I shall not require chemo. to save my life again til 2024/5). I am fortunate in being in good shape, physically and mentally, so can do the necessary running around now required of me. I am also fortunate in being already ‘on the books’ so, even though the previously rigorous protocol for the annual check-up has been dismantled, I am still being monitored after a fashion.
Many of the emails I received were from people who are justifiably angry. Here’s one:
My wife was scheduled for a cancer test, being in a high risk category – family, age and history – three weeks ago. She was understandably becoming increasingly worried as the day approached but was telephoned the day before and told that the appointment has been postponed.
FOR A YEAR.
To say that I am angry would be like calling the Universe big. The whole coronavirus fiasco has cost me my business, the career of my daughter and pretty much everything I have spent my entire life working for, but this is too much. Now these odious selfish… (what? I have no words to describe my feelings toward the perpetrators – cowards, tyrants, murderers?) are prepared to sacrifice my wife (40 years an NHS ITU nurse) on the altar of their imbecility. It is too much, it is intolerable. Can anyone give me a hint as to why? Cui Bono?
I best close before my anger, which I feel rising, takes over.
And many of the emails were very sad, like this one:
This is one of the many heart-breaking stories you will no doubt receive.
A very dear friend of ours, who notwithstanding his age (83) was very fit, walking his dog in hilly terrain at least two hours a day, doing all his own shopping, cooking and gardening, started to have digestive problems around February.
He went to see his GP, who took a blood test, said he was anaemic and prescribed iron tablets, which could (said the GP) lead to some minor digestive problems. I helped our friend to devise small changes in diet to increase his natural iron intake.
Things went from unpleasant, to bad, to worse. In March he tried to see the GP again, but by then the surgery didn’t allow patients in, only telephone consultations.
Other medication was tried, the iron tablets remained mandatory, nothing helped!
Finally, last month, our friend turned as yellow as a lemon. The GP relented, saw him, and referred him to the hospital for tests.
The next week he was admitted to hospital a day after my husband took him there for a Covid-test administered while he sat in our car at the entrance of the hospital.
When he woke up from the anaesthesia administered “for a biopsy” he found out that a duodenal stent had been placed. No explanation of the necessity for this was given, “it was necessary”… He discharged himself next day.
Two days ago he received a letter stating that he had terminal pancreatic cancer, that the GP would telephone to discuss further treatments etc.
He now does not wish to see or hear from another doctor ever again. Yesterday, he has had a very pleasant visit from one of the community nurses who outlined how their service will look after him, and has made his peace with God.
Although he asked us to research “on that internet thing” how long he might still live (according to Pancreatic Cancer UK and Cancer Research UK that is three to six months), having informed him about this, he is now dying before our eyes, and will certainly not make it that long.
An oncologist friend of ours in another town had already warned us 2 months ago about the “tsunami” of cancer cases that would hit the NHS as soon as diagnosis and treatment was “allowed” again…
Our friend will now just be another meaningless number in the NHS statistics. I am disgusted, angry, and terribly sad!
Here’s another sad tale, this time about a reader’s father.
My Father was a 79 year-old retired merchant navy officer who had enjoyed a life of good health until being diagnosed with bowel cancer early in 2019. He underwent the major surgery associated with the condition but responded well to the treatment, a testament to his robust constitution.
Unfortunately in the autumn of 2019 they identified secondary cancers which were only able to be controlled with chemotherapy. However, he responded to the chemotherapy remarkably well, side effects were negligible and the count of cancer cells in his blood dropped to a little above “normal”. He was optimistic and we believed there could be at least a couple of decent enjoyable years left for him. He was benefiting from a costly antibody treatment which was intended to prolong life and I was a little surprised that the NHS were prepared to make such an investment in someone of his age, but we were of course delighted and grateful.
In March his chemotherapy was put on hold, to reduce the “risk” of COVID-19. He was already nervous about infection from the normal flu season so there was little possibility of him being exposed to the virus, except in the NHS!
The lockdown meant he was forbidden from seeing his children or grandchildren, living hundreds of miles away. And his life like everyone else’s was closed down.
In April there was a rapid deterioration in his health, at this stage the symptoms I believed were more due to being confined to the house and a lack of normal exercise. He was hospitalised, with no visitors or even social contact from the nursing staff.
A scan revealed the cancer had spread aggressively and the cell count had risen sharply. It is a fair assumption that three sessions of chemotherapy being denied was the main reason for this.
After a rapid decline my father died in June. Whilst we were lucky to get home home for his final days so he did not die alone, he was largely abandoned by the NHS he paid for over more than 60 years as a taxpayer. He was proud to point out he had paid his taxes every week since 1955.
A GP told him that he would no longer be treated and was only to receive palliative care over Facetime. I cannot believe the religious adulation being heaped on NHS “heroes” when all I have seen evidence of is cowardice.
In summary I believe the arbitrary removal of cancer services dramatically shortened my father’s life. However he was well past his “three score years and ten” and seriously ill so we accept he had to go sooner rather than later. However I know of at least one much younger victim of the cancer scandal.
I have heard countless tales from friends working in the NHS about hospitals being essentially shut and cancer services being withdrawn. I firmly believe my father’s experience will be the tip of a large iceberg, one containing much younger lives which have been unnecessarily lost.
The awful thing is, this crisis in cancer care is far from over. The patient backlog is now greater than it’s ever been and this winter there’s a strong possibility the NHS will return to being a Covid-only service.
There will be a reckoning…