As I read today about the failure of GP’s to correctly diagnose severe illnesses in people and fobbing them off, only for them to die a short time after, I reflect on my own experience of the NHS establishment recently during Mum’s illness and death. It is not a good reflection that I find staring back at me.
I experienced personally the false confidence of the medical establishment in this country and the brushing off of symptoms as nothing, and I found myself repeating those confidences to Mum myself (incorrectly) but with a trust in “medicine” that is now lost forever. Yes, it allowed me to carry on with my life without any concern, and perhaps there should have been more concern from me but I am not a doctor myself and had no training or experience in the field of brain cancer.
Based upon my experience (mostly second hand I suppose as Dad was the Primary contact) I would describe the medical establishment’s approach to the family of patients is as follows:
Keep the family busy with thinking the right things are going to happen, but secretly know that these things will never be carried out and the patient is going to get nothing form the NHS. Ultimately a conclusion for the patient will be reached one way or another and the failings of the bureaucratic system itself can be blamed on things other than cost and staffing.
I will explain this overview with personal examples to provide some testimonial evidence:
Mum first experienced brain issues after her own mother died and became extremely anxious. She spent many fruitless hours on the internet trying to match her symptoms to some condition she might have. I spent many hours on the phone to her letting her tell me the latest self diagnosis, the symptoms, and how she was continually failing to deal with them. She went to her doctor who wanted to up her anti-depressant medication and rightfully she did not want this so refused. The doctor in response wanted to refer her to the Steps To Wellbeing mental health people and she agreed, but had to wait many months to be seen due to a huge waiting list. So while waiting she sought her own counselling, and after seeing three or four different councilors gave up as they were unable to help her.
When she eventually got to see the “Steps” people they also were unable to help. This looking for counselling went on for years and she knew there was something wrong but could never find out what it was. Her chief complaints were insomnia and a lack of smell and taste. Neither of these conditions were ever taken seriously by the NHS even though a lack of smell and taste is an indicator of a brain tumor.
In february of 2023 mum drove her car into the neighbour’s car as she left to go shopping, it was a scrape along the side of both cars so nothing serious but it put her off driving and wouldn’t do so afterwards as she felt unsafe driving. This may or may have not been an indicator of things to come.
In May mum attended two events that my Girls performed at, and on both she struggled to stand from her seat and needed help but shrugged it off simply as getting old.
In June mum walked into town and after shopping she fell over injuring herself. She fell against a car and then down to the floor, and couldn’t make her body get up. An ambulance was called and she was taken to hospital where some rudimentary physical exams were carried out and she was sent home with a diagnosis of a bruised coccyx. In a follow up appointment she was tested “cognitively” with some memory tests and the NHS fitted her house with some grips and toilet aids. I was concerned that she had Dementia like her mother before her, but the doctors had ruled this out based on interviewing her.
Mum continued to have further falls at home and I initially thought she was attention seeking. She also became incontinent and after further NHS checks and memory tests, was given no diagnosis but was issued a zimmer frame to use and adult nappies to wear, but nothing more, shameful. None of us knew what to make of it, and considered that she was attention seeking because Dad had been ignoring her and was fed up talking about her problems.
At one point in July she phoned me to ask for help as Dad was being mean to her and yelling. He couldn’t understand how she was unable to get herself up and why she would agree to things and then immediately not do them. Mum asked me to go over there to referee and I did to find that mum was fine in herself and acting normally but did have issues moving around, and her speech was a little slurry. I asked if she was aware of it as Ali had noticed the other day on the phone, but she was unaware of the slur. In the coming days I would speak to her on the phone or in person and her speech became more difficult to understand, but she seemed to not be worried by it and it did come and go on different days. Ali and I thought that she may be suffering Dementia and put this too Dad, but he shrugged it off as mum just having a bad day. Ali was mad that the NHS had not done more like a MRI or CT scan when she had fallen, something was clearly up but none of us knew at this time the reason.
In the next couple of days mum would phone up random people asking for help, including Ali’s Dad asking about elder care. Something wasn’t right and was getting worse.
Before we went on holiday to Scotland in July Mum wanted to give the girls £20 each and while i protested, she persisted and I ultimately agreed. This was a normal conversation and she wished us a good holiday.
Mum phoned while we were away to say they had to put their dog down as it had become very unwell. She sounded upset as you might imagine but otherwise okay so I was unworried for her health, although she had forgotten when my birthday was, and this added to my thoughts on this being Dementia. She had asked what my eldest would like for her birthday and I said I would send her a link to some lego, which I did but never got a reply.
On our return we took Mum a present from the holiday and she just wasn’t her anymore! She would only laugh nervously in response to questions, there was no conversation in her. I told my brother and he spoke with her that evening over skype only to confirm that there was something very wrong. He tried to get Dad to take her to hospital that night and he wouldn’t and this time said she was just suffering from the loss of their dog, but that wasn’t it and we could tell! Dad promised my brother that if Mum hadn’t improved by Sunday that he would phone the NHS.
As reported by dad, on the Sunday Mum spent a long time in bed that morning, and didn’t want to get up. When she did get up she did not put on all her clothes and came downstairs half naked. She also was not making any sense when speaking and Dad phoned 111 to get advice. They asked her to come to the phone and dad relayed the message, and they could hear him asking and mum not responding and not coming. About midday he phoned to tell me he was taking her to hospital.
They were there past midnight before she was admitted having done basic tests of blood, blood pressure, memory, ECG, and other simple things but they could not find anything immediately wrong. Given her medical records containing a history of skin Cancer I cannot think why they did not immediately suspect something else was going on! It was a very poor and unthinking process that she had to endure.
The same basic tests plus a CT scan were again run once she had been admitted, which revealed nothing. So eventually after a couple of days in hospital they got around to giving mum an MRI, which should have been the first thing they did! It revealed multiple brain tumors and a shadow on her lung. Suddenly eveything made sense to me, it was cancer again.
The shadow was further investigated a week later with a biopsy sample taken, and this turned out to be melanoma, which made sense but this was not the thing in her brain, it couldn’t be!
As a result they immediately gave her a steroid to reduce the swelling in her brain but they gave too much and triggered a “bleed on her brain” according to a doctor. Why would a tumor bleed from steroid use?
The reduced amount of steroid however brought much of mum back to us for a short time. This was the only treatment that they ever gave her as at the treatment meeting they decided there was nothing they could do!
The family never found out what was in Mum’s brain and no biopsy was taken so we will never know. Officially it was Metastatic Melanoma but this is only an agreed upon diagnosis, without evidence and I believe it is incorrect.
The one meeting that we had with a Doctor confirmed that they didn’t know what was in her brain but they saw it was so advanced they only estimated a few weeks for her to live. This meeting seemed to take ages to happen, and we were promised an outcome for many days, each with the day coming without any news. On the final given day the meeting was postponed for a week, citing the strikes as I recall. It was weird talking to the nurses on the ward as what we had been told by a doctor was scoffed at by them, and we saw that their view was correct.
We then waited for mum to die over the coming weeks as nothing according to the NHS could be done. in all she was in hospital for a little over a month, from the end of July to the beginning of September
Initially mum was given a drip but this was taken away which became a problem as she would not eat or drink on her own, she seemed to not understand the need for either. Food was still brought to her but it didn’t seem like the nurses were making her drink. On the subject of the food we told the hospital at least twice a week that mum was a vegetarian but they kept serving her meat, which she wouldn’t touch, and this didn’t help either. I don’t know how meat ended up on her menus, but I was shown menu choices including meat that “someone” had done for her.
She had a lot of problems with her waterworks in the last weeks and needed help to go to the toilet, initially across the ward. Getting a nurse to help her was a real problem and she would wet herself in bed and need changing before anyone helped. If the family were there we would ask for her to be helped but even then there was a long wait. Then she would be left in the toilet for ages and couldn’t get out on her own, yet the nurses didn’t notice again and if the family were there waiting they would either remind the nurses or help her themselves.
One of the promises that was made after the treatment meeting was that mum would be given pain killers, but none were offered. One time I went in and she was in a lot of pain and no-one seemed to have noticed, in her words “it was the worst pain I’ve ever felt” So I pestered the nurses and a Sister brought someone else Oromorph pain killer instead. It was only when the other patient indicated who it was for that the sister gave it to mum and took some notice of her anguish. The nurses later manipulated her intestines to ease a blockage.
My brother, who lives abroad, had been in the UK briefly when Mum first got a diagnosis but was in Portugal for the most part and he had asked if the hospital could tell him what the brain condition mum had was, and the the nurses promised that they would ask the doctor looking after mum and he would write to my brother with the detail, as none of us knew what was going on specifically, there were no records or scans shared with us.
Nothing happened and my brother went on a crusade to find out, and wrote to the local surgery and got access to Mums records, but there was nothing there, as we were told that she would have to be discharged before the records would be sent out, and this never happened. To this day we don’t know what killed Mum.
When the treatment plan meeting revealed that nothing would be done, we were told that Mum would be fast-tracked out of hospital so she could spend her final days at home, but nothing ever happened and in the end her condition became too bad for her to even be discharged (although discharge papers were then subsequently served to her in the hospital bed). All we were able to arrange was a hospital bed for the home which Macmillan cancer charity installed, and it sat there unused until they took it away again. No-one spoke to the family about the fast track discharge again and obviously it never happened.
As above, without treatment Mum just got worse and died in hospital. Her final days were without any assistance apart from a catheter and a drip, the steroid tables were stopped.
When she died in the early hours of one morning, she was just left there in the ward, and when the family were called in she had not been moved, it must have been horrible for the people around her! Neither me or my father had imagined that she would be left in the ward, and had talked about her being put in a chapel of rest or some similar anti-room away from the other patients. It was a shock to us and it just seems so broken of the hospital to do this, so badly managed and perhaps lacking in resources that it was all they could do was “nothing”.
This whole experience has forever changed my view on the NHS and its staff, it has also filled me with the will to never go to public hospital myself as I doubt I could ever deal with it no matter how unwell I was, i’d try to get out.
Their inability to do basic necessary things like take Mum too and from the toilet, to give her the vegetarian meals they promised, to actually fulfil the promises of providing information, of treatment or of fast tracking her release when they said they would. The British NHS is on its knees, and the staff play a game of pretend care (and it’s not their fault).
Mum’s death was fast, scary fast, and from the point of diagnosis to the end it was only about a month. This seems impossible to me and certainly fits into the category of a turbo cancer that I’ve heard about.
When we were done with our goodbye’s Dad and I were lead to a small room where we were told a Sister would come and talk to us. This took over half an hour and in that time various nurses and staff would come into the room, express shock that someone was in there as they wanted a break, and then leave. Clearly the small room doubled as a break room. When the Sister came to see us eventually she didn’t have much to say and simply offered us a leaflet and told us to phone the number on it, and the people on the phone would tell us what to do next. It wasn’t very satisfactory to do this by leaflet and to then have to deal with a faceless person down the phone line, but that’s what happened.
We phoned the number the next day as we didn’t have to do it immediately and started the process which initially was explained to us well over the phone, but things didn’t pan out like we thought they would. First we were told that a coroner would call and confirm the cause of death with us in the next couple of days, and no call came. I phoned once to ask when we should expect a return call and was told it would be soon. Then Dad phoned a couple of days later and was told that the coroner had already spoken to me! Smells of failure and gamesmanship to me.
Later that week dad eventually got to speak to someone who said the cause of death was Metastatic Melanoma, What a joke! We were supposed to believe that a nearly 20 year old small skin cancer that had been removed had grown into Mum’s brain and not caused any noticeable issues prior to a month before death, absolute nonsense. This was an aggressive something that came on recently and was linked to all those damn covid vaccinations she took. I think it probably was a number of blood clots in the brain, either that or a different cancer that sprang up in the absence of a properly functioning immune system, having been suppressed by artificial MRNA.
So Dad booked an appointment with an office in town to sign paperwork and we were asked to arrange an undertaker. Dad dithered a bit on what to do with mum’s body, he wanted to check with the family about Mum’s wish to not have a funeral, and couldn’t decide on a funeral director to use. The hospital after making us wait for so long on every decision they made, then kept pestering us with phone calls to provide details so they could be shot of Mum’s body. I got grumpy at this perception that they took all the time in the world to make up their minds, but we couldn’t have a few days! Their persistence was almost daily either calling me of dad and I had finally found a NHS department that actually worked, I couldn’t believe it!
Still that was the end of our experience of them, and I’m very glad to not be dealing with it any more. The British NHS is beyond dysfunctional and no amount of money thrown at it will fix it, stay away, very far away.
However, I need to make it clear that I do not place the blame on the NHS for Mum’s condition, that is not their fault at all. My complaint is only with her hospital care after the fact.