The one about the standard of care potentially falling at weekends and BHs struck a chord, as my mum went into hospital on a Saturday, seriously ill, and died shortly afterwards. Needed an immediate operation, which she didn't get. I've never been absolutely certain it would have saved her life, but I think it might, Unfortunately the consultant was on a special night out, and the worried junior staff could not get him to acknowledge the seriousness of the situation. This was 20 years ago. Nothing changes.
Written by
Hezekiah
To view profiles and participate in discussions please or .
First of all I am sorry about your mothers lack of care and that it has haunted you for 20 years.The article is absolutely shocking and heartbreaking. It was basically disaster after disaster. That poor child and her poor family. They are in a place where no one wants to be.
I think people still tend to be reluctant to question their doctors decisions, their opinions are put across with such confidence that it must be difficult to ask questions and show a lack of confidence.
When I was growing up - I’m 73 - the doctors word was law - people wouldn’t have dared question their decisions - I used to think that attitude was dying out but I’m not so sure now - I still meet people who don’t know much about their treatment, they don’t know their lab test results, don’t know anything about the drugs they are taking and unquestioningly obey their doctors.
They clearly think I’m a bit odd for wanting to know about my conditions but equally I can’t believe that they don’t want to know.
Then again these days I imagine too much questioning of medical decisions could be interpreted as ‘abusing the staff’.
Hello Fruitandnutcase, your post sums it up in a nut shell times have not changed, patients are treated differently if they complain. Doctors see this as undermining their training and knowledge as do some other medical staff. Depends how you complain too as to whether it is offensive or questioning as to whether its abusing the staff.
I'm guessing that more people may be taking an interest in their diagnoses, care, and treatment these days, especially if they have knowledge of a negative experience, or an understanding of the stresses in the NHS system. The more the merrier really, as this may help medical staff to acclimatise to the idea that some patients are willing and able to play an active role in managing their health.
Excellent reply Fruit and Nut case, and so true. My mum and dad are 78 and 82 respectively, and still very much have the view of a doctor's word being the law and the fear of contacting them for not wanting to "bother" them. Unfortunately this fear impacted directly on me too as when I developed symptoms of RA at 13 my mum wouldn't believe there was anything wrong with me, and would not contact the doctors in case "they thought she was mad." As a result it was about 7 months before I was finally taken to our GP who diagnosed me immediately. Unfortunately, by this time damage had already started to occur and as we all know, once it's there it can't be reversed! So, obviously whilst we should, of course, ideally respect a doctor's knowledge and experience, it would be good if people like my parents (working class, intimidated by authority), felt more able to speak up. At least I can try and do it for them now if it's ever necessary! X
I suppose the people I know who don’t question their doctors are all about my age - I’m in my 70s and they are not professional people.
My mother was the end! I wouldn’t say she was ever intimidated by doctors or anyone else for that matter.
In fact she was quite fiery- I can remember our family doctor coming to visit my brother. It was winter and he came in and took off his heavy outdoor coat and Homburg hat. He examined my brother and said that that he needed to have time off school - he must have been about 11 or so.
My mother said he couldn’t possibly do that and the doctor looked at her and said ‘Mrs S - what is more important - your son’s health or his education?’ She replied ‘his education ‘ at which point the doctor just put his coat and hat on and said goodbye!
My brother had croup so he saw the doctor regularly but for some reason or another I was never, ever allowed to have anything wrong with me. She used to say ‘It’s your imagination’ and that was that.
So I grew up not confident enough to be sure whether I was really feeling as bad as I felt or whether it was my imagination which made it very difficult to be pushy if (when) I got the brush off from a doctor.
As luck would have it by the time I was so poorly I was practically on my knees I got to a doctor who actually believed me, did blood tests and found I had Graves Disease I was almost overjoyed (I had seen a doctor just two months before that and was told that ‘I was needing my holiday’)
I was not like that with my boys - if they said they felt ill then they felt ill. I remember when my younger one was old enough to go to the doctor himself being treated repeatedly for tonsillitis - in the end it I diagnosed gastritis from one of those enormous medical dictionaries you used to get pre Dr Google - next time he went I told him to tell the GP his mother thought he had gastritis! Bingo - he was fixed after that.
Wow! I'm so glad you learned from your mother's not so good example. It's horrible and frightening to not be believed as I'm sure you experienced. It leaves it mark too as even now 40 years later I'm still worried I won't be believed (eventhough amazingly I've never really experienced that too much with medics - especially senior ones). As soon as my kind GP saw me all those years ago, irrespective of my age, he suspected RA immediately. That's pretty good going even by today's standards.
I totally get your point about not being confident enough to necessarily know whether something is that bad, or should I just put up with it, or am I blowing it out of perspective. It's exhausting to doubt yourself so much. When I had my first couple of Osteoporosis stress fractures in my ankle, both times I put up with it for about 2 weeks as I just wasn't certain it warranted attention! Obviously they did as I ended up in plaster casts. Likewise when my cornea perforated for the first time (due to RA) I almost didn't go to casualty as the fluid leaking out of the front of the eye actually made it more comfortable!! It was only the fact that the eye docs had warned me about 3 days beforehand that any change in vision to go straight back to them! Obviously my vision changed immediately it perforated. I spent the whole day mulling it over, and unfortunately, my mum said yet again "it looks normal to me, you can't go bothering them out of hours." It didn't look normal and thank god I was old enough to decide otherwise by then (24) as I was admitted immediately and had to have my first corneal transplant. I don't mean this to sound as if my parents are uncaring, they are most certainly not, it's just the possibility of "embarrassment" or " bother" takes over.
I'm so glad you've "believed" your children. From my perspective I can't stress enough how important that is.
I'm glad you were finally believed about your symptoms too - but what a thing we feel we need to say - being grateful of being believed. Especially if you are a woman, it would seem? It seems like that you even experienced that with your own mum with her believing your brother at least, even if she wouldn't take the docs advice. Sounds like you couldn't even get that far!
Know what you mean about your parents not being uncaring. I think there’s a generation of people who need something very obvious before they accept there is a problem - thank goodness you found a kind doctor who realised you had RA and thank goodness you took yourself off to the hospital with your cornea - that was so serious. It is ridiculous isn’t it when you are a grown up and still ‘wonder’ if you are bad enough to need to take things further. x
Thank you. Yes, it is ridiculous that even as adults we're still second guessing ourselves so much. These habits become very ingrained, don't they? Thankfully, as you say, I was very lucky to have a good GP and therefore a very quick diagnosis. I will always be grateful to him for believing me. Best wishes xx
"I was not like that with my boys - if they said they felt ill then they felt ill." Yes, I think that is the best way - to accept what others tell you as true, and assume that they know their own body and whether they are ill/unwell. A pity doctors don't always take this approach!
When the boys were little we had an amazing GP - the little one has repeated and massive ear infections - well perforated eardrums and this doctor actually said ‘you’re his mother, you know best if something isn’t right’ so even if he couldn’t see anything was wrong he trusted my opinion.Could do with a few more doctors like him. x
This story in the guardian is very sad but none the less shows that times have not changed , as for candour it is still very much a cover up when something goes wrong the hardest part is someone has to live with it. Maybe some doctors find it hard when they have lost a patient they are only human like ourselves with feelings I am sure. But not easy to see a proffessional that way when your the one who has lost a relative or suffered injury yourself. Makes you even more bitter when lessons are not learn't. I appreciate what you are saying about shouting but no matter what way a person exposes poor practice,even whistle blowing fellow colleagues these things still go on. In the old days they used to label ladies as nuerotic so no one would believe them, and if doubt is thrown on the mental capacity of the informant once again doubt is thrown on their understanding of what happened. Speaking from experience doctors are still very cagey about giving info to a patient or family.
I think the point the bereaved mother is trying to make…is no matter how much the clinicians refute your suggestions they are wrong, or have missed something……..don’t worry that you will thought to be crying wolf…….cry out as long & loud as it takes to get something done.
No Hospital or Doctor is going to voluntarily day “ yes I made a mistake so your loved one died “. now are they?
So there need to be legal guidelines.
I do believe there have been some changes in some hospital regulations where nurses & more junior doctors can now report senior doctors confidentially, but how that will work is yet to be seen.
As HKG says…she was an NHS insider,& she couldn’t get past the “Consultant is God” myth…..so apart from making up a sandwich board and walking up and down the ward & all around the hospital corridors ….what does one do to save a loved one’s life?
Sadly maybe the Redtops? They will trumpet the story from the roof tops.
But what if you are wrong and they are right ……I’m afraid I say the hell with that …if I had somebody I wanted to save I would look as stupid as anyone would like to make me look…..if it kept them alive…….look at the tragic outcome of not breaking the pattern of “The doctor is always right“.
As the mother says….she just wishes she could have done anything more to keep her daughter alive.
Very true what you say, however often what truely happens is many still think doctor knows best. Hes Human too and we all make mistakes, think it is easier if you have stood up for the best treatment no matter what because it makes you feel better inside to know it did not go unheeded.
Believe me if a self important bully …be it a doctor or any in any other profession ….is publicly exposed amongst peers….he/she will often back down & do what any decent person would do….listen to what is being said.
Clinical decisions are notoriously difficult at the time……as we have seen recently anonymous doctors - have been very publicly challenged on a different but equally heart rending case, & they were judged to have been right.
But until put in such a difficult position, I don’t think anybody knows exactly what they would do………
I did end up in the papers. I tried with the hospital first, emailed the chief exec and nursing director as I knew them. No response. Contacted MP and at same time submitted an open letter to our local paper being very careful to not apportion any blame. Well, it didn't go into the letters part, the paper contacted me to say the Press Agency were interested and things went a bit crazy. All the major newspapers ran it, I was on BBC and ITV news. The hospital were keen to speak to me then.
Did it make any difference? No, course it didn't. A mealy mouthed apology with 'lessons learned '.
Yes I agree that is what usually happens…..but somehow there has to be a way of proving negligence ….like senior doctors not arranging fully qualified stand ins …& telling the ward sister what is happening….when they want to go off on a social occasion when they should be on duty ….and the perfectly understandable emotional reactions of relatives?
Did I mention accountability? Haha. The rotas are usually organised by a fairly low grade admin person and not the doctors themselves. They will offload to the admin to sort out who quite often wont understand the consequences and everyone ends up shrugging their shoulders when there are glaring gaps.
To be fair, generally the on-call consultant isnt needed and registrars and junior doctors take the lead and are generally more than competent. It's when things go wrong that they really go wrong. And no one speaks to each other either.
Things don’t need to be any where near going wrong….Junior doctors don’t even appear to read your outpatient clinical notes….even when you are sitting in front of them and they are clicking away on their keyboard…..…I don’t know what they’re looking at ….but when one young man actually recommended a procedure I had done very recently…..that doesn’t need repeating, I sort of gave up…..
NHS waiting lists are unacceptably long…and getting a GP appointment is nigh on impossible for a new medical condition ….hospitals are seriously understaffed in most areas….& have really weird messages on their answer phone …like after about 6 rings it says “there was no answer to your call if you would like to try again press one”
If you want that extension of course you try again ……but after about three attempts I got the message that nobody was going to pick up that phone….. so if you wanted to actually speak to a human being you had hang up to call the hospital again.
The system is dead but nobody has the courage to bury it….& instal a 21st century model.
It will no doubt be too late for me…but I do hope some day soon, somebody with a bit of common sense gets to grips with sorting it out.
An absolutely heartbreaking article and probably resonates with many people. When my late Mum was in hospital I found it almost impossible to navigate through the system to actually speak to someone that knew anything. Perhaps not unusual, but I was a Primary Care Governance Manager in the NHS so would probably have had more of a fighting chance than others and I failed.
I think there’s an institutional failing around accountability. There is none. And that includes everyone whatever their role.
My darling dearest friend is very seriously Ill in hospital now and her daughter is facing the exact same situation. She cannot get any answers from anyone. She even called the acute oncology ward last Sunday (bank holiday) to say her Mums heartbeat was crazy, she was in extreme pain, she was unable to even have the strength to turn in bed and they still didn’t want to admit her. They had no option as she ignored them and called an ambulance and she now on IV rehydration, steroids, pain relief and nutrition. I dread to think what may have happened if an ambulance hadn’t been called.
As the lady in the article says, it’s not about capacity, it’s about attitude and accountability. And giving a toss.
How I agree with you , your last line says it all some staff give their all ,others don't give a toss. Most of us here sound like we have been through similar situations but still nothing changes much. The lady in the article had to watch her daughter die , sensed something was not right and then go through the ordeal of the ensueing enquiry along with her greif. It is so sad.
What a dreadful account of a tragedy that should never have occurred. My heart goes out to them. Reading of the total failure of 'care' offered must have brought all those awful memories of your poor mother's unnecessary suffering and death flooding back. Unfortunately, such stories are only too frequently related. Never be taken poorly in August either when, it is said, the newly qualified doctors start in hospitals
If I hadn’t shouted out loud and taken the approach of consultant doctor knows best I wouldn’t be here it took far too long to find out I had bowel cancer in my 30’s with a rare tumour but who cares about how rare it was. Anyway the one thing that really gets me is after all the time waiting around and fighting for treatment I used my works private health scheme and the rotten consultant I had (although he was a great surgeon) ended up with a big pay day. It still bothers me that on seeing him as a private patient he wanted me to shake his hand as I was now a private patient honest to god I could have decked him because as an NHS patient he ignored me and thought I was a stupid woman who didn’t know what she was talking about with zero pain threshold. Grrr I’ve got other stories to tell which have happened to other members of my family too so I know for a fact it’s not a rare occurrence but docs are human too and at the end of the day I lived to tell the tale because of them eventually haha.
Yes, my wife tells me August is the worst month to be seriously ill. It's a shame there is not sufficient "slack" in the system to take account of this, and ensure that the newly qualified doctors are given adequate support and backup. Of course, some would argue that it is only through your failures and taking responsibility that you can grow a thick enough skin to realise that you cannot always save a patient, or indeed that you may make mistakes. I also find the question of "accountability" very interesting. Out GP surgery has 8-10 doctors, and eventually we asked that they appoint one to be responsible for our son's RA treatments. They agreed and did this. Funnily enough, since that day there has been precious little need for a "case manager", but it's very good to know that he (and we) have one.
Such a sad story.I've responded in other posts this past few days about the level of misdiagnosis within the medical profession (20 - 40 % of GP consultations and 39% in RA patients...are incorrectly diagnosed, acknowledged in part by by the BMA).
What is lacking is accountability, we all make mistakes, but some of us own up to them.
Quite. I don't expect doctors to be superhuman, and I have a l lot of sympathy for those who make honest, human, mistakes. But the culture of cover-ups in the NHS is too big to be... well, covered up. So many times I'd have forgiven if only someone had held their hands up and said "We got it wrong" and actually tried to learn from their error. But - and it really hurts to say because the our health system is precious and currently on a knife-edge - that's not the NHS way.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Plaquenil/Hydroxychloroquine and the Retina. Also for your info. - check out the NICE guidelines on NHS treatment of RA.
Seasonal flu advice from the NHS
Where to go from here with the Drugs.... Humira???
any ideas how i can ease the pain from Ra?
How long to find the right treatment
