Late/Missed diagnosis claim

Hello all,

Just been reading the stories of negligence above and it is so shocking isn't it? 

The guilt of not pursuing vs the stress of pursuing Carolyn28 and WhatHappened. And reading both your stories is heart rending to read, let alone having to go though it.  It is so sad and distressing.

I for one am glad that I took it forward (despite the horrendous stress and despite not achieving that apology).  I wonder whether you could get PALS to arrange a meeting with the team to discuss it further before you make any decision.  In my area we had PALS and an Advocacy charity who I went to instead of PALS.  I had several appointments with them and they helped me write letters to the hospital.  They offered to arrange a meeting with me and the hospital, but I was so angry at one letter I'd received from the hospital that I marched straight to a solicitor.  The final paragraph of the hospital letter (after I'd detailed many of the major mistakes - which I believe had just one of them not occurred she would have survived), they said "mistakes do happen..... your Mother's case was a complex one, but overall she received a good standard of care".  I was absolutely fuming!  Nearly 100 major mistakes and a 'good standard of care!'.  So, I knew I wouldn't get any satisfaction from a meeting with them. 

If though, you just want them to verbally apologise for what they have put your though- they clearly won't put it in writing because that would be an admission of guilt - but if they could just say sorry to your face, would that help you feel some closure? If you could at least get that out of them, it would be something.  It's a possibility instead of feeling as if you are 'giving up' - which isn't giving up, but as Carolyn28 says time wasted on a case and the anger that goes with it when we now all realise how precious our time vs learning to 'let it go'. And the bit about the nurses gossiping when you were in recovery about a cock up would be the biggest thing for me - how DARE they treat your life as a piece of gossip! and then like you say, the 'code of silence'.

BUT it's 5 1/2 years down the line for me and I can still repeat some of their words verbatim from her medical records - so clearly that anger and heartache of losing her for me, is still there.  I too have the same guilt WhatHappened - I'd kicked up a fuss on the Saturday afternoon visiting time at the hopsital.  I'd promised Dad I'd take him out in the garden at the care home he was moved to after Mum was hospitalised, in the afternoon on the Sunday. Dad was so badly disabled by his stroke that he couldn't even sit up on his own, so it was a major expedition to do it and for all the will in the world with the care home, it wouldn't happen if I wasn't there... So, that meant I was going to be visiting Mum in the evening visiting slot on the Sunday instead of going in, in the afternoon.  If I'd gone in in the afternoon, perhaps I would have caught things earlier?  If I'd known that I could ignore visiting times (which I decided to ignore when Dad was in hospital afterwards and they tried to kick me out - I said no, and they gave up!), I could have stayed longer on the Saturday and pushed more... , if I'd not accepted what the doctor was telling me and asked for another doctor to come.... but we can't keep on living constantly thinking like that can we?  My Mum was my best friend and I'd given up my career and taken a part time job to help Mum care for Dad when he'd had his stroke 5 years previously, so I'd spent every day going to their house for 5 years (I wouldn't leave the county so I would always be a maximum of an hour away in case I was needed) by the time she died, so I know WhatHappened exactly how you feel at the loss - it's overwhelming, but even more so because it shouldn't have happened then.  I was OK when my Dad died, sad obviously but it was 'the right time' and I got spend another couple of years daily with him.  I do wonder if the hospitals understand really what it is we are so, so upset about when we go to a solicitor and a simple sorry from those that made the mistake would make such a huge difference.

Unfortunately, I'm also not sure that 'lessons aren't learned' either.  I also think there is an ageism policy. Not applicable to you or Carolyn28, but for our parents - it is most definitely there.  My Dad's initial stroke - he was left in A&E for 3 days as no beds on the stroke ward and went from a limp arm to being blind and not being able to even sit up.  He had his scan in the NICE guidelines within an hour, but they failed to give him aspirin or warfarin until 3 days later - so who knows if another clot was formed causing greater damage. I wrote and they agreed their mistake, but the outcome would possibly have been the same, they said but would learn from this mistake.   He had several smaller strokes later and I was always the one to go with him into hospital (it was too upsetting for Mum) and he was on A&E one time and had his scan.  No medication after an hour..... I badgered and badgered - no doctor available to look at his scan. Eventually I got escorted out of A&E, so I rang every 15 minutes and annoyed them that way!  A doctor finally rang me after 4 hours because they got fed up of me ringing and found one for him and he was put on medication. So clearly they hadn't learned from their earlier mistake!!!  This hospital has a CQC rating of Good.   However, it is the same hospital who looked after me with my breast cancer and I had top notch care and still do.

I wonder at some of the nurses' /doctors knowledge too (as you said WhatHappened with your Dad), I saw some horrendous things when I was 'parked' in the hospital later with my Dad on the wards. Things that I'd researched and knew how to look after him, but nurses and aids were trying to do differently and I had to stop them. I saw other things with other patients too.  After Mum's death, Dad was in one time having got pneumonia because he'd developed dysphagia due to the stroke which had also caused some vascular dementia.  I went home in the evening with him having been sitting up and drinking his thickened fluids and eating his special dysphagia food.  The next day was my 50th birthday, so I took the morning off (big mistake!), I got in, he'd been moved to another ward.  They had laid him flat - unable to swallow properly, unable to sit up and with pneumonia. Are they just bl**dy stupid??? He was unresponsive when I got to his new ward.  So, I spent the next 6 hours dealing with 3 doctors, getting him back and detailing how they should care for him. The first response from one doctor was "that's how he came to us so we thought that was his base level" - do they not read notes?   I'd copied the health and welfare POA on the day he was admitted and had it written on his notes. I had made it more than clear on several occasions that my Dad's wishes were to be resuscitated.  One doctor said to me "well they won't want him in ICU" when he tried to talk me out of that decision. Clearly you get to an age and you are deemed to be not worth saving!  When he got discharged, the care home had changed the colour of the flower on his door from green to red.  (It was a symbol for whether to resuscitate or not).  I questioned it and they showed me a form that had been completed on my 50th birthday in the hospital by a doctor.  Do Not Attempt to Resuscitate. The questions they have to answer are about whether any family or a respresentative available / any POA document.  The answer to these questions was NO.  I was there for 6 hours! and they had a copy of the POA on file.  Needless to say it was rescinded that day. 

I wouldn't ever trust a hospital with anyone elderly or anyone young who isn't able to speak up for themselves.  And as we all have said, mistakes happen because they are human, but if only they would accept, apologise and really learn from it then maybe we wouldn't feel quite so angry and upset about it.

everyone needs a hug

It is true that until someone challenges poor care and incompetence nothing will change. 

I couldn't face taking it through the courts, although I did deal with it locally with the PALS team, I'm not convinced they will have changed anything in response to my complaints. 

In my experience I saw clearly the original 10-15mm area on the 2012 scans next to the 65-75mm area on the 2015 scans.

But I also had that 2nd lump pop up literally over night, I woke up, looked down at my chest and ran round the house in a blind panic with a phone in each hand trying to call my own GP and the breast nurse at the Marsden, I'd heard that if cancer is painful it's too late.

It was only the pain that alerted me to the tumour still being in my by now reconstructed breast. 

My sister in law said she was still haunted by one experience where she'd called to arrange an ambulance transfer for a 20 something lad who had presented with what she suspected to be leukaemia but required further tests and assessment in a unit 20 miles away, she didn't think it was urgent, he was sitting chatting and laughing so opted for a non urgent, he then stood up and literally dropped dead in front of her. She was obviously mortified and now lists all transfers as urgent priority. He shouldn't have got to that stage, his symptoms should have been picked up by his GP much sooner. 

Our outcomes are poorer in several common cancers than other similar nations due to late diagnoses, it was on R4 this morning. 

We all need to be encouraged to go back if it doesn't get better, that's always the first line, isn't it, come back if it doesn't improve. 

Go back, be persistent, don't be fobbed off. 

I actually only went back because I had a sudden and very alarming premonition I wouldn't see Christmas.

Even then I'd had every test available and they'd all come back 'clear', what could possibly kill me in 8 months ??? it would have never occurred to me to challenge the 2012 report but at least it prompted me to book fresh scans. 

more hugs

Carolyn

xxxx

@lesleyhelen and Carolyn28, I’m appalled! xx

Hello LesleyHelen,

i agree totally about ageism! I’m now 74 (though convinced I’m not, until I glance at this white haired old bat in the mirror!) and although I was an OT I get treated like a naughty child on the allergy testing ward (managed by a geriatrician!) but  in the BCU they treat me like an adult, and a knowledgable adult at that! 

Hugs xxx

Hi Carolyn28,

I'm interested that you were deemed as high risk because of breast density because they have told me over 50% of women have breast density and that's why they didn't offer any other investigations, added to this I had the microcalcifications, which they also tell me is quite common!  I wonder if the tumour couldn't be seen when it was smaller because of the density? 

It amazes me that different areas of the Country investigate differently, when I have told my Surgeon this, all he says is, "well they shouldn't be" but they are. Some ladies on here have had microcalcifications investigated but as I've said they told me they are common and so with some including mine its watch and wait! 

In 1988 my mother fobbed off my GP with depression and empty nest syndrome.  After a month we took her to A&E who were fab and admitted her with suspected cancer of colon.  Sadly terminal and told weeks not months ! GP visited her in hospital and told her hospital doctors wrong !  She died  a couple of weeks later at home.  I think wrongly we didn’t complain as worried about effect on my father who died of broken heart just under 2 years later.

2011 my sister told she was depressed and had empty nest syndrome!   Less than 5 days later locum GP admitted her to hospital and diagnosed with brain tumour and she died 1 month later,  complained as 3 GPs missed classic brain tumour symptoms,  They apologised, case closed. 

WhatHappened, that is just dreadful xx

moomy, the thing that upset me most during my recent hosp admissions was being treated like a child, not listened to and not being believed.

And moomy you are not an old bat!!! xx

Grogg unbelievably awful ! xx

Thank you for your kind words - it's heartbreaking the things we have all gone through, things that should never of happened.

Sadly every time a loved one or someone close to us goes into hospital we all know to well how much we have to keep a look out for them, we really do, at a time when we want to be able to 'trust' and let the doctors and nurses get on with giving the best treatment possible, sadly, the few spoil it, it is like we are going out to battle 'just to make sure the care is correct'.... something we shouldn't have to do.

It is so upsetting reading what we have all witnessed and gone thought, is it truly any wonder that we developed BC and various other diseases.

Sending my heartfelt love to all xxxxx  

Hi Grogg,

This was truly horrendous for you all, living with the aftermath of these mistakes can be so hard.  They are ridiculous at times, they get it so wrong and it the mean time we are made to feel like we have a mental problem because we want to pursue what we believe is wrong with our bodies. Apologised, case closed, its unbelievable.  

Best Wishes to all who have responded to this discussion.