Lack of end of life support

[Worrywart 2]

Hi all,
backstory is mum had a brain haemorrhage 8 years ago, in care home from 2015. Reason was I had life changing surgical complications and ended up in hospital for 6 months. Mum Deteriorated and ended up in a home. Her brain injury developed into vascular dementia and in February 2020 she was admitted to hospital with a chest infection, she was very poorly but discharged back to care home just before lockdown. I had my reservations as the care home was not nursing but they said the community support would step in at end of life .
long story short she died in August. The GP on the day refused to come out as he didn’t have the required drugs to ease her passing, she had a horrible distressed death. The JIC box was not in the home and all the doctor did was send a script request to the chemist that was closed for lunch, the drugs arrived an hour after she died. I’ve complained to surgery and they have admitted more should have been done. I’ve also discovered That the surgery was contacted several times in the weeks leading upto her death and in June ( two months before she died ) a note ws made that she was in terminal decline. No one told us and even then no one arranged the drugs administered at end if life ( if needed of course ).
i feel heartbroken that I never saw her for 5 months before she died and when she did die the gp refused to come out as he didnt have the drugs . Utter shambles,
I coild just leave if all go or I could twke my complaint further but I’m unsure what to do. I wondered if anyone had any similar experiences or advice to offer.
thank you all ?

 

[Blossom50]

Hi all,
backstory is mum had a brain haemorrhage 8 years ago, in care home from 2015. Reason was I had life changing surgical complications and ended up in hospital for 6 months. Mum Deteriorated and ended up in a home. Her brain injury developed into vascular dementia and in February 2020 she was admitted to hospital with a chest infection, she was very poorly but discharged back to care home just before lockdown. I had my reservations as the care home was not nursing but they said the community support would step in at end of life .
long story short she died in August. The GP on the day refused to come out as he didn’t have the required drugs to ease her passing, she had a horrible distressed death. The JIC box was not in the home and all the doctor did was send a script request to the chemist that was closed for lunch, the drugs arrived an hour after she died. I’ve complained to surgery and they have admitted more should have been done. I’ve also discovered That the surgery was contacted several times in the weeks leading upto her death and in June ( two months before she died ) a note ws made that she was in terminal decline. No one told us and even then no one arranged the drugs administered at end if life ( if needed of course ).
i feel heartbroken that I never saw her for 5 months before she died and when she did die the gp refused to come out as he didnt have the drugs . Utter shambles,
I coild just leave if all go or I could twke my complaint further but I’m unsure what to do. I wondered if anyone had any similar experiences or advice to offer.
thank you all ?

My goodness, it sounds like you have had an awful time and been so let down. I would push and complain like mad. It sadly can't change what has happened but could make a difference in preventing the same failures for someone else.

 

[Worrywart 2]

My goodness, it sounds like you have had an awful time and been so let down. I would push and complain like mad. It sadly can't change what has happened but could make a difference in preventing the same failures for someone else.

Thank you, it has been the most awful time Blossom . When my surgery went wrong I never complained despite ending up with 3 stoma bags and a serious problem . with my Mother it just seems nobody bothered. We heard how Care homes were just forgotten about well this is testamount to that. I’m just fed up of fighting but as you say if I don’t complain nothing will change . Thank you for taking trouble to reply

 

[Just me]

Thank you, it has been the most awful time Blossom . When my surgery went wrong I never complained despite ending up with 3 stoma bags and a serious problem . with my Mother it just seems nobody bothered. We heard how Care homes were just forgotten about well this is testamount to that. I’m just fed up of fighting but as you say if I don’t complain nothing will change . Thank you for taking trouble to reply

My heart goes out to you @Worrywart 2. If you feel up to it I would take your complaint further, not just to try and stop this happening to others but for your mum.

 

[lollyc]

We made a complaint about how Mum was treated on a hospital admission. Eventually, 5 months later, we got a "Sorry we failed to measure up to your expectations "letter. Very unsatisfactory, but if you do nothing, you can be certain nothing will change.

 

[Pepp3r]

So sorry for your loss @Worrywart 2 . I questioned why our local doctors never followed up treatment for my mum in the early stages, most of the time she couldn't get past the receptionists as they thought her a nuisance, I didn't get anywhere but I was glad I at least had my say ! If you have some support at home I would say make your feelings known and see what happens , best wishes.

 

[Worrywart 2]

Thank you all for your comments ?

 

[millalm]

@worrywart2 I am sorry to read about your end of life experience, and I know firsthand how you are feeling. My Dad did not have dementia, but was in a nursing home where he had received very good care right up until his last week when I seemed to be the only one interested in the fact that he seemed to be dying. I sat with him 24/7 for a week and battled with the staff to try to do something to ease his pain and suffering. Long story short , the last night I begged the nurse to contact the doctor to give him something more effective, at 7 am she got approval for a shot she administered and he died struggling within half an hour. Like you I was devastated, I knew it was not right, but what could I do? I ended up filing a complaint with the College of Physicians against the doctor. After a year long investigation they found that the Dr had NEVER made a note in any of the residents files, verbally ordered drugs and left nurses to do paperwork, and was so nasty if they called him outside his office hours that they were hesitant to call him the night my Dad was suffering. It turned out that the dosage of the drug that was meant to ease the suffering had been incorrectly noted at one tenth of the strength it should have been which explained why it was ineffective. The Dr was fired by the home, and subject to discipline by his College including being ordered to do training and retesting.

Did it make a difference to what happened to my Dad? No it didn't but it gave me a sense of vindication that it wasn't only me who thought what happened to my Dad was not right, and also that I may have prevented similar shoddy care of other vulnerable residents.

The fact that you are still asking these questions tells me that you need to have some sense of 'closure' about what happened to your Mum. I would advise you to start by finding out how to register a complaint and then write a letter. (It also helps just to get it all out and down on paper, or a screeen ) Regardless of the outcome you will feel better knowing that you tried to hold someone accountable for their lack of concern for your Mum and you may just help to prevent another vulnerable person receiving the same end of life experience.

 

[Worrywart 2]

Thank you for your helpful reply. We have shared similar experiences and it’s really hard that’s for sure. I have put a complaint in and they have apologised which is something but of course it changes nothing. I wondered if my mother had suddenly declined on the day she died or had there been indications of the decline previously. Of course as it was lockdown I didnt see my mum from March 2 until the 12/8 the day she died, I arrived a few minutes after she had died but my sister was with her. The surgery told me they had been called out several times during lockdown and an entry on 24/6 by a doctor actually said ‘ reduce fluids, fatal decline’. Now she didn’t die 8ntil august but that upset me as that surely would have been an opportunity to get the drugs in place but nothing was done.
im not sure whether to just accept the apology or take it further to the ombudsman .I just don’t know.

fhanks again for your reply x

 

[littlebylittle]

I’m so sorry. Have you considered contacting the media?

 

[Worrywart 2]

Hi,
no I didn’t consider that. I didn’t think it would help anyone , it would just make a bad situation far worse in my opinion.

 

[Penelope Pitstop]

I would complain. Before my mother went in a home and was diagnosed I had a bad experience. My mother was ill, hallucinating, which as you probably know is often an infection. I had struggled to get a urine sample off her prior to the doctor visiting. He dismissed the sample didn't test it or take it away to do so. He decided she had a chest infection, based on what I don't know. A friend is a retired GP he said it was unbelievable that he didn't test the urine. It was my friend who said get a sample as thats standard to test. Three days later the prescribed antibiotics hadn't worked. My GP friend said ring 111 not the doctor. My mother was rushed into hospital in an Ambulance with a severe sodium deficiency. Prior to this she had no dementia symptoms whatsoever. She was rocketed into stage 3/4 dementia.

My GP friend and his daughter who is also a doctor said complain. I was too worn down and weary by then so I didn't. I wish at the time I had been strong enough but I wasn't.

I will never know if that doctors actions missed an opportunity to help my mother or if that decline was inevitable. She did recover but another 24hrs she would have been in a coma and died.

I would say go ahead complain.

 

[yabisnis]

I had a similar experience last month with my grandmother. She deteriorated very quickly and the out of hours GP was dismissive about giving her pain medication and even straight out lied to me saying he would get his colleague to prescribe it in the morning who then told me he had only been asked to prescribe oral pain relief which. Shocking as she had completely stopped eating and drinking anything in the four days prior. I only got this sorted after sending out pleas to councillors and MPs and begging/crying on the phone continuously for 2 days. She passed away a day later thankfully not in pain Noone should ever be neglected like this at the end of their life and it's heartbreaking to think of all these other people who don't have anyone to fight for them. I would always recommend filling a formal complaint otherwise nothing will change for the next person.

 

[Lawson58]

Hi,
no I didn’t consider that. I didn’t think it would help anyone , it would just make a bad situation far worse in my opinion.

Perhaps before going to the media, it could be worth writing a letter to your local member of parliament with copies to your local council and any regulatory body associated with this home. Is there such a thing as British Medical Associaton? If so write to them too and complain loudly.

I believe that all of us need to act in situations like yours. If we all sit on our backsides doing nothing, then nothing will change. So sorry for what happened. It is bad enough to lose your mum but circumstances shouldn't make it worse.

 

[Worrywart 2]

Hi, I did complain and there was an enquiry. I had a meeting at the surgery with the clinical lead and a few others, they were very apologetic .
it made no difference to how I felt although I am carrying a lot of anger at the NHS before this ( a hysterectomy perforated my bowel leaving me with 3 bags ). I didn’t want it to become about that anger .
lit was 6 months ago now but I’ll never forget obviously, il never know what my mother went through as she died so I’m going on the theory that she wouldn’t have known anything.
thank you for your comment.