That’s terrible; I’m so sorry 
.
I am glad that the pain has lessened somewhat but I am so sorry that you’re carrying guilt. Especially when you and your family were so badly let down by the services and systems there to support and care for you. They should be utterly ashamed of themselves.
I know what you mean about people forgetting and for me it’s the moving on with life. I find i can be all consumed with the injustice of it all, and i get upset when people dont respond with utter shock and devastation that i feel. Almost like people withdraw when i share my experience. Maybe that’s just my own perception though.
It all feels so utterly unfair. I do hope that you can find some peace from all of this. You did your best by your lovely parents.
I think a lot of people don’t get it because they haven’t experienced grief and grief that has been compounded by such poor service from the people who’s jobs are supposed to be centred around caring and nurturing.
I realised that if it was a role reversal and I hadn’t been through all of this and everything was normal for me I would probably not have as much empathy as I do now. And be the same as the people who you try to tell.
Unfortunately most of us on here are in a club that most people don’t want membership too and don’t understand fully why not until they join.
I get a bit of comfort from thinking it is lack of life experience when it comes to death rather than just ignorance or selfishness in people’s response to what you are saying.
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OMG i have never read anything so heartbreaking. I am lost for words I too had a traumatic experience with my mum whilst she was in hospital but not as bad as you.
Please keep posting as there are so many lovely people on here who will reply and support you through this friendship site. Its very difficult dealing with it all on your own.
Sending love
Deborah x
I wanted to update on the outcome of my complaint.
I spent many weeks researching NICE Guidelines, NMC Code, GMC Code etc and linking this to my timeline of events.
I received a response. Medically, they stand by each action however there are some inconsistences (I already have medical notes) which I feel have created more doubt.
However from nursing care perspective they have admitted failings and apologised. Actions being taken include:
Full ward nursing team to undertake supervision and complete reflections on the failings identified.
Full ward nursing team have been enrolled in End of Life Care training.
Agency has been made aware of agency nurse training needs.
Refresher training re: pressure sore care.
At this juncture I now must decide whether I wish to request an independent review and I guess I wanted to get others perspectives on this. Should I pursue an independent investigation?
Thanks in advance. I do really appreciate any advice or supportive words.
I’m not sure I have the knowledge to suggest the best route as I don’t know what that would entail, but it does sound like you have a good case to pursue. Hospitals are stretched I know, but they seem to progress with no concern for the individual. My mum also suffered in hospital, though not to the same degree as your case. She went in with a broken wrist that needed monitoring due to her age, but then caught a c difficile infection and developed bedsores badly. I wish I had insisted she came home after having her arm plastered, but you think you are doing the right thing. The hospital said she was fit for discharge and would go to a temporary care home to recover befire coming back to us. She would have to pay for everything. I wanted to know why she wasn’t eating and was barely ever awake but was told she was ‘fine.’ The lovely care home recognised immediately that she was dying and supported us, putting her in a calm and bright bedroom where we could be with her peacefully, and have her needs supported. I’m awaiting the response to my complaint as to why no-one recognised she was dying in the hospital or gave her the care she was entitled to. I hope that your case goes well if you pursue it.
Hi Robin73,
I wish I had been stronger and put in a complaint like you did. You have come this far so if I were you I would take it as far as you can. You have nothing to lose.
Deborah
I am so sorry about your mum. Hospitals are failing older people so badly.
I am so glad that you did have support in the care home and that they made things so comfortable for your mum and you.
I do hope you get some feedback soon from your complaint.
Thank you so much. Those words did spur me on, so ive decided to go ahead and have just finished my own 20 page report which is evidence based with the inclusion of extracts from NICE, medical notes and local guidelines and policies to support my claims that care was below standards.
I did it as diligently as possible so that there is no room for the hospital to minimise my challenges and so the ombudsman can see the evidence in black and white ahead of their investigation.
Ive also been on nursing and doctor forums gathering insight into protocols re my fathers illnesses. Which has opened up further queries.
I’m so glad that i had already requested all notes prior to the complaint because that allowed me to bolster each point raised.
I will keep you updated on the outcome.
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Well done Robin,
You really have been strong with all this and i only wish I could have been
Yes let me know how you get on
Deborah x
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Thanks so much.
Would you ever consider opening a complaint? I woukd be more than happy to help guide you if it helped in any way.
Hi Robin,
Thanks for the offer. I am not strong enough to be honest.
But if things change I will ask you I promise.
Its too painful for me right now
Thanks though
Deborah x
I completely understand. I really hope you have support around you. It is such an incredibly painful journey.
Look after you xx
Thank you Robin,
I have lots of support. I have a wonderful husband and son and fantastic people on here I now called friends for life. I am 15 months in with my grief journey so have got through a lot. It’s still a painful journey though.
I sold my mum’s house recently which was heartbreaking, completed all my executors duties which was the hardest thing in my life to do other than living without mum here.
Keep in touch and let me know how you get on
Deborah
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Hey. I really hope youre doing okay. It’s been a while and I just wanted to update on things.
So ombudsman are currently investigating and this could take a long time. But they have been very transparent about keeping us updated.
Alongside my complaint, I had also requested a number of policies. Most took 6 months to receive, others I am still waiting on. Speaks volumes. Anyway, what I found was that their End Of Life Care policy is 6 years out of date!!! Operational dates were 2010 - 2018.
This is also now being investigated especially because we know that huge changes happened with abolishment of LCP in 2014 and new NICE guidance in 2015. This has also called in to question previous audits and training.
The Trust have admitted that they missed the opportunity to refer my daddy to palliative care. This was the first time some level of acceptance from the Trust on their failings.
What also shocked me was they stated no bereavement aftercare was offered because the hospital bereavment team advises against this as people are “too upset”. This goes against the bereavement strategy in my area, and their own policies (which are out of date).
So I think it is fair to say that a catalogue of errors has been exposed.
It could be a year or more before an outcome but because its now being investigated independently, it has given me and my family a sense of validation which has helped us a little in processing our grief.
I do hope you are doing okay and looking after yourself.
Take good care.
Robin
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Hi Robin,
Wow you have done really well in progressing your complaint. Well done.
Going through the whole end of life process has left me traumatized for sure. I was never offered can’t bereavement help either.
Even if I had I would have refused it though as I hated every single person who I came into contact with when mum was in hospital. Still can’t enter the hospital.
I had a phone call from the palliative care nurse after mum passed and I just lost the plot with her. She said she would report back my comments to the team.
I have been ok . Thank you for asking.
Trying to manoeuvre my way through the grief. Posting on here has really helped me. It makes me feel I am among people who really do understand and I can truly be myself.
How are you doing?
Sending love
Deborah
I feel exactly the same Deborah. They have left such a damaging mark on me.
This space has been a life saver for me and I want to share my sincere gratitude to people here but also specifically you for being so kind over the months. Being able to update and share helps to feel like people do still care about the injustices that we have faced.
I have also signed up to run a half marathon for Sue Ryder as my way of saying thanks. What has made it even more special is the date falls on daddy’s birthday.
Thank you again x
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Hi Robin,
It sure has been a lifesaver not just for myself but for so many people. Where would we all be without this site.
It will take well what seems forever I feel for us to feel some normality again.
Life has changed now and I have accepted I have started a new life. One without my inspirational mum but one that’s still in but in a different dimension. She’s with me every day in spirit and I know she sees and hears me. I can feel her guidance and love.
It’s the only thing that keeps me going along with my family.
Being able to post on here 24/7 is invaluable and I often turn to this site in early hours of the morning when sometimes I am at my lowest and just need to chat to someone Or sometimes just to write something and it’s a great distraction when I feel I need to offload.
People say to keep going and it’s so true. We have to buy it’s hard at times. Keeping positive is something I am working on along with self care. I need to look after my own wellbeing more and start to enjoy my life a little.
I hope you are getting stronger each day.
Sending love
Deborah
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This is very like what happened to my mother last year, when she had a fall and burned her back and then caught infections in hospital so they wouldn’t let her out. I asked for her to be given end-of-life care when it became clear to us that she had given up, but they did nothing, finally discharging her to a care home she too had to pay for, where she died a week later. I did complain to the hospital and health authority but got nowhere, so I wish you a better outcome. I just wanted other elderly people to be treated better than my mum was.
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I am so so sorry to hear about your experience. That is so so awful to hear and the more I talk about my experience, the more people begin to share similar. I believe a public inquiry and further investigations into the care of elderly on hospitals is needed.
Our experience is now with the ombudsman and it may well be a long road before we get the outcome but I will remain hopeful.
I do hope you have support around you and that you’re doing okay?