Tired of being let down

lucylife · March 2020

Lol i pressed sent by accident! I Was just gonna finish by saying i sit there overthinking everything, sits cross legged With a boWl of corn flakes curling my hair Well not so much these days lol

On thzt lovely image.i Will depart and leave you all.in peace fimally!

Teke care. Love.and hugs xxx

pollyanna1052 · March 2020

Hi again Lucy. I haven't got the strength to read all your replies...but I did the one to me. Been sewing and overdone it. My left hand kept telling me it had had enough.

Just want to say good luck with the brokerage.

I was offered this but declined.......sounds like many different carers will appear....then you have to tell every one of them, how to do things your way....repetitively!

I have had 5 carers from my new agency. It is usually shared between 3 but can change at last minute. They are all good and kind.

Pollxx

lucylife · March 2020

Thank you. I hope your pollyanna1052 said:

Hi again Lucy. I haven't got the strength to read all your replies...but I did the one to me. Been sewing and overdone it. My left hand kept telling me it had had enough.

Just want to say good luck with the brokerage.

I was offered this but declined.......sounds like many different carers will appear....then you have to tell every one of them, how to do things your way....repetitively!

I have had 5 carers from my new agency. It is usually shared between 3 but can change at last minute. They are all good and kind.

Pollxx

Thank you,
For taking the time to reply.
I hope your okay,
I don't sleep much unfortunately, so there is too much going on in my head in the night lol

Sadly we thought, things were being sorted out as promised from meetings and emails, and they had agencies ready, my daughter chased up yesterday, and was told, these aren't now available, but that she was going to get into it either tomorrow or the next day! So my daughter was like erm... Tomorrow!!! We need this doing now as you promised when you agreed it was a priority!

It isn't nice having to be firm with them, but they are clearly under even more pressure now, but that shouldn't stop them having to get my care done urgently as agreed as we have been waiting so long. We have even said work with us to get pa:s in place. What is frustrating is there is not the the momentum in place. Apart from the money they are putting in each month , there is still £20 000 from the last six months that hasn't been spent on anything As we didn't know it was there, so we just need help finding the carers!

Once it is sorted out, I'm sure, my care will work really well, especially if we have personal assistants, who we can train out selves.
I have just been reading about how you can use personal budgets to work for you and they sound really good in theory and if they are used the way they were intended, rather than just another way of passing the buck and saying if anything goes wrong with your care them it's your responsibility and we won't be liable for it as you are now responsible for it, which is generally what has become the case here, rather than seeing the personal budget can actually extend people's horizons and improve health if used in the right way.

I have tried before, but with limited success.I think the key to anything is just making sure we are properly informed ourselves as we can't always rely on the nhs or social services to inform properly. It isn't always their fault, as they don't always understand how everything works themselves and can't always see outside the box.

Sorry, I know you said you get tired, so don't worry if it's too much to read and take on, as I said, I tend to go on a bit at times when my brains jumpy, not sure why!

I will shut up now.

Love and hugs
Lucy.

newborn · March 2020

This is a good thread. Lots of info, and insight, and very funny too.
Who wouldn't love the wonderfully incongruous image of the poster ' cross legged, with a bowl of cereal, curling my hair' ?
Thanks for that!

lucylife · September 2023

I was just going through my old messages as realised i hadnt been on here for some time and came across this old one. Not sure if anyone will read it but thought given the date i posted the last one , it would be interesting to give a date as when i started getting some care again
I ended up in hospital about maybe 8 weeks ago with yet another kidney infection. Anyway long story cut short, remarlable for me i know, had a bit of a melt down as the ambulance driver who took me in happened ro be my carer several years aga now and she said i wasnt the happy smiley person she remebered which opened the flood gates as we had been 'managing' without care for a long time. Anywaay, this made me open up to one of the few nice nurses in hospital i came across and she said I promise you, i will get it sorted for you and unbelievably i came out of hospitsl and carers turned up half an hour later!
We had been fighting for a long time to get some care in, assed as still needing 24 hour care and it was still left to tmy daughter who is ill also to do it all. We only get 4 , 45 mins a day, and some carers will try and be out in half that so they can get longer breaks and so on, but at least it is something finally. The quality of care is pretty good too,which we have discovered over the years is a lot harder to come by than you would like to think also!
Now i just need to try and stay positive for everything else going on in my life. Just rnjoy the small things that make me smile and try not to worry about what I cant change as much as I do.
Anyway thats my view for the day.
Love and hugs to
Xx

Jimm_Scope · September 2023

I'm sorry it took such a situation to get everything sorted, but I'm glad you feel on the right track now. I went through something similar myself with my Crohn's and depression. I was really struggling to look after myself and was making my Crohn's worse, but I also refused to ask anyone for help. Felt like a burden and all that you know?

Took me collapsing from an internal bleed and being hospitalised for 2 weeks to wake me up to how I was doing and to finally ask for help and support. Several years on now and I'm better and healthier than I've probably ever been, even before I was diagnosed with Crohns!

Thank you for updating us, we always like to hear how peoples stories and experiences go. We're here to support when you're struggling and need it but also here to just be an ear, or some company, or to have fun when times are good/better.

chiarieds · September 2023

Hi @lucylife - it's really good to hear from you again as we chatted on here before about that dratted physio, the good & the bad Drs we meet, & having a genetic disorder, etc.

How is Chloe doing, & your son?

What a wonderful coincidence you had with your former carer, & good to hear about a nurse who was definitely caring.

I think you've always tried to be positive, despite it all, & always came across with that underlying great sense of humour! Hugs to you too, & thank you so much for the update. I certainly read it, as well as all your earlier posts again.

Jimm_Scope · September 2023

Also, I totally understand the "opening of the flood gates". When you're struggling you often put a mask on to hide what's happening, you don't just hide the issues but you bottle up all your emotions and feelings. They don't go away though, they just stay there until the mask falls, then flood gates open as you say. Happened to me more than once, there's an odd catharsis to it.

Woollzie04 · October 2023

lucylife said:

Hi,
I've been thinking about joning and saying hi for a while now, but typically, I finally do it on a bit of a downer I'm afraid!
I 've just spent 9 days in hospital, which would be fine if it was all medically needed.

Unfortunately.that wasn't the case. When I started to recover and it became clear I was medically fit for discharge, I was transferred to a side room.

I was informed that my daughter who is in her 20's who lives with me was no longer prepared to do my care so I had to stay in hospital until a care package could be arranged! I felt like the whole world had fallen away from me. My daughter and I are so close. She has been caring for me since she was young with very little support from anyone else. We have been promised chc funding.for months but nothing has happened as.usual, so my daughter has done it as always.

As I was rushed in due to a life threatening asthma attack ,I didn't have a phone or anyway of speaking to her, and she had been ill so hadn't been able to visit so we hadn't communicated since I was admitted, only what the nurse had told us about each other. I

I didn't know if someone has said something to her, or if she had become ill . It didn't sound like her to say that though. Being in there can make me more unwell and the care is pretty awful where we live to. She actually thought I was too ill too leave still!

When I finally spoke to a social worker and said I wanted to go home, she said she would have to check with my daughter! My daughter agreed , but I was still asked if I would consider going into a care home while they sourced care and I said no as that could take months and I would get more ill.and my daughter needs.me.at home as.She is.also.ill. She said your daughter said the same tjing, she would rather continue caring for you, at home whilst waiting for care than you go int I a home! I said I know! So why are we having this conversation then! They still didn't discharge me!
Then all over the weekend I kept asking to go home and they refused,said they couldn't get in touch with my daughter, if I wanted to self discharch, I would have to get myself down to.reception,.and get a taxi!
I am fully hoisted, and ambulance isn't allowed to bring my wheelchair to the hospital and I need a chair that tilts and has a harness on it for safety! Therefore need a stretcher ambulance to get home and they said if y I I self discharge it your responsibility though,. We can't get u an ambulance because I have chosen to go home to an unsafe place and we can't guarantee anyone will be there!
Firstly !I daughter is there as doesn't go out,hospital already decided, I am competent to make my own decisions so no safe guarding issue.otherwise you would and should have got panel like threatened to.do last year.but didn't as you knew you were wrong then too!
Basically they eventually discharged me on tuesday! Then they still tried to tell my social worker I discharged myself, oh and they rang my daughter up 5 minutes.before.I arrived home to tell her I was in the way! Yet at the weekend that was one of the reasons I couldn't go, because they supposedly couldn't find her number!

So sorry about long message.but it is about the fact they deliberately took away my liberty to allow.me to come.home, without having any legal.power on their side to do so. They lied to me.about what my daughter said, they lied to her as well, we only find out the truth, when we spoke to each other directly at home later on.
We.are.just so tired of being let down by everyone.

The biggest joke is,.They came to see about sorting out some of the care to help us, as they said it was so important, asked my daughter to make any changes, needed to the care plan and the lady would pick it up a few days later and get it sent off so they could get the care sorted out.

As.usual didn't hear anything, Over a week later,.gets.an phone call.asking how.She has been, saying not to worry, doesn't matter that my daughter has put loads.of effort into making notes on the care plan or anything! The lady had already changed it loads herself, making it sound like, my daughter will keep helping even though we've said she needs a break as she is ill as she also has same condition as me and many more beside. so now she has to change it all again, the lady then went on say she had just enjoyed a nice few.days break!

So these people.not think how they come acreoss! I get the are entitled to leave, but when they tell you they are going to sort your care care out as a matter of urgency n cause you have been let down so many times, your family,.is exhausted, the hospital.has just broken the law, and caused you both more distress, and when you think someone finely gets it and they are trying to get things sorted for you and that is why they haven't been in touch, you discover,.They have.just been on a break again, once again leave.your daughter caring 24 hours a day 7 days a week. When they promised they would at least sort out night care.as a.matter.of priority!

SOrry, getting it all off my chest but between, nhs and social services letting us down over the years it is frustratin g.

I don't even go into hospital now until I become critically unwell because we don't trust them, I feel safer at home but again that is more pressure on my daughter, I am just lucky she is so amazing.

I am and I with the hospital though, I don't understand what their motive is. It isn't like they even treat disabled patients, with respect or dignity. They never actually spoke to me properly about their decision either.

Thank you for listening.

I just need to figure out the next step in the complaints procedure now.

Hugs allxxx

Hope you & your daughter are ok? All sounds so awful, it also sounds like neglect & pure ignorance, no one seems to have followed anything up, no one has even listened. Please persue this.

Tired of being let down

Comments

Brightness

Categories