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Waiting times and support package - Page 2 - Carers UK Forum

Waiting times and support package

Tell us a bit about yourself here.
The SW is going to assess for CHC he thinks husbands care needs are complex .
Was a great relief to feel supported and to know I don’t have to take the lead anymore.
He commented that he can’t believe I’ve done so much without support.
So the plan is 2 carers 4 x a day.
Lots of specific things to be assessed by other services .
But hopefully things will start moving in right direction. SW says no reason he can’t come home as long as carers can be found.

End stage kidney disease is an ongoing condition. As long as he’s on dialysis I don’t think he would be seen as needing an advanced care plan but will check.

Biggest issue is the pain in his wrist and the only meds he can take are morphine based which have side affects vomiting and continence. Referrals have been escalated to pain clinic checked yesterday won’t be seem for 18 months . He’s been on list for over a year. This is despite surgeon making referral, we want to see if there is something else to help with pain that is not meds based . Tried cbd oil but doesn’t seem to work. Can’t have amputation as he’s too ill for this .

Thanks everyone for support
Glad to hear you have some progress with SW and recognition of al you've been going through.

Be very careful about him coming home, you want the carers in place first.
I don't want to be negative but I'm thinking about you being left on your own with it all.

Things you need to ask and resolve.

Regarding the issue of him being sick and continence issues with medication - does the SW know about this? make sure they do.
What does this mean for you if he is sick or soils in between visits and during the night, are you able to clean him up and change his bedding on your own? Around the clock night and day?

Also the timescales regarding pain resolution are disgusting, has he fallen through the net? do they not know a solution? Can the SW push on this?

End stage - I've just googled it and I got the wrong end of the stick from the term 'end stage' so I see what you mean about him being on dialysis.
Be very, very wary of the social workers "4 times a day".
How long for?
What will they do?

Sometimes they seem to think that getting dressed, washing and bum changing is enough. It isn't.
Will they prepare food, clean the bedroom and bathroom after use, do the washing, prepare food, be there long enough for you to have some proper sleep or leave the house for shopping, hairdresser, etc?

You need to have a proper Carers Assessment in association with his proposals, that focusses on your LONG TERM well being, not just a week or two.
How will his care be escalated as he gets nearer the end?
I know this is a difficult subject, but the GP should be preparing an "end of life" plan.
If your husband is currently stretcher bound, how can you manage this at home?
If there was a sudden emergency, say a fire, could you safely evacuate him on your own???
Thanks is for replying
I hadn’t thought about so many points. Especially if there was a fire basically I wouldn’t be able to get him out in reality.
Will speak to the SW more, it’s a situation where only pain killers he can take aside from paracetamol is morphine based. I’m not sure if the pain clinic can do anything else but we are hoping there’s some other type of therapy. Medication really wipes him out as well as the other issues, kidney dr doesn’t think there is anything else he can take though


They have never been able to see him in pain clinic unbelievable the hand ot and hand surgeon both made referral. Before they diagnosed snapped tendons we paid for an injection privately didn’t help .

Bit of a dire situation I’m calling regularly to see if cancellations pain clinic but of course he needs hospital transport anyway so no point last minute.
To be honest I’m angry as he was sent home with a broken humerus few years back , made complaint ,lessons learnt etc bla bla bla . This time snapped tendons not diagnosed for over a year by then too late despite emergency surgery after hand surgeon finally saw him, and last time op on wrist was not done as it should be. I could weep .
Please do not be rushed into discharge without everything in place.
Once he is home that is it, you are on your own.
Any specialist equipment that is not in place will have to be screamed and screamed and screamed for and you might just get shrugs and told there's no funding for it.
Is it safe for him without it?
Is it safe for you without it?
Safe and safety are the key words,
comfort and ease are irrelevant here in the grand scheme of things - safe is what matters.

Two words you need - Unsafe Discharge
On word you use - No

You can ride out the storm of your husband wanting to come home and waiting for the kit and everything to be in place
or
you can have early discharge and ride out the storm of fights to get things in place

Not a great predicament.

I've been there in a very minor way with unsafe discharge and it was dreadful with just that.
Physio told me mother could walk and was coming home on hospital transport
That's their new angle to ship them out, send them on hospital transport so you can't refuse to collect them
When she got home she could barely stand on her injured foot, it was an unsafe discharge.
Help from hospital was one call per day and they said unsafe discharge
She wasn't readmitted
We didn't get extra help
We were left to struggle on our own
No amount of calling foul play and unsafe discharge got anything done.

Get in cahoots with the SW to establish what constitutes safe discharge and what is refused as unsafe discharge.

You are going through a lot and will have a lot to take on, don't let them make it harder for you.
Stay strong and determined, use the support of the SW.
Don't be gaslighted.
Ruth_181012 wrote:
Wed Jul 06, 2022 2:08 pm
Thanks is for replying
I hadn’t thought about so many points. Especially if there was a fire basically I wouldn’t be able to get him out in reality.
Will speak to the SW more, it’s a situation where only pain killers he can take aside from paracetamol is morphine based. I’m not sure if the pain clinic can do anything else but we are hoping there’s some other type of therapy. Medication really wipes him out as well as the other issues, kidney dr doesn’t think there is anything else he can take though


They have never been able to see him in pain clinic unbelievable the hand ot and hand surgeon both made referral. Before they diagnosed snapped tendons we paid for an injection privately didn’t help .

Bit of a dire situation I’m calling regularly to see if cancellations pain clinic but of course he needs hospital transport anyway so no point last minute.
To be honest I’m angry as he was sent home with a broken humerus few years back , made complaint ,lessons learnt etc bla bla bla . This time snapped tendons not diagnosed for over a year by then too late despite emergency surgery after hand surgeon finally saw him, and last time op on wrist was not done as it should be. I could weep .
One would think that while he is there in hospital he could be taken to the pain clinic....
Will they ever have any joined-up-thinking.

Aww Ruth, it is a long hard battle you're going through, you are very strong, keep strong.
Give yourself a treat today, yesterday I went on errands and could have chosen 3 locations, I went to the one where I could get a bacon roll and it was a glorious spur of the moment surprise to myself!
Don't let them grind you down.
Unless things have changed since I was last in hospital, there should be a pain manager on the ward Ruth, who has the 'clout' to achieve the best pain management for him. This didn't happen automatically for me, but when I made a fuss - I was seen by her. It was worth it.

Melly1
Ruth, I had seemingly endless problems with hospitals wanting to discharge mum too early.
Everyone, wherever mum was, said what a nice person, polite etc. she was.
Sometimes I think they wondered how I ended up as Attilla the Hun!
After one discharge meeting that both mum and I attended, the only time mum ever saw the "professional" me, she said how good I was, and I should have a job like that. Inwardly I was really upset, as that was precisely the job I had before my children were born!