Waiting times and support package

Just wanted to ask about other carers experience of time scales. I’m aware that we are all in different areas of UK. We are in Wales.
My husband has been in hospital/ rehab for over 6 months now.
He has a long term disability which effects his mobility and now has no ability to walk so house will need to be further adapted. This is in hand and grant agreed for wet room. Builders sorted.
He will need a wheelchair adapted or possibly made. The waiting list is long I’m told. Referral been made to this department.
Referral been made to Social Services, there is a waiting list.
We have had an initial meeting when they told me waiting for social services to allocate and they will train me to use hoist.
Nobody will commit to how long before things will start moving and we meet with social worker.
My husband has what is called complex needs and has end stage kidney disease and has been on dialysis 3 years so is defined as life limiting illness. Of course I want him home and he wants to be here with carers.
He has lost use of one hand and this can not change after 2 accidents . Operation took too long because of pressures of Covid and was not identified he had snapped his tendons. Plus 2 ops on wrist same hand. Has chronic pain only drug he can use is paracetamol and morphine based meds which have significant side effects.
What are others experience of how long it took for a care package to be put in place.
Thanks for reading

Hello Ruth
So sorry to hear about your husband.

Not had experience of such to your extent but have had my mother needing some support packages which were in place before she was due for discharge but this was way before covid and they were minor things and mostly care related.

Be strong and do not accept discharge before it is all in place because you will be the ones struggling and suffering.
Unsafe Discharge
Those are your grounds for refusal if things are not available.
Be very wary of physio and occupational therapy, they seem to exaggerate the capabilities of the patient in order to make the discharge.

One occasion, there was norovirus in the ward bay my mother was in, there were three people bombarding me with phone calls to discharge her and each time I flatly refused saying norovirus in the bay you are not letting patients into the two empty beds and you are not transferring one patient to rehab hospital so she’s not coming home, it is an unsafe discharge.

They kept calling so I stopped answering my phone.
That put an end to their harrassing and trying to wear me down!

Stand firm. It’s for the good of both of you.

If it is a long wait it is horrible but it will be better than struggling and perhaps being left high and dry without the equipment being told there are no funds for it. While he’s in hospital they have incentive to get the equipment because they need to do the discharge.

On another level, his care at home, are you fully aware of how much care you are giving and they are giving? are they popping in a couple of times a day? will you be getting a full nights sleep or having to give care during the night as well in the day? My mother has just had her advance care discussion with the GP, I wanted to do her end of life care at home, but she was not having it, she wanted to be in hospital because the care would be nurses a couple of pop in a day and same carers, the rest would be me 24/7, she didn’t want me being ill doing round the clock care. She also wanted to be in the hospital in case of any infections or whatever so the doctors can deal with her immediately. She didn’t want me to have the distress of that and the wait for ambulance etc and then the trolley wait and so forth. She’s had a good long think about this and said when that time comes, she wants to be in hospital and they can do all her care, bedding, meds and meals and we just have quality time together. I am overwhelmed at her thoughtfulness, car and love for me for what should be all about her in her end of life care.

Can you take him outside for some air? to the hospital cafe for a change of scene? I used to do that with my mum when she’s in hospital, I ask first if I can take her out for some air, she loves it, some respite from the ward, and fresh air.

There is no legal limit on waiting times, as the relevant Acts state that assessments, etc., should take place within a “reasonable” time. The Local Government Ombudsman states that a 4-6 week wait is reasonable. Anything over that, under most circumstances, would be considered a “fault” if a case is referred to them.

Most local authorities are claiming to be under massive pressure: as I don’t know what has changed (if anything), I can’t comment on that. But what I would suggest is chasing them by saying that according to the Local Government Ombudsman the social worker should have been allocated, in contact and completed their assessment within 4-6 weeks, so can they explain what is going on and when your life limited husband is going to be seen? Do it calmly, but make sure they get the message. No guarantee that it will help but be clear to them that you are considering a complaint.

Thank you Breezy and Charles

Good to have some support. As always with my husband he is so very complex ,this is because of a very long term disability and kidney failure. And a stroke.
From what everyone says at Rehab they are genuinely concerned about doing things safely and getting things right for him. He has mental capacity and is involved in decisions .
He is worried about the impact on me and wants to make sure we have carers . So on that front I feel people have my back .

I think it’s started to hit me how long it’s going to take for a package to be in place. I have rung social services today for update and left message. They possibly don’t get that he’s on dialysis and has end stage kidney failure. I need to be really clear as to what that means . I’m very anxious it will be such a long time. I have decided when I speak to them that if we don’t have a date for at least an initial meeting I will make a complaint. I know this is bit full on but think it’s only way forward.
He’s been in hospital this time for so long plus many other admissions over the past 4 years.
I do have a supportive and very caring family thankfully.

Hi Breezy
He had a lovely long visit from a friend yesterday . Think it really boosted him. He only sees me usually ! All visits have to be pre arranged
Unfortunately we arranged a visit with our children and their partners in the garden but he had to be taken in as he felt sick and vomited. He couldn’t sit up properly in the wheelchair that day. Upset him as he was so looking forward to the visit.
But the kids and grandchildren speak to him regularly send pictures photos etc.

He now has to be stretchered everywhere most of the time but definitely fresh air is good. I ask him often but he’s not keen. There’s a garden where he is.

Once home people can visit lots. That’s one of the reasons want him home.
Did take all the grandchildren to say hello when he was leaving dialysis few weeks back. One of the grandchildren was fascinated by the stretcher and said have you got wheels because you lost your legs. ! Made him laugh .The ambulance crews are always brilliant and I sometimes say hi if passing at the right time.
Sending best wishes

I really think that he has to qualify for CHC now.

Thank you Bowlingbun
We have first meeting with Social Worker Monday , on my own then we are going up to meet with my husband.
Social worker on the phone told me he is aware my husband has a complicated medical history.

If he doesn’t discuss CHC I am going to .

Google “CHC Pointon”. This relates to someone wanting to care for her husband at home. After a Panorama programme long ago it was agreed that CHC could be arranged for someone at home. I think some people in officialdom may be unaware of this case.

Thanks will do
Agree have mentioned various things over the years that professionals weren’t aware of scary at times how things are not known

Good luck tomorrow.
I hope you can get your husband home soon.

You mentioned that he is at end stage kidney failure.
Is there an advance care plan in place - i.e. home or hospice or hospital?
Have you checked if that is reversible to hospital if it becomes too much at home?
There might be a point that it becomes untenable and he needs to be in hospital.

My mothers GP recently had that conversation with us for hers. He recommended home with hospital option if it became too much but mother was adamant on hospital, thinking of the strain on me.
Different circumstances, we are not local to extended family and she has outlived almost all her friends.

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
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.

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.


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!