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Waiting times and support package - Carers UK Forum

Waiting times and support package

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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.