Social care package - how long did it take to arrange, in your experience?

[werdkraft]

My mum is terminally ill (leukemia) and within just the last couple of weeks she has lost the strength in her legs, so can no longer walk. She has been in hospital since last week, for various interventions, but she was desperately unhappy there. They have now let her go home, but she needs carers to come in 3 times a day. The hospital nurses are arranging this, but won't commit to how long it might take. In the meantime I will stay with her (my home is 300 miles away). I'm hoping it will be days to arrange the care package rather than weeks. Am I being over optimistic?

I'm thinking we should move her 300 miles to live with us. We have the space (downstairs room with access to a loo). DH is ok with it. Mentioned it to DM this morning and she seems to think it might be a good idea too, on balance. She said one of her consultants has suggested it too. Anyone know how easy it is to arrange? I should probably start a new thread. She'd need a formal transfer to our local haematology department, and some equipment - a hospital bed, commode, wheelchair etc, but that should be possible (they're arranging all that for her own home at the moment - expecting a delivery today). I will be able to work from home, and hopefully we would still get carers visiting too. Only downside is that her friends can't visit, but on balance it is probably best.

It's absolutely possible from a care provider/funding point of view for her to move.

Her current CCG can arrange with your CCG to make it happen. It will probably be easier for the hospital bed etc to be rearranged by your CCG when you know she is definitely moving to you.

The transfer to a different Haematology department is likely to be the biggest spanner in the works in that plan I'm afraid. I've known that to take many many weeks if not longer.

I think you will probably have to plan for her to go home first , but it sounds like that's the plan anyway?

Unfortunately as she's not actually occupying a bed. She is out of sight out of mind. No one will
Push for a package, because there is no pressure now to do so.

I have sent you a DM op x

Hatgirl, I was a family carer for nearly 20 years and have experience of the council systems and CHC systems in several regions/ CCGs.

CHC is better than the council but make no mistake, they will still work you to death if they can. In her case, she's made the classic mistake of allowing discharge without a package in place.

Be very very clear how much you can do. We had CHC when my Dad was terminally ill and they were going to limit it to only one carer each visit as my Mum was in the house and I lived next door and we had to put in writing that Mum wasn't physically capable of being the second carer and I was frequently unavailable because of work. It was fairly quick to set up - a matter of a few days as we'd been clear we couldn't have him home until it was in place.
Also be realistic of what you can do whilst WFH if you do manage to move her. And how flexible your employer is. We found that the carers didn't always turn up when they said they would - or one would turn up and we'd have to wait for the other to arrive. And district nurse/GP visits even as home visits were also difficult to fit in around working. We also had a stream of visitors who all wanted tea and sympathy providing. Do you need overnight care to sit with her- we had a combination of Hospice at Home, Macmillan and a social services carer?

It's also worth being aware that the timeframes may be impossible to predict accurately. We brought Dad home with the expectation of 7-10 days left. It was hard work even with a carer package. He actually lasted more than 3 weeks, and we just had to keep staggering onwards day by day. What is reasonably easy to manage for a week or two may not be for longer. When it was a close friend's turn a few years ago she ended up lasting at least two months longer than anyone thought possible.

@hatgirl I waited over two months for an urgent CHC funded care package because my family said they could do it short term as I was facing going into hospital if they didn’t (admittedly not terminal care)

DD works in adult social care for a local council and authorises funding for care packages. She just said that on average, a care plan takes around 8 to 12 weeks to arrange at the moment and those are the urgent cases.

I'm really sorry to hear about your Mum

Unfortunately my recent experience with my mum was not so positive. Her situation was similar in that she she had advanced cancer and was recently admitted to hospital for low sodium levels. After a week it was obvious they wanted her out to free up the bed as they said they could do no more for her.

My mum, dad and I had two meetings at the hospital. At the first they gave us the choice of mum returning home (no mention of carers) or going into the hospice. She decided to go into the hospice.

A couple of days later mum phoned us to say she could not go into the hospice as she was not within 4 weeks of dying. The hospital were pushing for us to take mum home and said they had requested carers, but due to our personal circumstances (mainly my dad being 83 with MS) we decided that a local care home down the road would be better, as we knew it was well regarded. Mum was not happy about this at first as she was also desperate to get out of hospital, but later came to accept it was for the best. She was fast tracked under NHS CHC and told she was expected to live 3 months, maybe more (she died a week later). If we had known this we could have managed at home for a week.

To add to the confusion we then got a letter from the NHS saying that they had been unable to procure a care package and that mum had agreed to go home with family support. She never said this at any point, so if she had come home we may have been struggling alone for months.

My mum had cancer for almost two years and until recently things had run fairly smoothly on the NHS, but after the shambles the last few weeks I wish she had gone privately (she had the means to but did not feel it would make a difference to the outcome).

The GP/hospital/other organisations don’t seem to talk to each other. I even had a call from the GP surgery wanting her to book a flu vaccine even though they had produced her death certificate a few days before! The excuse was “we are in a different department”. Sorry, I am getting off topic a bit and others’ experiences may be different. It is just that I can see what people mean about the NHS being in crisis.

@RubyTuesday70

DD works in adult social care for a local council and authorises funding for care packages. She just said that on average, a care plan takes around 8 to 12 weeks to arrange at the moment and those are the urgent cases.

I'm really sorry to hear about your Mum

But OPs Mum is not getting a social care package.....she is to be NHS funded by CHC