Mum has been in hospital six weeks and is now stuck in limbo

[nellen]

Hi my mum has dementia age related macular degeneration and arthritic knees. She was taken into hospital 6 weeks ago with pancreatitis - that's is cleared up but since then she has got several infections and reduced kidney function. She is now fit for discharge although she needs time to build her strength up and the social worker says she cant go back to her sheltered housing flat with carers as there not enough care, so then they decided that she would be be sent to a local hospital for rehab as her mobility is reduced and she's weakened, but they turned her down as they thought her rehab potential was poor, so the next place was an frail elderly ward at the local hospital, that was declined because she isn't now medically sick. The latest thing is for her to be assessed by the hospital social work team with a view to a spell of respite nursing in a carehome before deciding what mums needs are next. Even the discharge coordinator says she doesn't know what to do with my mum
So six weeks after admission and going into her 7th week my mum is still in hospital and the way things are going I can't see when she'll be out of hospital

I keep ringing up the discharge coordinator, speaking to doctors, speaking to the social work team. I try to see her every day despite it being being a 100 mile round trip and I keep an eye on things. I feel like I'm banging my head against a brick wall. The social work team seem to be experts in fobbing off. The referral to them was made Tuesday and she was allocated to a social worker by Wednesday, they say they respond in 3 days and today, Friday when I rang up to check on progress, they'd hadn't done anything and when I said when will you see my mum I they didn't know.
I'm fed up, I'm tearing my hair out. My mum is confused and disorientated, she's getting losing her ability to do things for herself. The nurses and auxiliary nurses like her and are great with her. What can I do ??

 

[Gigglemore]

Sorry, can't offer any useful advice except perhaps could you find out who is in charge of the social work team and contact the manager directly - or send an e-mail to the Chief Executive expressing your concerns?

If she will be self-funding, is there a nice home near you which could accept her for a period of respite?

The situation sounds so stressful for you and it is terrible to think that your mother is rapidly losing her "daily living" skills because of what seem like admin failures. Hope you get a successful resolution very soon.

 

[susy]

Sorry this situation has occurred. I would think that the best place for your mum would be a care home with physio input. The physio would instruct the care home as to what to do and the care home do their best to carry it through.

 

[nellen]

Thank you both for your replies . I slept really badly last night as I woke at 4 with it going round and round my head. I'm trying not to think about it too much this weekend as I'm getting myself in a state trying to think of ways to galvanise people to get a move on.

I think I'm going to get a meeting with the consultant on Monday and lay it all out to him and ask him to put pressure on people to get things moving for my mum. Surely they don't want elderly people bed blocking if they can help it??

My mum is fully funded but I'm worried that the longer she's in hospital it will affect her payments does anyone know about this?
Nell

 

[Sharonk43]

My dads recent hospital admission

Hi there, although i didn't experience the same problems as you are having with your mum i had to fight tooth and nail to get things done and make sure that my dad was discharged to a safe place. The best way to deal with any problem you have with a hospital and the way they deal with things is to submit a complaint to PALS(complaint dept) as soon as you start to show that you are not going to accept any of the fobbing off etc and that you will take a complaint as far as you need to they seem to get their butts in to gear.

I hope you get things sorted

 

[canary]

Thank you both for your replies . I slept really badly last night as I woke at 4 with it going round and round my head. I'm trying not to think about it too much this weekend as I'm getting myself in a state trying to think of ways to galvanise people to get a move on.

I think I'm going to get a meeting with the consultant on Monday and lay it all out to him and ask him to put pressure on people to get things moving for my mum. Surely they don't want elderly people bed blocking if they can help it??

My mum is fully funded but I'm worried that the longer she's in hospital it will affect her payments does anyone know about this?
Nell

I cant see that it would affect payments. In fact I would have thought that she would be eligible for a 6 weeks re-enablement scheme payed for by the NHS.

 

[nellen]

Thanks Sharon and Canary.
I am a bit worried that if I make a complaint it might jeopardise how they treat my mum and I will have to work with the social workers to get my mum discharged to the best place for her. I am going to ask the doctor to put pressure on the social worker team and also ask to speak to a senior social worker on Monday when I go to the hospital

How do I find out about the 6 weeks re-enablement funding?

 

[canary]

Thanks Sharon and Canary.

How do I find out about the 6 weeks re-enablement funding?

The SW told me it was happening for mum after she was in hospital following a TIA, so I would suggest asking SS about it.

 

[Pickles53]

I cant see that it would affect payments. In fact I would have thought that she would be eligible for a 6 weeks re-enablement scheme payed for by the NHS.

I don't know what benefits your mum gets, but I seem to remember that you are supposed to notify DWP if a person receiving Attendance Allowance goes into hospital or other residential placement like a rehab centre or temporary care home respite bed and this may apply to other benefits. Wouldn't be a bad idea to give DWP a call just to check.

http://www.nidirect.gov.uk/hospital-stays-and-your-benefits

 

[canary]

Ah, possibly lost in translation pickles.
I wasnt thinking about benefits - I thought it meant CH fees

 

[Spiro]

June Andrews, Dementia The One-Stop Guide

Have you considered buying June Andrews, Dementia The One-Stop Guide? It covers all the situations and problems that you can encounter as a carer of someone with dementia, including hospital admissions and how to make a complaint. She also as a website. http://juneandrews.net/

Hospitals are not good places for people with dementia.

Regarding Attendance Allowance payments, you need to contact the DWP. The "twenty-eight day rule" means it should have been stopped, as she's been in hospital for six weeks.
http://www.ageuk.org.uk/documents/en-gb/factsheets/fs34_attendance_allowance_fcs.pdf?dtrk=true

As the Care Act is now law, I would suggest you contact Age UK re any funding queries.

Reablement (provided by the NHS), is free.

 

[nellen]

Update
Thanks v much for the info about the book I got it this morning and it's a revelation - just what anyone with a relative friend loved one with dementia should read

Yesterday the doctor recommended 24 hr nursing care for my mum and a Physio to see if my mum can be helped to walk. Social work team are noticeable by their absence and I got a phone call saying they'd be "onto it" tomorrow (today) pigs might fly

I went into the hospital today intending to talk to PALs and the doctor. PALS told me to talk to the sister or ward matron, and the doctor was covering on another ward for a colleague on holiday.
My mum was confused, calling out, trying to pull her catheter tube out and had refused to eat or drink, she was saying she wanted to go "upstairs to bed" as she was very tired having "been in town shopping all morning" they've taken bloods to check for another UTI
On a good note the Physio had got her walking aided 4 metres today BUT they say that this makes her a candidate for reablement but while she's got an infection she can't be considered for discharge to anywhere - so it's catch 22. I really don't know what to do, she is stuck in limbo
I'm getting an appointment to see the ward sister tomorrow - perhaps she can help progress things for my mum