24 hour care needed at home - SS pushing for NH - not sure why?

[Wibblypiglikesbananas]

Hi - I really hope someone out there can help. DF was admitted to hospital 3 weeks ago with a stroke. It turns out it wasn't actually a stroke, and he has an inoperable, incurable brain tumour. He is early 60s and has been given just months to live. He is paralysed down one side of his body and increasingly confused. In the blink of an eye, he's gone from having just retired and being perfectly active, to a shadow of his former self and not being able to live alone.

So - we have worked our way through SS/Macmillan/CHC/OH/Physio meetings this week. Both OH and Physio say he requires 24 hour care. He is currently in hospital and won't be discharged until this is sorted. SS say he doesn't need 24 hour care. As a family, we would like him to come home, with a care package in place, and this seems possible to an extent. However, there seems to be a real blocker re the nighttime care and they are now pushing for a NH, which we and, most importantly, DF don't want. We could pay for nighttime care privately and it may be that that is what we end up doing. However, how can it be that 24 hour care is stated as necessary by medical experts and then SS deny the need for it? I'm still trying to get my head around the ramifications of DF being defined as in need of social vs medical care, though it must be medical care as he is not a well man and his condition can only worsen. At this stage he is too well to go into a hospice.

Any advice re nighttime provision would be really appreciated. I have a young family and live overseas, DBs live at the opposite end of the country. SS keep talking about family involvement but there will be very little we can do on a daily basis. TIA.

Not really my area of expertise so just a quick thought - didn't want to read & run - does/did the MacMillan nurse at the hospital have any input for the assessment and whether he can go home & have 24 hour care? Surely SS should not be overruling medical professionals' opinions.

It's so hard to ask all the questions you need to ask in these meetings. Just don't be afraid to explain very firmly - & repeat ad nauseam - to SS that you just cannot provide family support, & don't let them force you into a corner. And don't let them discharge him until you are happy that the right things are in place. Maybe ring Age UK for advice? Their helpline is 0800 169 6565

Continuing HealthCare checklist is here - this defines whether or not someone is eligible for fully funded nursing (i.e. medical) care, rather than social care.

So sorry about your dad & good luck

Sorry to hear about your Dad. There might be a couple of reasons for the mixed messages:

It might be that, despite needing overnight care, that the SS team simply can't provide it. It is cheaper for someone to be looked after in a nursing home if they have 24 hour care needs than to pay for it in their own home and they just don't have the budget. Where I work it isn't possible to get night care at home unless it is very short term - ie just a couple of nights during a crisis situation. Sometimes charities can provide some help overnight but it depends if they actually have anyone available and it won't be for long either.

Also, bear in mind that carers are not nurses - they can keep someone clean, empty catheter bags, turn them in bed etc but they can't do anything a nurse needs to do, like administer medications or suppositories for example. If he is likely to quickly deteriorate then he may well need a qualified nurse at night either now or in the near future and in those circumstance, unless you or he can pay for a qualified nurse (very unlikely to be one available anyway) then he would need to be living somewhere where a nurse is available 24 hours a day, such as a nursing home. It would be worse to send him home for a short time and then uproot him again soon afterwards when he is very ill to another location - so sometimes thinking ahead to where he needs to be 'worst case' may be the best option. It would be worth having a frank discussion with the staff looking after him to clarify whether they feel he does/will need qualified nursing care overnight, as this may be where the confusion is coming from. If he does need nursing care, then it will almost certainly need to be in a nursing home.

Hi - thank you both for your messages, Ping - I have read your posts and hope that you are ok. It's not easy, is it?

We were told earlier in the week that he'd be eligible for fully funded medical care. DB has spent the time he hasn't been at the hospital this week modifying DF's house, buying a wheelchair, organizing a commode etc. Now it seems fully funded care isn't going to happen and they're pushing for a nursing home. This is completely at odds with what DF wants and what we as a family understood would happen. I'm also going to be pretty pissed off if DB has ordered a stairlift etc for no reason if DF is now not going to go home.

There seems to be lots of confusion and, dare I say it, lies... Fast track discharge was agreed as far as we knew and then that's been changed. CHC was meant to be in place and suddenly it isn't. DF's physio has been amazing and is arguing strongly for home care for him. The LA do seem to have provision for this - in fact this was first suggested at the MDT on Monday. They just don't seem to want to pay, particularly for the nights.

I'm feeling quite despondent as I get the impression that no one (apart from the physio) really gives a shit. I feel so bad for people who don't have family to advocate for them in a situation like this. DBs and I are pretty clued up and we are still struggling. It's a minefield of bureaucracy and political buck passing from what I've seen so far.

On a positive note, DF is currently blocking a bed in the hospital he's in now. We as a family won't help with discharge and he can't be sent home alone, so he'll be there until something changes. This gives me a small beacon of hope. Talking of nursing homes, of the three local to DF, two are over 65 only and he's younger than that and the third is in special measures due to patient neglect. Hardly an encouraging sign...

Kirsty - as DF now has a short life expectancy, the plan was to move him home and then into a hospice for the very end. We have also been trying to look into respite care at the same hospice and also hospice at home style care. Again, none of the agencies appear to talk to one another and messages are mixed. The hospice he would go to is amazing and my next port of call is there for further advice.

Hi

As mentioned, overnight care tends to be short term respite. With regards to care needs, 4 visits per day is maximum - and these would be carers, not nurses. I worked in district nursing 10 years ago and we had one patient we visited twice a day and she then had a visit from the evening staff also but this was fairly unusual and she lived with family. DN services and now also far more stretched sadly. Would it be better for you DF to consider a nursing home near to your brother's home? At least your DB could then visit a lot more often and your DF would have more family support - the nursing homes might be better near him also.

Sorry you are going through this, your experience of finding it all bewildering is not unusual, sadly. Is the macmillan nurses not being more helpful? Is he having any input from palliative care nursing team? They tend to be very good.

Hospice care is generally superb - they might have a palliative care team at the hospital as well, who can speak with the ward MDT as well as the team who look after people once they are at home. Def worth a call.

Funding care is such a nightmare, and with budgets being cut all the time it's only getting worse. If he gets CHC funding for his nursing needs then it comes from NHS budget not SS but even if he is Fast Tracked it can take a while. There are a lot of boxes to tick to get CHC status and applications can often be rejected or more information requested, so it may be that they submitted the application feeling it was a sure thing but then found it got rejected, so that may be why you were told one thing and then it changed. It can be re-evaluated as his needs change though.

Funding night time care is very unlikely to come from SS and even for CHC funded patients there would need to be very clear documented evidence/risks of serious implications if he was without it. It is rare to get it. And, depending on where you are, it might not be possible to get even if you are able to agree it (or pay privately) - you need to have a person who can do it. I work in a rural area and sometimes you just can't get care - there is no caere to do it in that area.

I hope you get some clarity soon.

Thank you again for your insight. It's really reassuring to know we are not the only ones finding the process confusing.

I take the point about nighttime care not always being available. It does sound like a luxury. However, why promise it and then go back on that promise?! I feel like my dad has been given false hope and that the only thing keeping him going right now is the thought of going home. A home would kill all hope and with that, I suspect him even sooner than we expect at present.

My brother has another meeting with Macmillan tomorrow so hopefully that will bring something more helpful. I have also spoken to DF's former employer and I think we are going to be able to commute his pension so if it really came to it, we could pay for round the clock nursing care at home ourselves. I'm loath to do that to be honest as we firmly believe dad should be entitled to CHC funding but I'm also aware we don't have lots of time and in the time he's been in hospital, dad has caught a cough/sore throat, had a vomiting bug and this morning he fell out of bed as he forgot he can't use one leg any more.

I'd heard that dealing with any kind of care agencies was hard but I'm shocked (maybe I was naive) at just how hard it is.