Continuing Health Care - can we move mum back home from nursing home?

[MoonUnit3000]

We have CHC in place for a local but very good care home, but DF wants to have her back at home as in his words 'he can't stand her being there any more and the stress of the situation is making him ill'.

I want to find out if it is possible to keep the CHC and to put the funding towards carers in the home and then move her home, has anyone ever done this? Or could advise on how to go about doing it?

We are due a further assessment in 4 months so am also worried about a change of setting triggering a new assessment and us losing the CHC as a friend's family lost it recently as it seems the parent didn't die quickly enough and had outlived the initial 6 months of funding even though they had obviously deteriorated!

DM has terminal cancer and some other issues including two small strokes but it seems to be progressing very slowly (already lived 7 months longer than expectations). Her needs have increased though and she is almost bed bound (sits in a chair for an hour but not every day) and is doubly incontinent, nearly blind and clearly has some degree of dementia too.

I have huge concerns that DF won't be able to cope without overnights and a number of visits a day, and possibly 24 hour care in due course as DM gets more ill, but I am struggling to talk him out of just bringing her home.

I work in adult social care and it sounds like she is probably in the right place at the moment but that it's your DF who is struggling. Could you try and drill down what is troubling him. Is it seeing his wife unwell, loneliness, struggling to cope at home etc. I would make this your focus. If you want a move then it's best to talk to your mother's social work team but ultimately they will be focused on what is best for her not DF. It's a tricky position for you to be in but you may need to do some unpicking to move forward.

Thanks blackcat, I do think he is in the right place, but also appreciate that they have been together for over 60 years and are missing each other which is incredibly sad.

I just don't know how much help they would be given at home and whether DF could cope with managing (I am guessing) different services coming in and out. Especially as we have no idea of time scales.

I am not sure how you go about organising good care at home and whether it could be arranged through the CHC, do you know if this is even possible?

Talk to the CCG (care commissioning group) they are managing and funding her care. They can tell you what is possible and what they will fund. There are people at home with CHC funding (and sometimes a combination of family care) but they won't agree to move her if it is unsafe, they will know her needs. She may be in the best place and it is awful for your dad to be separated from her but he can visit her each day if he wants whilst she still gets excellent care. It has to be right for your mum at the moment and in her best interests if she is unable to make that decision herself.

Thanks WillLoki, family care is going to be a problem due to various health issues in the wider family. It's a difficult time.

Does she want to go home? ultimately isn't it her decision, is she able to make decisions like that herself, if not does he have Power of Attorney for her health and welfare? If she wants to go home I imagine she would need a home visit to see what equipment she needs, like a hospital style bed, hoist, commode, continence service, pressure area care - it can take a while to set up a safe discharge home. She would need a capacity assessment, a care needs assessment, for her GP to agree a safe discharge home, community nurses, equipment, carers. It would be nice if they could be together again and it must be terrible being apart after so long but her safety and wellbeing are the priority in this situation.

Listen to blackcat: in reality your father is not going to be able to just ‘bring her home’ - her care needs are substantial and even if he was able to make it happen he will be completely dependent on multiple agencies to coordinate all the steps happyhammy mentioned before it can happen. It doesn’t sound as if he’s being very rational - any idea what’s driving him?

Sorry moon I'm just catching up. Your best bet is to call up your local adult social care team and have a chat. Your mum may have an allocated social worker or she may be open to one of the care teams. If you Google your local authority name and adult social care you'll find the main number. It sounds like she's in the right place but a reality check for your DF of what care at home would look like and some support for him may be useful even if they can suggest a social or support group.

If she has full CHC in place then it’s not the adult social care team you should talk to, but the nhs trust/ccg who is currently funding her placement.

To be honest - to continue being eligible for full CHC her needs would need to be at an intensity which would mean that it would be unlikely to be safe without overnight care.

Some people do have CHC funded care at home eg. Live in care or 4 calls a day etc but sadly the bottom line is that the NHS, much like the local authority, would be unlikely to fund care at home if it is more expensive than a care home.

Any move would also have to be your mums choice, or in her best interests rather than your dad’s, iyswim.

By all means do ask the CCG but this may trigger a review and the funding being removed (local authority would take over or she would become self funding depending on the financial situation).

Or perhaps you could have an informal chat with the home.

You would need to find out:

Can she be left alone
Does she need care through the night? Or just checking.
Does she need help with personal care from 1 or 2 members of staff.

IF she is expressing a strong wish to come home, and she only needs one member of staff or can be left alone, and doesn’t need a lot of care through the night then it might be feasible, but then in that scenario her needs would suggest that she isn’t eligible for CHC.

Did she get it ‘fast track’ (ie because she was in a terminal phase but has now done better than expected? Fast track is normally awarded where there is rapid deterioration and it’s expected to be less than 12 wks though there isn’t an official timeframe.

And yes, the CCG can arrange care at home - they have agencies they use, like the local authority does.

Of course your dad’s wishes are important but it is your mum who is paramount here. If her needs are being met appropriately in the care home and you are happy with her care there I think I wouldn’t want to change things. The problem with care at home is that you get a lot of different people coming and going and this may be unsettling for your mum, as well as being a job in itself coordinating with them all which it doesn’t sound like your DF will be up to, so someone else will have to take it on. At least in a care home (assuming it is up to scratch) you are dealing with the same staff and your mum will be familiar with them.
Also getting CHC is an achievement in itself - unless your mum is actively unhappy I don’t think I would want to rock the boat as they’ll find any excuse to take it off her.

Thank you all, it is incredibly helpful reading your replies. I think she was in a terminal phase but did physically better than expected, she didn't rally in any way but just the deterioration was slower than we thought it would be.

I think that situation has now changed after the stroke (possibly more than one stroke it turns out). She is definitely doubly incontinent and very confused and I am not expecting any possibility of recovery.

I think I am going to have unpick DF's issues with the care home and try and support him as best I can without moving DM.

if she has a limited life expectancy do ask about fast track funding, whether its in the carehome or at her own home if she is having to pay for any care herself.
take care of yourselves and hope you get it all sorted out

And yes, the CCG can arrange care at home - they have agencies they use, like the local authority does.

Be careful with this as from bitter experience I can tell you that the CCG will contract with the cheapest providers and the ‘care’ may be abysmal, that is if the carers bother to turn up.

I just want to thank you all for your thoughts and for sharing stories.

I have actually persuaded DF that DM should stay in the home, but he now has had a review of the CHC triggered and I fear it will be taken away (he has apparently been asked about his savings etc.).

Well that's good that dad has settled to the idea she is best where she is.

Ah I can explain the process re Fast track CHC and reviews of that if that helps ?

If DM has CHC fast track, which is for right at the end of life & rapidly deteriorating, then many CCGs are now reviewing after 12 weeks. Yes he might have triggered a CHC review if he'd contacted CCG asking if she could come home and it flagged it up to.yhem. But

The fast track CHC review is led by CCG (if no longer rapidly deteriorating) and usually involves doing a DST review - which under NHS CHC framework should include a family representative, social care rep and health/qualified nurse CCG rep. It is a complex review meeting, looking at 12 care domains whether the patient still meets CHC criteria on other grounds or not, than the fast track if the patient has stabilised.
Because patient's health whom were rapidly deteriorating end of life (dying) sometimes then live, stabilise and surprise everyone 😁, which can partly be as a result of good quality care or/ a patient rallying.

You or dad should be invited to that DST review meeting.
If DM is no longer entitled fast track CHC funding, whoever is managing mum's money would at some point be asked about savings and her assets (not the home dad is still living in), to see whether she is entitled to any funding help for her placement from the local authority (adult services) .