Care package after leaving hospital - what next?

[MrsSchadenfreude]

My mother is currently in hospital. She went in when she had a stroke and has now been diagnosed with lung cancer. They’re only going to give her palliative care given her age (89) and frailty. She’s been in hospital for six weeks, and will be discharged in the next two weeks with a care package. She will get this for six weeks, after which she will need to self fund. She thinks this should continue to be free. What happens if she refuses any care after the initial six weeks? (She has plenty of money and could pay easily, she just doesn’t want to.)

Well if she refuses to pay for care once the assessments have been completed then she will no longer receive the care.

What impact that will have on her ability to remain living at home depends on how much she is still able to manage for herself and how much free (family usually) help she has.

That entirely depends on her capacity and ability to make informed decisions.

If her stroke has reduced her cognitive abilities then without having donated PoA, it is best interest decisions by the local authority. That might be deferred payment from her estate, might be a charge on the estate or might be a decision around continuing care funding.

If she retains the ability to make decisions, however unwise others consthem, she can do what she wants and live how she chooses.

If she has donated both PoAs foe health and finances and has reduced capacity for that specific decision, then the person with PoA makes the call.

No PoA for either health or finance. She doesn’t want anyone killing her off or selling the house from under her. No free care - I am the only close family member and I live overseas (although it currently feels like I am commuting). She has a brother who lives five hours away but hasn’t seen him for years, although he calls regularly. She currently has capacity. I am hoping she might enjoy the extra company, and having people around to help out.

Right now, with all the care she has around her, it's easy for her to ignore the facts.

When the care ends either she will be able to manage alone (short term at least), or she will realise she can't manage alone and will understand the reality of not being able to dress herself/feed herself etc and will bite the bullet and pay for care.

See how things go as the weeks go by - has the stroke had any lasting effects?

It's tough, but she may change her mind when she realises that it stops without payment- or she might not. It's her decision entirely.

What was she doing prior to the stroke and what level of functioning has she regained? How much direct care does she need?

In terms of palliative care, has she had a hospice referral? The hospices are pretty good at taking a holistic view and sorting support.

Would she consider a few hours housekeeping as a compromise?

@LadyGardenersQuestionTime the stroke has affected her speech, but it has largely come back. She has “forgotten” how to do some things, like use her mobile phone. The doctors say she can read but doesn’t always understand what she is reading. Her mobility is not too bad - she can get herself to the loo. Fortunately her home is a small bungalow, so easy for her to navigate.

We struggled with our Mum but after lots of persistence we got Continuing Healthcare funding which then paid for a care home. We asked and asked what help we were entitled to and kept bring told that Marie Curie nurses coming x3 per day was all we would get. Don't give up. The key seems to be to get the referral while she's in hospital. Start asking now and don't give up.

If she is terminally ill then you need to look at Continuing Healthcare (CHC) funding. This is where the NHS fund at home care rather than social services, and it is not means tested. They may have “forgotten” to assess for this but it should be fast tracked with her diagnosis. Accessing it can be tricky as everywhere would naturally prefer that your mother self funded. But if her primary needs are health based (and palliative care is a health need) then she should be entitled to it.

Are you sure it is 'care for six weeks?' Not rehab and up to six weeks? Sounds nit picking but you need to clarify exactly what they are saying happens when she is discharged

Social services will work with her as best they can to encourage her to continue with the care package. Social workers can be very persuasive.

ultimately though if she is adamant she doesn't want it and won't pay for it and she's deemed to have capacity to make that decision then they will stop the care package. They absolutely won't go 'oh go on then, have it for free'.

in the local authority I work for at the moment we do have an arrangement that by default works for some of the people who refuse to pay for care packages that means that as a minimum someone will literally pop in daily just to do meds as this is paid for by the NHS, they won't do any other tasks but it does act as a protective measure e.g. to make sure someone isn't lying on the floor.

if she is really at risk of self neglect to the extent there is an imminent risk to her life then she may be referred to the Safeguarding Team.

if someone decides she lacks capacity or insight into her care needs at any stage then the local authority will make a best interests decision to put the care in and charge her for it, it may need to go to court depending on the circumstances or the local authority may take the money from the estate after a person has died.

I work in an NHS team that goes out and assesses people like your Mum post discharge from hospital. The package of care will usually be reviewed by a Social Worker and your Mum assessed once she is at home to see if her needs are being met. If she is a 'self funder' then she will be given details of local care providers who she can pay directly or SS can sort the package of care with local providers. If she refuses to pay then the care will simply cease. I see this sort of thing all the time where people just do not want to pay, most of the time they quickly realise they cannot manage without the care, either that or they end up back in hospital due to complications associated with not being able to cope eg falls, self neglect etc. If she has full capacity then the decision is hers to make.

Thanks, that's what I was trying to say but you made it much clearer!

I took from the OP that the NHS weren't going to treat the lung cancer other than palliatively rather than OPs mum was felt to be in the terminal phase of her illness/ 4 core drugs etc.

fully funded continuing healthcare is for people with complex, unpredictable, intense care needs, it's unlikely that OPs mum will fit this criteria if the plan is a (up to) 6 week rehab plan for discharge home.

fast track continuing healthcare is for people who are rapidly deteriorating /in the terminal phase of their illness (i.e. death is expected in the next 12 weeks) - again, an initial rehab package would be complete unsuitable if this was the case.

CHC funding will very much depend on her needs as PP have pointed out, these are usually complex needs. If it is more social eg washing / dressing / making food / getting out of bed / medication prompting then it is most likely she will not meet the criteria.

Are you in touch with her Social Worker? That would be a good place to start and certainly raise your concerns with them as they are working in the best interest of your Mum and would certainly want to hear your concerns.

Guide to NHS CHC funding

What CHC is supposed to do and what the rationing allows are two different things. Rationing allows politicians and service chiefs to say it exists whilst many people in need fail to benefit.

OP if your mother is self funding its worth looking into private carers. The main advantage was the same people every day, staying for full hour slots if wished, often flexible about tasks and communicating effectively with the family. All of which proved impossible with agencies. I was surprised to find it was also cheaper than agencies (I had been expecting to pay more and we used the difference for some extra services).

What CHC is supposed to do and what the rationing allows are two different things. Rationing allows politicians and service chiefs to say it exists whilst many people in need fail to benefit

I think there is a huge misunderstanding about what fully funded continuing health care actually is.

it's to meet need where someone's needs are so medically great (judged by nature, complexity, intensity and unpredictability) that the requirements of their care go beyond what can be considered social care needs.

so for example washing, dressing, making and eating meals, going to the toilet etc are all needs that are met as social care needs.

but when washing or dressing someone can't be done without 3 members of staff due to e.g spasms or contractures, complex behavioural issues or careful handling required because a persons bones break or their skin tears at the slightest pressure then the complexity of that washing and dressing becomes a medical need rather than a social care need.

if a person needs some assistance to eat a meal, e.g by being fed by someone else then it's a social care need, unless they are at high risk of choking or aspiration, take a long time to feed because of e.g swallowing issues or behaviour, or their nutritional intake needs to be monitored carefully because they are losing weight with no explanation then it becomes a medical need.

if someone needs someone else to take them to the toilet, or change their pads then that's a social care need. If they are catheterised and get frequent UTIs that require ongoing nurse attention, are doubly incontinent, constipated requiring ongoing attention, or have behaviours such as smearing faeces or removing their pads then that can become a medical need.

it's not rationing, social care is the default and CHC is for the exceptional circumstances where someone's needs have gone beyond what can be considered social care and now meet the threshold for medical care.

As medical care is 'free at the point of access' in this country CHC is the funding that allows for that medical care outside of a hospital setting.

She may well be eligible for Attendance Allowance, which is not means tested. She can then use that for care..you can tell her that is her ‘free care’, but it won’t be much: £62 or £92 a week depending on her needs / prognosis.

Thank you all - this is hugely helpful. She was refused attendance allowance but this was prior to her stroke, so we are going to appeal. Lots more here to think about and I’m really grateful to you all.

If your mother has the funds/assets what is her reasoning for refusing to pay for care? Will she allow you to be POA?

Sorry to hear your mum has received that diagnosis.

We've recently been through the whole post-hospital care package thing for an elderly relative with a pre-existing complex medical condition, plus the broken bones that triggered the hospital stay.

Firstly, try to get clarity on what level of care your mum would be offered, with practical info such as: someone visits X times a day, stays for on average X amount of time and tasks in and out of thieir scope would be X.

I think your mum will be entitled to higher levels of support, but a couple of things on the default social care package surprised us, so just wanted to give these as an example, as it will be extra difficult for you to co-ordinate from abroad:

We were told we would get about a week's notice of the hospital discharge date so we could plan accordingly. In the event it was under 24 hours.

Ditto for the date the support was stopped. Luckily we had already been talking to a private care company about starting services with them, and they were able to bring the date forward, so we only had a couple of days where family needed to cover everything.

The social care support plan was for someone to come twice daily for ~30min each:
Mornings - help with first meds of the day, getting up, getting dressed, breakfast and generally set up for the day.
Evenings - help with making dinner if needed, getting undressed, into bed and set up for the night.

In reality this was extremely hit and miss. Someone would randomly turn up at some point between about 8 and 11am for the morning visit, and between about 6 and 9pm for the evening visit, so it was often completely the wrong time to help with half the tasks that were on the scope. Some of the carers were lovely and caring, some literally stayed 5 minutes to tick a couple of boxes, pretty much refused to help with anything, even though we got confirmation from the coordinator numerous times that these tasks were indeed within the normal scope, and left her in tears.

Not saying this to criticise the NHS; it's obviously struggling massively, and hopefully patients who had no family to rely on were being prioritised. But it was incredibly stressful for us, and we were only 1-2 hours drive away. I would just take the time now to research a number of options, including any potential extra NHS support, local cancer charity assistance, and private care, or househeeping, costs and start availability, so you can make some quick decisions later if you need to.

Could you look at hospice at home care? If she is in palliative care then you can apply for continuing health care, do you have a local hospice or could you speak to a MacMillan nurse at the hospital?

It will potentially save much complicated negotiations later on if she can be persuaded to donate POA in case of a future loss of capacity. It needs explaining that it’s only effective post loss of capacity and only for decisions she cannot make with support.

Phrased as having someone she trusts to know and respect her wishes acting for her rather than clinicians often helps with understanding the benefit for her. Everyone should have one, not just the elderly, in my opinion.

@hatgirl thank you for that summary of CHC. I have been completely baffled by it and wondered whether it was worth applying for my mum but I can now see the difference between the 24 hour care she needs and the medical care she doesn't!

Going back to the OP my mum was assessed as needing 24 hour care which she did not agree with. She was also assessed as having capacity to choose whether or not to go home. However she took the advice of the social worker and agreed to go into a home "for a while". So even though she didn't see the need and could have refused to go she was persuaded.