How to prepare for CHC assessment?

[terceira]

This is long.

MIL is having the full CHC assessment next week at her nursing home and I am hoping to go with my partner if they will let me in too. But I feel underprepared and wondering what we need to do beforehand. As an example we don't even know whether we are doing the DST or fast track. We also don't know what she scored on the CHC checklist only that she passed it. Partner is a bit crap at asking the right questions which is why I am now getting involved. All I know is that it's a nurse and a social worker (I think) doing the assessment but the nurse hasn't been involved in MIL's care. I am having a read through of the DST guidance.

MIL lives far away and before all this started we didn't see her often, probably twice a year. This is why we don't know what is going on because we are having to ask MIL about things that have happened and she is unforthcoming either because she doesn't understand what she's been told, has forgotten or doesn't want to talk about it.

She is very seriously ill with ovarian cancer, has lost a lot of weight, my guess is that she weighs between 4 and 5 stone now. She had a full hysterectomy (inc ovaries) a few months ago as her abdomen was full of fluid which had caused several falls. She is bedbound, cannot walk and needs help to sit up.

When she was in hospital my partner asked questions of doctors/nurses and didn't get answers, possibly MIL hasn't consented for info to be shared. MIL herself has always said she doesn't know/she hasn't asked/they haven't told her what stage the cancer is at and when asked if she was having chemo claimed it wasn't possible. We think this is a mixture of denial/lying/doesn't want to talk about it but it is incredibly frustrating and her lying is upsetting my partner although I have told him that she is probably very afraid and perhaps this is her way of coping. I think it is probably stage 4 and she probably was offered and refused chemo but who knows. It doesn't really matter now.

We assume she isn't going home and think she probably hasn't got long to live, but no one has actually told us. However she broke a bone in her shoulder in one of the falls and we were initially told they were doing shoulder surgery after the hysterectomy, then they weren't doing it at all and now apparently it is planned again. So maybe she has got a while to live. Or maybe it's a quality of life thing. She says she isn't in pain so that's good.

I appreciate that this is garbled and makes little sense but if anyone can advise about the CHC process or any of it really it would be a big help. I am really struggling with it all myself but am trying to be strong for my partner.

Thanks in advance.

If it's fast track because she is nearing the end of life it may be more straightforward but I wouldn't assume anything.

I downloaded the whole form myself, printed it off and filled it in as accurately as I could, according to how I saw the situation. I also need to say that I had a specialist solicitor advising us too because my mum's case was very complex and no one in the hospital even hinted that CHC existed. Luckily someone else told me. Their default position is not to award it, so you really need to stand your ground and do your homework.

You must ask more questions so that you know how she is, what she needs doing for her (ie what can she no longer do) and how it's affecting her in every way possible. It's no good being a bit timid and not asking questions so get your DP on board quick.

I did go along to meet the social worker after she'd seen my mum and the medical staff. I actually went through my form and compared it with hers, which she was happy to do, and we were largely ' on the same page'. It then went to a panel and she did get awarded CHC. Her needs were very complex but it's not a foregone conclusion that they'll award it.

There are a couple of very good websites which explain the process and how to best put your case. Do a bit of a google search.
You need direct answers to direct questions about her full state of health and prognosis. It's so distracting when you're in this situation, I know, because your worried anyway, but if you can ask to be involved and get them to explain the decision making it should be clearer. If you disagree with the decision then you can appeal.

Thanks so much that's very helpful.

I've gone through the DST form and most of it is either no need or not sure but probably no or low, with a couple of moderates/highs for mobility and cognition. But by my workings she wouldn't have even passed the checklist so there may be something that we know nothing about.

I've done some research into what happens and what to ask them and made some notes so I feel a bit better prepared now.

If a nurse and a social worker are coming then it is DST.

Honestly, my first question out of the blocks would be 'why isn't this fast track' given she is in a nursing home, bedbound and has very advanced terminal cancer.

I would not proceed further until I had an answer, they are putting you through a charade for nothing.

Fast track is a short medical report, short nursing report and then done. No checklist required.

I should add from your description she would not pass a DST but is a barndoor fast track as she has signs of being very unwell, even though she is cagey talking to you about it. It may be this cageyness and lack of clarity that has meant fast track hasn't been done.

Nobody will be doing shoulder surgery on a 5 stone bed bound woman, what tends to happen is they get listed, called for pre-op and then the penny drops that this was a very bad idea and the op is cancelled.

It might be helpful for you to speak with the care home beforehand and see if they will provide you with a copy of MILs care plans, risk assessments and medication charts, that will give you an idea of what support they are providing her with at the moment.

For example, are they supporting her skin integrity, is she being nursed on an air mattress? Are they able to support her with turning regularly - this might be difficult if she is in pain. Has she had any pressure areas?

If she is confused at times is she at risk of trying to get out of bed / falling? Are they using any bed alarms / sensors?

How are they managing her continence care? Again, is her pain well managed or causing any issues with this, if she is confused does this cause any distress around personal care? How many staff does it take? I'm assuming they are not hoisting her to use a commode. Any constipation if she is on pain medication?

Her weight is very low, my assumption is they are offering supplements, has there been any improvement or further loss? Do they feel her nutritional status is at risk, any swallowing issues? Has dietitian reviewed?

Is her communication impacted by cognition/ pain / confusion?

How's her mood (I would be pretty bloody fed up!) does she engage with any activities at the home, has she had any support around her diagnosis and been able to engage with this or been withdrawn?

Hope that helps a bit!

Although I'd also find it useful to be asking about prognosis, if your partner has POA or consent to speak with her GP it might be worth a chat with them about if they feel she is end of life (last year of) and of she is registered on the gold standard framework (which basically just acknowledges people are in last year / months / weeks and supports planning their care).

Remember “a need that is met is still a need”, so just because the nurses are doing it for her doesn’t mean the need is not there.

I would have thought that the care home did the checklist and would be able to give your partner a copy of that if your MIL has given her permission for them to speak to him. If she hasn't, it would seem odd that he has been invited to attend the DST meeting. Although you mention her cognition, in which case does he have POA?

I found lots of useful information on this website - https://beaconchc.co.uk/

During the meeting, don't be afraid to ask for things to be explained if they are not clear. The assessor/nurse/social worker may use terms (medical etc) that you don't understand but they should be happy to explain everything to you.

Thank you all, these are all great questions to ask. Particularly about the dietitian as I did notice a multipack of Fortisip in the room and mentally filed it away as something to ask about and then forgot. She says she loves the food and it does look nice and ample and she always eats it all when we are there, but we do need to delve into what's happening with her weight.

Re her cognition: she has occasional delusions e.g. in hospital she complained "they're coming in but they're not buying anything" we think this harks back to when she used to work in a clothes shop. And in the care home she thinks that the carers are very busy because they also have to cook all the meals and care for all the people that live in the houses that she can see from her window (just a normal street not sheltered housing). Her short term memory is pretty shot and she sometimes repeats things. She reminds me of my mum when she was in the very early stages of dementia but she can hold a fairly normal conversation, ask questions, is interested, remembers what you tell her most of the time.

I am cross about her cognition because she was absolutely lucid and fine in December but being bounced to care home before the operation, then hospital for the operation, then bed blocking for 38 days due to incompetent discharge co-ordinators (during which time she caught Covid) and then finally being discharged has probably done nothing for her cognition or general mental health. She was told multiple times she was being discharged and then it didn't happen. I've heard of a lengthy hospital stay making someone's dementia worse (my mum) but never of it making dementia-like behaviour appear from nowhere.

We're putting a financial LPA in place next week although the solicitor has advised it will take 3 months, I have another thread about that. Haven't bothered about the medical one as I've never needed it for my mum but she did give consent for me to know all her medical stuff a long time ago. I think MIL has perhaps been asked recently to consent and has now done so, as you say the nurse wouldn't have invited partner to the assessment otherwise.

I had to get a grip of my mum and brother before my seriously ill dad had his review.
My dad went down hill very quickly and it was clear it was terminal.
The CHC offered the best chance to get the best support and the amazing end of life care nursing specialists in place.
My mum and brother, emotionally, weren't ready to accept the swift turn of events. They unhelpfully would spin things very positively. Like 'he was very keen about his Xmas dinner' actually he nodded, smiled, tried and then was immediately ill.
'he's always been very fit, he won't want help going to the bathroom for long'
I talked them through it as just a tick box thing, to be judged on that very day, not how things were two months ago. And you could always turn it down further down the road if unnecessary.
Luckily I was there for the actual review because my brother parachuted in last minute and kept saying the wishful thinking stuff (he had some guilt) I got rid of him on the grounds that he might find it a bit emotional go have a smoke and get mum a coffee (named brand outlet furthest away) .

I 'm sorry to hear about your MIL. I thought the staff involved at end of life were highly skilled and amazing. It may sound odd but 'a good death' is a kind thing, I wish your family well.

but never of it making dementia-like behaviour appear from nowhere. Doubt whether it was “from nowhere”. More likely, there but without visible symptoms

It sounds like she has maybe had some delirium?

www.alzheimers.org.uk/get-support/daily-living/delirium

If she does have any underlying cognitive impairment such as dementia it might be that delirium does make some of those symptoms more obvious longer term.

Also please consider getting POA for health, it will be useful if she loses capacity to support with choices such as if she does remain in care and where this is provided + things like what treatments she is / isn't given. You can complete the forms yourself, fill them in online and then print them out to sign / get them witnessed. If you do it that way it will cost around £85. It will take about the same amount of time no matter if you use a solicitor or not.

www.lastingpowerofattorney.service.gov.uk/home?_ga=2.80251860.236156940.1712223566-415828215.1712223566

If it's a nursing home, the nurse who does look after her will take charge on answering the questions. They should know what they are doing but obviously it depends on the care home staffs skills. It is all based on her needs and if you aren't aware of all her needs, then really you should leave it to the staff who care for her and only interjecting if you disagree. It's in the care homes best interests if she stays on CHC funding so they should fight for you. Be aware though, if she is relatively stable, she will just be awarded FNC. CHC is very hard to get.

Assessment was today. Unsurprisingly she's not eligible for CHC but they are recommending FNC. She's not as underweight as I thought (just under 7 stone now, she has gained a lot since I last saw her a month ago) and she is definitely having a total shoulder replacement. Apparently.

The care home manager attended (she is also a registered nurse) and she along with the social worker was useful as they both pushed for High on Mobility. The nurse was trying to massively downplay it to Moderate because MIL minimised her own mobility problems until I stuck my oar in. But the High didn't make a difference in the end. She was High on a couple of other things.

Worryingly the manager said that they mostly use the hoist to move her but sometimes they use 2 carers and some sort of belt. She cannot weight bear at all, though she said she sometimes can but she is in denial/deluded. Social worker and I looked in horror at each other and SW told them off about the belt as it's unsafe and told them to stop using it.

A physio is due to see her this week partly to help support her using a commode. Hopefully he will reiterate the no belt thing.

We were still unable to get any info about her prognosis or what stage the cancer is at and it isn't on the paperwork. The hospital haven't told the care home, social services or anyone by the sounds of it. I find this absolutely unbelievable but I simply don't know who to ask now and it is possibly less pressing than the fact that she is going to run out of funds before the LPA kicks in unless we get deferred payment agreed with a charge on her house.

I got contact details for the SW who is doing the financial assessment this week (not the same one as at the assessment today) and have told my partner he MUST phone her tomorrow but whether he will or not... The family is very passive and lacks whatever it is that makes people advocate for themselves/others and get stuff done, and I am frustrated and exhausted having been up very early because of the travel time.

Thanks for reading. I needed to vent a bit.

Has she had the pre-op assessment for the shoulder?

My DM is supposed to be having one, had a date in the diary and everything. Got cancelled the week before when she failed the pre-op - and she is far far more fit than your MIL.

I am concerned that the only reason your MIL is gaining weight is that she is refilling with fluid. If she isn't having any treatment for the cancer, the fluid will come back. Gaining a lot of weight in a month is suspicious as it probably isn't fat or muscle if it has gone on that fast.

Personally as a priority I would have finding out more information about the cancer from the hospital. If MIL has any symptoms at all I would ask for a specialist palliative care referral as they will have a lot better understanding of prognosis as well as being able to manage the symptoms. You all do need to know the prognosis as a matter of urgency.

In terms of who else to ask about the cancer, you may have tried these already:

GP should have the hospital discharge letter
PALS at the hospital she was discharged from
Gynae Oncology CNS at the hospital she was discharged from - speaking to the specialist nurse is almost always helpful
Secretary of consultant whose name is on the discharge letter
Asking one of the above for the copy of her Gynae Onc MDT outcome

Hopefully one of these should work for you.

definitely get the health and welfare LPA. If she’s getting confused do it now while she still has capacity . It just makes everything easier for everyone - yourselves and the care staff - further down the line

agree it could be delirium. Sadly my Mum never really recovered from it. But was very similar to your MIL - delusions and confusion, but memory largely working fine, could remember things we told her, never forgot people’s names. Some vascular dementia’s present similarly. In contrast to my GM who had Alzheimer’s I’d say it was a blessing as she remained able to have conversations, enjoy being read to etc… through out

I just need to vent, I am not expecting anyone to comment or even read as it's just a mess that will eventually get sorted but seems unsolveable now.

We're not much further along. Solicitor has been slow doing the LPA (we needed a solicitor as there was no one else who could be a certificate provider) and MIL was "unable" to write a cheque or provide ID (we told the solicitor where to find the ID in MIL's nursing home room but she obviously just asked MIL), so now partner has to make the long trek to fish out the ID and photograph it and stand over MIL whilst she writes a cheque (as the solicitor has ticked "cheque" on the form and neither of us has a chequebook).

MIL has been evasive/useless at answering any questions re money, refers the nursing home/social services/everyone to partner saying "my son deals with all that, he's very good" and then witters on for ages about irrelevant trivia (which she's always done, so I don't think it's an attempt to mask the fact that she forgets/doesn't know things). She's also failing to understand that she is responsible for herself financially until the LPA is registered and that it will take months. We asked her whether the solicitor visited the day before we were there (there was a visit scheduled to get the forms signed), she said "oh someone came, it wasn't yesterday, was it Tuesday, they didn't do much and went away and I wondered why they had come". We were just checking that the solicitor had been and that MIL had signed it, after some probing she said she had "signed something but I don't remember what it was as I'm not really interested <tinkly laugh>" Infuriating. "Oh is not registered yet then?" No, it takes more than 24 hours funnily enough.

We ransacked her house last weekend and found paperwork relating to various accounts (she claimed to have no idea whether she had more than 24k, she does) and partner has registered for internet banking and so has been able to cancel the direct debits paying for pointless stuff she doesn't need. However he's unable to create a new payee to pay the council or nursing home without either her PIN or her old mobile phone. She claims not to be able to remember her PIN and denies ever having had a mobile phone. My partner rummaged in her handbag in front of her and found a mobile phone and charger that she's been carrying around for who knows how long. She indignantly claimed never to have seen that phone before. Unfortunately it's the wrong phone, a different number has been registered with her bank so there must have been a previous phone. There's no point even asking her as she's just not interested in helping or doesn't remember. We will have to go over to the house and ransack it again or failing that she's going to have to write some cheques.

The council has sent two invoices for her care to her (unoccupied) house (and got the postcode wrong) but the nursing home says that the amounts are incorrect and also that the council has not paid the nursing home, though thankfully that isn't our problem. The home also says she shouldn't be liable for anything before the council did the financial assessment, but I am not sure whether this is true. In every other case I've known the FA was done before the person went into the care home but in this one the FA only got done about 4-6 weeks after she went in.

We haven't found out whether FNC was applied for after she failed CHC nor who is responsible for doing so. Someone from DWP is meant to be applying for Attendance Allowance for her but they phoned my partner once from a withheld number and didn't leave their number in the message, which is fairly typical DWP. So I think I will probably have to do the AA form.

She continues to have hospital appointments re her broken shoulder but is unable to tell us much about them - she keeps saying they are doing tests but I think she's covering up that she either doesn't understand or has forgotten. It's almost 6 months since she broke it.

I've decided to step back from visiting her for a while because I am finding it so frustrating dealing with her (I am a replacement attorney so I do need to know this stuff).

She sounds like her cognitive abilities have massively declined. I know how massively frustrating it is, but try to remember that she probably genuinely can’t remember and all the “I’ve never had a mobile” stuff is not so much her covering/masking as quite possibly genuinely believing that is reality. It made a massive difference to dealing with my Mum once I finally realised she wasn’t lying to me or trying to manipulate people or cover things up. She was just living in an alternative reality a lot of the time.

it’s so hard without the LPA but it sounds like the home she is in are broadly happy so hang on in there and it’ll come together eventually

that solicitor sounds a bit useless though