CHC-Advice please - what should Jim want?

blossomhill_2

I know there is another thread on CHC but I don't want to hijack it.

I have an elderly relative with complex medical conditions. They are about to be discharged from rehab and the therapists find him quite able compared to other patients with similar conditions.

The relative, who I will call Jim for shorthand on here, has already tried living at home with carers popping in through the day but had a medical emergency when on his own and now doesn't want to live alone, especially as that happened when he was more well than now.

He owns his house and has some modest savings.
The choice appears to be self-funding of either 24/7 carers or care home.

I know we can ask for a CHC assessment but my concern is that the therapists take a patronising view that he could do more if he tried - he can't! When one condition is not too bad and he attempts to do more, one of his other conditions or medication side-effects kick in, and in my opinion leads to confusion and fatigue.

One doc would like him to have anti-depressants but he has adverse reactions in the past so that's a no-go; his psych collegue has assessed him as not depressed.

I overheard the nurses trying to summarise his situation at ward handover and they coudlnt even agree among themsleves, they were all over-talking and shouting each other down, like I say, he is complex

Thanks for reading this far...I will get the point...my point is, what would be a trigger for him getting CHC - do we want him assessed as medically well, or fully rehabilitated or what?

I am concerned that if he pays for 24/7 care because he doesn't feel well enough to be alone, and they assess him as only needing occassional care because he can complete physical tasks (and probably social care only) he will have to foot all the costs himself.

Farway

Is Jim ex services?

Possibly is given his likely age, maybe did National Service or even war call up?

If so maybe an ex services charity, such as SSAFA or British Legion could help here?

Does not answer your question directly I know, more of another avenue to explore

Savvy_Sue

From reading the long CHC thread, it seems to me that you need to be practically dead in order to be eligible for it, or at least to get it without a massive struggle.

I'm going to make a couple of alternative suggestions: sheltered or very sheltered housing, or the kind of alarm system which triggers if he has a fall (don't know if that's what's likely to happen).

Because the transition from living alone and more or less independently to a care home is quite a large one: a friend of a friend lost her sight very suddenly, and went from 'thinking about' to 'living in' a care home quite quickly. So from choosing what time to get up / dress / eat / go out / come home / go to bed, she found herself with set times for EVERYTHING. Would your relative be happy with that?

Sheltered or very sheltered housing means living alone, but with others around, and with help at hand.

And the alarm systems mean you can do that from the privacy of your own home ...

smilelols

Hi Blossomhill
Am really sorry to hear about 'Jim'. Heres some advice I hope might help. Yes, please ask for a checklist to be completed by the nurses working with him so he can be referred for a full CHC assessment. Even if he doesnt look like he meets the criteria for an assessment for the checklist, you can detail the reasons why you would like one completed and the PCT will need to arrange one (its in the guidance but I dont have one with me to hand to quote the section about this).
In terms of services and possible options, there are lots of things to consider before looking at full time residential care. Not all options are available for all areas, but social services should be able to advice further (nb also ask for a referral to social services). Here are the other suggestions: -
- full OT assessment (both for equipment) and a functional assessment of skills etc (they'd take into account his competing needs and how they impact on daily living etc)
- consider a homeshare type scheme. This is where in exchange for free accomadation they agree to do about 10 hours work (not personal care a week).
- telecare (assisted technologies). There is loads of different equipement etc out there, from prompts to taking medication to falls sensors etc
- live in care is an option, but how would he feel about a carer living there all the time

Moving into residential care is a big decision and where ever possible it is 99.9% of the time better for someone to stay at home if possible (the outcomes of people moving into care isnt great - there is research that says on average people die within 2 years of moving into residential/nursing care)

Take care and hope this helps
smilelols

smilelols

Oops, also forgot another possible option - there are extra care housing services available. Basically you buy a flat in the complex and there are staff on site 24 hours a day. They come in when you need them, but you can call for support if needed.

Savvy_Sue

smilelols wrote: »

Oops, also forgot another possible option - there are extra care housing services available. Basically you buy a flat in the complex and there are staff on site 24 hours a day. They come in when you need them, but you can call for support if needed.

I think that's what I'd call 'very sheltered housing'.

margaretclare

So from choosing what time to get up / dress / eat / go out / come home / go to bed, she found herself with set times for EVERYTHING. Would your relative be happy with that?

Well, I know that I wouldn't, for one!

At our church we've had people who were long-standing members but then went to live in a care home. They couldn't come to 11 am Sunday service because 'lunch was served at 12 midday and if they came to church they'd miss it'. Yet, if you go into any care home they'll have a 'mission statement' on the wall in the foyer saying something like 'this is their home, they can do whatever they want to just as they would have done in their own home'. Being forced to eat lunch at midday when you'd prefer to be out a bit later, stay for the last hymn and maybe a cuppa and a bit of socialising afterwards, doesn't seem very 'home-like' to me!

Also, how about being forced to get up at 5 am because 'night staff have to get a certain number of them up before the day staff come on' and they're then plonked in front of the TV set to await breakfast. And while we're on the subject of breakfast, nowadays DH and I eat quite differently now from what many people eat. When we go away we like to stay in the kind of places that have a buffet-style breakfast as they do in Germany. If I ever go into hospital again that's going to be difficult because all you get is cereal in little packets, and bread! We like to start the day with protein, usually an egg in some form or other.

I could go on...

blossomhill_2

I think we are sure it needs to be a care home now, just need to know what criteria would get him CHC. I think the term used above of "competing needs" was v helpful. Also it's no good being able to do something early in the morning when you are not tired if it is a nightime task!

Errata

Does Jim's area have any supported living places. To explain and demonstrate: recently several purpose built blocks of studio flats have been built in which people live independently but flats they are also staffed 24/7 by experienced healthcare workers to assist, sort out emergencies etc.
CHC seems to be easier to obtain in some PCT areas than others. My stepdad was turned down for it, despite the fact he was already living in a care home and dying of cancer which killed him two weeks after he was turned down for CHC. He also had several co-existing health problems.

blossomhill_2

margaretclare wrote: »

At our church we've had people who were long-standing members but then went to live in a care home. They couldn't come to 11 am Sunday service because 'lunch was served at 12 midday and if they came to church they'd miss it'. Yet, if you go into any care home they'll have a 'mission statement' on the wall in the foyer saying something like 'this is their home, they can do whatever they want to just as they would have done in their own home'. Being forced to eat lunch at midday when you'd prefer to be out a bit later, stay for the last hymn and maybe a cuppa and a bit of socialising afterwards, doesn't seem very 'home-like' to me!

I agree its not homelike but having run a residential home myself, I know that some residents kind of institutionalise themselves and feel very attached to the mealtimes, even when we introduced ready meals that they could ask for at any time, our youngish residents still stuck rigidly to the set mealtimes, inventing all sorts of reasons like "the staff wouldn't like the kitchen untidy after they had cleared up" which was nonesense as most of them did their own washing up anyway.
The evidence was there that it was fine to be flexible, because we had a couple or 3 who worked and one who liked late nights out and came in at any old hour - all happily chose and enjoyed a meal whenever suited them, but the other residents still imposed their own "rules".

And my own mum imposed her own Sunday lunch rule and missed out on many a day out because she wanted to stick to her Sunday lunch routine even though we tried to convince her she could make a mid-day roast on any of the other days of the week

monkeyspanner

Sorry to hear about Jim. Here are a few comments that I hope you will find useful.
- CHC funding is available in any setting including your own home.
- It is awarded if the persons primary need is medical rather than domestic.
- Consideration will be given to the complexity of the medical conditions.
- If the person has cognitive or behavioural problems that can help getting an award but severe dementia does not guarantee an award.
- A number of different aspects of health are considered and rated on a scale up to severe. Although there is no fixed boundary I think you would struggle to get CHC funding if there was not at least one severe and say 3 or 4 high ratings across the fields. However, I would have to say most people struggle to get CHC. I have even heard it dismissed by nurses in terms of "oh don't bother with that you have to be at deaths door".
- Assessments should be carried out by specially trained medical staff normally called nurse assessors. So although they might consult therapists it would probably not be carried out by them.
- The first line checklist is supposed to be lenient so that all possible candidates make it through to the full DST assessment. But this is not always the approach taken.
- Most checklists are carried out in hospital by the discharge team but the full DST assessments are carried out by staff run by the PCT.

You don't give much detail of Jims conditions. Has he considered some form of assisted living? My MIL spent some time in methodist housing association sheltered accommodation which was more like a hotel (Travelodge Travelinn). She had a small flat (lounge bedroom kitchen and bathroom) and access to a lounge dining room and communal areas. There was also an in house daily care arrangement for those people who needed assistance. I believe the cost of the accommodation was about £125/week, carers and meals were extra.