HELP!!! Chc assessment in the morning.

[sue31]

Honest to God if dealing with dementia wasn’t hard enough it’s the “professionals” that are pushing me to my absolute limit!

Mum was discharged from hospital to an assessment bed in a local care home on Tuesday afternoon.
She has dementia and also a 7cm calcified aorta aneurism in her abdomen - which it took the hospital 3 weeks to find by finally doing a much requested Xray due to the pain she was in - it took a threat to get that done!

The hospital said they were applying for DoLs when she was admitted mid December, but I’ve not had any further info on this. They have not devised any care plan either that I have seen.

In fact they stopped her reflux meds which has resulted in her being unwilling to eat at all.

The staff at the home are different everyday so I’ve not been able to pin anyone down for information there.
I have no idea who the resident GP is & mum hasn’t seen one there as yet,

On Friday someone called me & said she was scheduling the CHC assessment for 11 am Monday morning. It would be her - no idea who she is as never had any contact with her, myself and ‘nurse’. (No name given) from the home.

I do not have welfare LPA as it would take too long to apply for and I honestly don’t think I would get it in time for it to be if any use.

I’m really not happy, how do I stand with challenging the fact not one of them actually knows my mother? And the fact they do not have any detailed information for her?

 

[MaNaAk]

Good luck!

I don't have any experience of this but have you looked at the CHC Thread at the top of this section of the forum? Hopefully someone will be along soon with some advice.

MaNaAk

 

[Kevinl]

Continuing Health Care (chc) is free as it is health care not "social" care for want of a better expression but as far as I know chc is for free, many on here would envy you for getting it, free care for your mum.
It might be different for me as a man who cared for a woman, maybe I wasn't expected to be able cope, maybe I just live somewhere the care system works better for people with AZ, don't know, but I didn't need to ask, just help turned up on the doorstep.
No secret I caught a virally infectious brain disease a while back (viral encephalitis) and was out of the game for quite a while, my strawberry blonde case worker still comes round for a brew even now.
Seems the more you (as the carer) engage the less they do, just be honest and be prepared to say you'll walk away, as I've said before, it's like poker, it's ugly but to get her what she's entitled to free play your hand, bluff if you have to, nothing to lose but her entitlements, free chc care.
K

 

[nita]

@sue31 - it will be the checklist they will look at first to see if she could meet the criteria for the DST (decision support tool). The home would have the discharge letter from the hospital and the carers would have been writing notes on her condition each day so there would be some evidence for a CHC assessment. Even thought you don't have POA I assume you are her next of kin and have been visiting and involved in her care in hospital so you can provide the input, including what you've said above. It does sound as if her medical condition is serious and complex so she may stand a chance of being awarded CHC. Have the home reinstated the lansoprazole or whichever acid reflux medication she has? Have you spoken to the care home manager to find out what is happening?

 

[nita]

It might be useful for you to take a look at the thread that @MaNaAk mentioned. This is the link:-

Best not to get too bogged down in all the detail (there is a lot of it) and just look at the checklist initially.

CHC (Continuing Healthcare) support thread

It's obvious that there will always be members caring for a person with dementia involved in trying to get CHC for that person and we know that this is often extremely difficult, for all sorts of reasons. It's also the case that over the years there have been a number of threads on topics that...

forum.alzheimers.org.uk

 

[Alberta23]

Oh Sue 31., this is awful for you and your mother. My heart goes out to you both.
Re LPA you can only apply for this as an individual (your mum) and only when you have capacity to be able to nominate a person to be your LPA. So your mum would be unable to do this now if she has Dementia. So you are too late to do anything about that. So save your energies for things you can influence.

However, as her next of kin, you have complete (and equal) say over your mums care. So although professionals may have views, you are in a position to fight your mums corner and be fully involved in her care plan at all times.

So go to the meeting and feel confident to state your case. Equally.

Get the name of the GP at the meeting. You can contact them yourself afterwards to ensure everything is taking place properly and quickly. Get a list of your mums medication, and ensure she gets it.

If your mum is not eating, that is serious. Old frail people need food and water. So the Care Home, Nurse, GP all need to be finding ways of giving your mum food and water asap.

Your mum will be disorientated being moved from place to place. She is vulnerable. You are right to be concerned.

Professionals make mistakes, they are human like the rest if us, so don't let people play the status game. We are all equally responsible for our relatives. She has not been sectioned. She is in a care home. Care homes are 'homes'. A persons home. Staff are there to 'look after' residents, not take over and push relatives out. You are an equal partnership. There to give your mum the best care that she needs.

Fight her corner, stand your ground. You are her next of kin. Dont let anyone take that away from you. Dont be fobbed off. Your mum needs you.

 

[sue31]

Oh Sue 31., this is awful for you and your mother. My heart goes out to you both.
Re LPA you can only apply for this as an individual (your mum) and only when you have capacity to be able to nominate a person to be your LPA. So your mum would be unable to do this now if she has Dementia. So you are too late to do anything about that. So save your energies for things you can influence.

However, as her next of kin, you have complete (and equal) say over your mums care. So although professionals may have views, you are in a position to fight your mums corner and be fully involved in her care plan at all times.

So go to the meeting and feel confident to state your case. Equally.

Get the name of the GP at the meeting. You can contact them yourself afterwards to ensure everything is taking place properly and quickly. Get a list of your mums medication, and ensure she gets it.

If your mum is not eating, that is serious. Old frail people need food and water. So the Care Home, Nurse, GP all need to be finding ways of giving your mum food and water asap.

Your mum will be disorientated being moved from place to place. She is vulnerable. You are right to be concerned.

Professionals make mistakes, they are human like the rest if us, so don't let people play the status game. We are all equally responsible for our relatives. She has not been sectioned. She is in a care home. Care homes are 'homes'. A persons home. Staff are there to 'look after' residents, not take over and push relatives out. You are an equal partnership. There to give your mum the best care that she needs.

Fight her corner, stand your ground. You are her next of kin. Dont let anyone take that away from you. Dont be fobbed off. Your mum needs you

 

[sue31]

Thanks for your responses everyone,

That was a long 90 minute teams meeting.!

Thankfully I got a lovely lady doing the assessment, and I only disagreed with 2 scores the home assigned - but as I pointed out she has only been with them a few days and they have not yet had the opportunity to witness some aspects of her behaviour and she is yet to see the homes GP.

She had 2 x A,
3 x B. and
7 x C - one of which was close to a B tho.

This was noted by the social worker, and will be picked up on in the next assessment on 1st February.
So now we move on to the next stage - so I’ll no doubt be spending hours reading up on that so I can do mum justice, get her exactly what she needs.
And fingers crossed it’s the same lady that chairs the next one!

 

[Kevinl]

Well done you.
K

 

[sue31]

Well done you.
K

Thank you! So relieved that bits over, was no where near as bad as I imagined but really glad I’d prepared notes, downloaded a copy form and scored it myself with relevant points highlighted before hand.

 

[Dave63]

Hi @sue31, glad the checklist assessment went well. With 2 x A's your mums case should automatically progress to a full MDT assessment. This can take a while to arrange so in the meantime it's important to focus on ensuring her medical notes and care plan at the home are kept up to date. They will be the main focus of the MDT for proving there is a primary health need and I can't emphasise enough how vital they are within the process.

Is your mum currently self funding or is she LA funded?

 

[sue31]

Hi @sue31, glad the checklist assessment went well. With 2 x A's your mums case should automatically progress to a full MDT assessment. This can take a while to arrange so in the meantime it's important to focus on ensuring her medical notes and care plan at the home are kept up to date. They will be the main focus of the MDT for proving there is a primary health need and I can't emphasise enough how vital they are within the process.

Is your mum currently self funding or is she LA funded?

They have already scheduled the next one for 1st Feb.
If she fails to get the CHC she will no doubt be self funding for a while as she has a bit over the threshold. Guess that’s just the next hurdle.

Good point on the care home notes as mum almost collapsed Sunday, me holding her up while 2 staff raced for a wheelchair & at the meeting yesterday that information was missing when the nurse referred to that days notes.
Hospital records are wrong too, they stopped some medications while she was in there - no reason, recorded her height & weight wrong - the list from there is never ending & big complaint already gone in. Duty of care in the hospital is extremely poor!
Off to see the visiting GP at the home at 2 today - notebook in hand!

 

[Dave63]

They have already scheduled the next one for 1st Feb.

So the MDT date was arranged the same day the checklist was carried out? As far as I know that's unheard of. Usually the checklist is carried out by the care home or social worker and then forwarded to the ICB who put it into their pile of things to do queue before arranging a date. At least that's how it normally happens in England, it may be different in Wales, Scotland or N. Ireland?

My second thought is it only gives you, the home, the social worker and the CHC nurse assessor twelve working days to pull together all the evidence required to adequately carry out an MDT assessment. Like several others on the forum I've been through the process and getting all the required information can be an issue especially, as you've pointed out, some of the information is incomplete or missing. The MDT will look at the last three months of records to assess needs, although some ICB's have been known to only request 4-6 weeks. Either way that's an awful lot of information to gather.

 

[sue31]

So the MDT date was arranged the same day the checklist was carried out? As far as I know that's unheard of. Usually the checklist is carried out by the care home or social worker and then forwarded to the ICB who put it into their pile of things to do queue before arranging a date. At least that's how it normally happens in England, it may be different in Wales, Scotland or N. Ireland?

My second thought is it only gives you, the home, the social worker and the CHC nurse assessor twelve working days to pull together all the evidence required to adequately carry out an MDT assessment. Like several others on the forum I've been through the process and getting all the required information can be an issue especially, as you've pointed out, some of the information is incomplete or missing. The MDT will look at the last three months of records to assess needs, although some ICB's have been known to only request 4-6 weeks. Either way that's an awful lot of information to gather.

It was me, the carehome floor manager for mums unit and a RGN I believe. She is sending me through a hard copy via post so will check then.
I don’t recall her saying what the actual name of the meeting was but she definately booked it in for 1st feb, maybe it’s just a review of the one yesterday. Asking the xarehome is difficult. Never the same staff either.🤷‍♀️🤦‍♀️

 

[sue31]

Hi @sue31, glad the checklist assessment went well. With 2 x A's your mums case should automatically progress to a full MDT assessment. This can take a while to arrange so in the meantime it's important to focus on ensuring her medical notes and care plan at the home are kept up to date. They will be the main focus of the MDT for proving there is a primary health need and I can't emphasise enough how vital they are within the process.

Is your mum currently self funding or is she LA funded?

Just had email notification that the ICB will be holding the teams meeting on 2nd Feb.
I’m a bit shocked how quick it is, as I was told initially 4 - 6 weeks, it will be under 3 weeks.
We are based in Kent.
Is this odd or normal?

 

[Kevinl]

When the "system" does kick in it can be quite good.
Just have to know where to kick it, looks like you hit the spot, so again, well done you.
K

 

[Dave63]

Just had email notification that the ICB will be holding the teams meeting on 2nd Feb.
I’m a bit shocked how quick it is, as I was told initially 4 - 6 weeks, it will be under 3 weeks.
We are based in Kent.
Is this odd or normal?

For a CHC MDT assessment it is extremely quick, not neccessarily a bad thing per se, but as I mentioned previously it's not allowing a great deal of time for all the evidence based material to be gathered together. Have you been told who will be attending the MDT?

Read through a blank copy of the DST that'll be used during the MDT and make a judgement as to how you think mum should score in each of the domains. Make some notes as to why you think the scores should be what you have decided so that during the assessment you can give your own view should the panel think it should be different (ie, lower). Any disagreement on scores should be noted in the DST by the assessor.

https://assets.publishing.service.gov.uk/media/635171fee90e07768d7f926c/NHS-continuing-healthcare-decision-support-tool-referral-form.pdf

 

[sue31]

For a CHC MDT assessment it is extremely quick, not neccessarily a bad thing per se, but as I mentioned previously it's not allowing a great deal of time for all the evidence based material to be gathered together. Have you been told who will be attending the MDT?

Read through a blank copy of the DST that'll be used during the MDT and make a judgement as to how you think mum should score in each of the domains. Make some notes as to why you think the scores should be what you have decided so that during the assessment you can give your own view should the panel think it should be different (ie, lower). Any disagreement on scores should be noted in the DST by the assessor.

https://assets.publishing.service.gov.uk/media/635171fee90e07768d7f926c/NHS-continuing-healthcare-decision-support-tool-referral-form.pdf

I have a feeling this is just a process being fast tracked and will be turned down
Yesterday a sw phoned saying she will be representing my mother. I questioned how she could if she’s never set eyes on her. Short silence, but if huffing & said she would pop into the home Monday. Then proceeded to ask if she had a property, to which I replied she does but it’s only half hers, so we wouldn’t sell it. She then came out with “you’ll have 12 weeks to sell it to free up funds” I obviously pointed out to her that’s no concern until her care is determined.
Response was “I’m just telling you what will happen”. I wish I’d recorded it!

So I’m guessing no matter what she comes up with Monday it’s more or less case closed. CHC is going to be refused.

I’m fuming!

 

[nitram]

Response was “I’m just telling you what will happen”. I wish I’d recorded it!

Decision made?
Response was “I’m just telling you what will may happen”. I wish I’d recorded it!

 

[sue31]

Decision made?
Response was “I’m just telling you what will may happen”. I wish I’d recorded it!

Sincerely hope it’s not decision made without full input from all concerned but it was definitely will.

Must say I am looking forward to this next meeting. It’s taken them 3 emails to get the time & date right so far! So I’ve not got much faith in this system right now.

Have to see how she is face to face Monday. If it’s even mentioned at her assessment visit with mum I’ll not be holding back at the MDT in 2 weeks for sure.

End of the day money or not it’s mums/or any persons health needs that are supposed to be top of the list not a bank balance. That should not even be relevant until it’s decided one way or another.
She barely enquired on her current condition or anything else - just bank & home.

Think she might have been slightly annoyed at my asking how she could represent her without even seeing her, so she thought she’d have a shot back.