Mum through to the DST stage after Checklist Meeting

[Kikki21]

Although I am glad I have managed to get my mum through to the next stage after the checklist meeting & have a DST best interests meeting planned shortly for the next stage of her care plan, I am pretty disgusted with this NHS tickbox exercise & the fact that they can wrongly assess people or not have that much dementia awareness in how people present themselves.

Also that they are not too bothered about missing notes or that information is wrong - no wonder people have trouble qualifying for CHC if that is the case.

The discharge facilitator happily told me that she thought my mum is in early stage dementia after a 45 minute meeting with my mum yet she is also ascertained her to have no capacity. Really.

I was literally gobsmacked. My fiancé got angry because it also transpired that they have no notes from the meeting I had with the hospital consultant ( who is the lead clinician in geriatric care) & the ward manager where he categorically stated that she was late stage dementia & that her life expectancy wasn’t very good & could be measured in weeks & months. Bit of a difference in opinion there eh.

The notes also said that she had had 1 stroke or seizure when she actually had several that we noted. She had the big one at home that the carer witnessed, then we witnessed another at home. She had another one at A&E in the trolley & then another one/two on the ward. It wouldn’t surprise me if she had had more. Again not great.

I felt some of the scoring was deliberately downplayed & underscored but at least she did score highly enough to go through to DST. I feel like I have a battle on my hands!

 

[Kikki21]

@Kikki21, it's really good news that your Mum had a positive checklist and is through to the full DST stage. My own Mum failed on the CHC application which I suspected would happen. When you look at the criteria on the checklist, I am surprised that anyone actually qualifies for CHC! I suspect that is why they don't. However, a positive checklist virtually guarantees Funded Nursing Care even if your Mum doesn't qualify for the full amount of CHC. This is what has happened with my own Mum which is as I suspected from seeing the criteria. It's very difficult because the nursing teams are only allowed to look at the patients health as they are presenting now, literally and not from historic behaviour or health. That means if certain behaviour is not exhibited whilst the person is being assessed in hospital (even if it has in the past), then that behaviour or issue will not count towards the current CHC assessment scoring. Unfair and unjust really Kikki, but I expect you know all this already! Personally, I think FNC is better than nothing and is still quite a contribution compared to none at all and it seems a given that your Mum will definitely qualify for that. The mental capacity assessment problem seems to be universal. So few people truly understand dementia and it seems that we amateur carers, with in-depth personal experience earned the hard way, have a greater understanding than some medical or SS professionals.

At least you will be able to attend the DST meeting yourself and put forward your own evidence in support of the application. I had to attend my DST meeting over the phone for my Mum as I was unwell and not able to attend and they couldn't change the date. I found the nursing staff had a very good understanding of my Mum and on going through every stage of the in-depth questionnaire, could find nothing that I wanted to change. In the end, it is all down to the criteria which is set at levels so high that very few qualify. I know from posts on here that people much worse than my own Mum have not qualified for CHC so I had little hope that she would, which helped, as my expectations were not high. Perhaps, when there is more understanding of dementia a few years in to the future, the CHC application will make more allowances for the particular characteristics of this illness. Little help to all of us now, sadly.

Good luck with the DST Kikki, please let us know on this post how you get on.

Thank you for your kind words @Carmar - I can only hope that my mum gets CHC funding due to the fact that she has scored an A for Cognition & that she is judged to have no capacity. I think I will have to lay it on think that she is a vulnerable adult that needs safeguarding & that her safety cannot be guaranteed living at home on her home.

I’ve got no idea how much FNC money equates to as opposed to CHC. I just think that for everyone with dementia, it is awful having to get to this stage & selling your home to pay for care.

I think it will be a miracle if my mum gets CHC but i’m going to give it my best shot!!!

 

[Pete R]

Anyone with a Nursing need gets FNC and it is not difficult to get. At the moment it is £155.05/week and is only payable direct from NHS to a Nursing Home. Sometimes this makes the total fee less sometimes it makes no difference.

 

[Jessbow]

Cognition is the last criteria that will ensure funding. The whole point of CHC is that it is awarded to someone with a MEDICAL need. Carers can meet the needs of someone lacking in cognition, It doesn't need qualified nursing care.

There are options between CHC funding, and living at home.
Have you thought what is going to happen if she doesn't get it?

 

[love.dad.but..]

I met last night with a few of the wives of residents at the NH where dad was. 2 told me that CHC had been given for around 2 to 3 years and their husbands had been reassessed and funding now declined. They both appealed with what the NH said was strong evidential support for a few high scoring areas and both appeals were turned down. One may have to move her husband as the LA probably won't fund to the NH fee level so is waiting on finding out what home they will offer as she can't afford a top up where he is.

 

[Jessbow]

I met last night with a few of the wives of residents at the NH where dad was. 2 told me that CHC had been given for around 2 to 3 years and their husbands had been reassessed and funding now declined. They both appealed with what the NH said was strong evidential support for a few high scoring areas and both appeals were turned down. One may have to move her husband as the LA probably won't fund to the NH fee level so is waiting on finding out what home they will offer as she can't afford a top up where he is.

That's the thing, you might get it, but if far from guarenteed for ever. I believe that it SHOULD be re-assed regularly, Even medical needs become more stable over time and properly managed

 

[love.dad.but..]

That's the thing, you might get it, but if far from guarenteed for ever. I believe that it SHOULD be re-assed regularly, Even medical needs become more stable over time and properly managed

Yes they have been reassessed every 6 months

 

[Kikki21]

Cognition is the last criteria that will ensure funding. The whole point of CHC is that it is awarded to someone with a MEDICAL need. Carers can meet the needs of someone lacking in cognition, It doesn't need qualified nursing care.

There are options between CHC funding, and living at home.
Have you thought what is going to happen if she doesn't get it?

My mum suffers from angina & needs the spray. Her cognitive state would affect her medically because how will she remember she takes a spray if she has an angina attack if she is on her own? How will she remember what she needs to take & how much of it?

I guess she could still live at home with more care hours during the day but it is the night which is the worry.

I was told by a social worker that the LA would fund 30 care hours a week, prior to being in hospital she was only receiving 17.5 hrs a week. Then the social worker said anything above 30 hrs then she would need to go into a care home.

Unfortunately we rent our current home & we don’t have the space to live with my mum here & neither does she have the space for us to move in with her.

 

[Jessbow]

My mum was an insulin dependant diabetic, registered blind, with advanced dementia. A widow with no capacity whatsoever, = didn't qualify

it was only when she collapsed, received CPR ( against my better judgement) and discovered to have an aortic stenosis, and only then deemed inoperable because of all the above did we get it.

 

[Beate]

Whether someone has capacity or not has no bearing whatsoever on CHC funding. I'm sorry, but you cannot apply common sense to that scoring. The criteria are very strict, and having no cognition on its own means nothing. Don't get hung up on her pre-scores. The DST scoring is much more detailed, and it's not in favour of most dementia patients. Some categories are deemed more important than others because they cover a medical need.
Hope for the best and prepare for the worst, then you won't be disappointed.

It's also best not to confuse issues. The DST meeting is purely about funding care, whatever or wherever the care may be - it does not determine the type of care. Whether your Mum goes into a care home or not will have to be determined separately in a best interest meeting.

 

[Kikki21]

Whether someone has capacity or not has no bearing whatsoever on CHC funding. I'm sorry, but you cannot apply common sense to that scoring. The criteria are very strict, and having no cognition on its own means nothing. Don't get hung up on her pre-scores. The DST scoring is much more detailed, and it's not in favour of most dementia patients. Some categories are deemed more important than others because they cover a medical need.
Hope for the best and prepare for the worst, then you won't be disappointed.

It's also best not to confuse issues. The DST meeting is purely about funding care, whatever the care may be - it does not determine the type of care. Whether your Mum goes into a care home or not will have to be determined separately in a best interest meeting.

I honestly don’t think she will qualify for CHC judging by what I have read & researched. But sometimes miracles happen. I only mentioned best interests as this is what the discharge facilitator told me, she actually described it as a DST best interests meeting! No wonder i’m confused!

 

[love.dad.but..]

Hi @Kikki21, hate to be the bearer of bad news, but my Mum scored as Maximum/High Need on the DST for Cognition, which is one of the categories. There is also a Behaviour category, in which my Mum scored Low Need as she is not on meds for aggression etc. Cognition does matter as part of the scoring but it is not enough to have only one High Need in the scoring, there must be more. My Mum scored High for Cognition, several lows and several moderates in other categories. The total scoring was not enough to qualify. In fact Mum has no house or savings and is totally dependent on LA funding. In her (our) case the decision has been made that Mum needs nursing care, which means that regular Care Homes will not accept her. Only Residential Dementia Care homes with Nursing or pure Residential Dementia Nursing Homes will now accept her. LA funded nursing homes in our area have no places at all and are all full. In fact, in spite of scoring Moderate for Continence (dual incontinence due to rectal prolapse), Mum is currently being offered shared bedrooms with no toilet purely due to the fact that LA funding, even with the possibility of FNC will not cover any other sort of accommodation. I am finding this very scary for Mum. I have no experience of two unrelated people with dementia sharing a care home room (let alone one without a toilet) and at this point am very worried so have not accepted what has been offered. At some point very soon, a decision will have to be made. So ... there may not be that much of a benefit to your Mum to actually qualify or receive Funded Nursing Care anyway, if she fails to quality for CHC. The whole thing is a minefield. Personally, I feel very low about my Mum's situation as the places with beds available are in locations I am unable to get to! One day things will change for people with dementia. One day. At the moment, all our loved ones are only showing the lack in our society in caring for people with dementia and there are no perfect solutions.

I cannot have imagined anyone being forced to share a room with my dad and all his challenges and equally for dad having to share a room with someone would have been totally unacceptable. His halluconations...night time pacing...poor toileting and hygiene habits...verbal aggression through lack of understanding...lack of dignity and privacy...the list goes on...unsuitable for dad and everyone else. Where is the dignity in forcing someone lacking mental capacity to share a bedroom when pre dementia they would not have chosen to share a hotel bedroom with a stranger! I hope something more suitable is found for your loved one.

 

[Kikki21]

Thank you @love.dad.but.. i feel exactly the same. My Mum is petite in size and mostly compliant in nature but has dreadful continence problems. Just thinking about her having to share a room with a very ill, complete stranger, for the rest of her life when she is also so ill and unpredictable with limited mobility and no toilet in sight, makes me feel sick with worry. How can this be protecting vulnerable adults? Sorry @Kikki21, don't want to hijack your post!

It’s no problem @Carmar - your mum’s issue just highlights the poor understanding of this illness! That is truly shocking what is being proposed for your mum. But hardly a surprise.
I think the only way things will change in this country is that more people need to lobby their MP about how people with dementia are treated.