DST Assessment yesterday...recommendation not to fund CHC...but...

[feralcole]

Hi everyone

So we had my Mum's DST Assessment yesterday with 3 people who had never met my Mum - I wasn't at all happy with two of the categories they marked Mum down on, but hey-ho will have to challenge that at an Appeal.

The categories were:

1. Mobility/Risk of Falls - they said she was moderate risk despite recovering from a broken hip, a long history of falls (recorded), constant vertigo which makes it hard for her to balance and move around; and being unable to walk unaided confidently and safely with a frame...all that coupled with Osteoporosis too!
2. Psychological/Emotional Needs - I stated these should be high, they felt moderate...which I found absolutely unbelievable...of course advanced dementia is going to have a sever impact on an individuals health and well-being.

I heard back from the CCG rep this morning and she confirmed that they are NOT recommending Mum for CHC (no surprise) but they ARE recommending Mum for Funded Nursing Care as they said she clearly has nursing needs, however the CCG rep said Mum doesn't qualify for that support until she moves in to a home! As many of you know, it is best to keep a dementia patient in their own home for as long as possible, and Mum is not yet ready for a home.

I am completely baffled by their reasoning, they state she doesn't have a primary health need but does need nursing care in a home, which they will pay for. Surely that's some sort of admission that my Mum's needs are above and beyond that which can legally be provided by the local authority? Hence, she should qualify for CHC.

Has anyone had a similar recommendation to this, and if so what was the outcome? Obviously I have to wait for the recommendation from the DST to go to the final panel, but I doubt their final decision will be any different.

Thanks
LC

 

[Louise7]

I am completely baffled by their reasoning, they state she doesn't have a primary health need but does need nursing care in a home, which they will pay for. Surely that's some sort of admission that my Mum's needs are above and beyond that which can legally be provided by the local authority? Hence, she should qualify for CHC.

Hello @feralcole

To answer your question about whether your mum should qualify for CHC, if someone has nursing needs that can not be met by the local authority - they require input from a registered nurse - but do not have a primary health need, they would qualify for FNC, which can only be paid if they are resident in a nursing home. Eligibility for CHC would apply if they were deemed to have a primary health need - they have a higher level of health need than FNC funding would provide. It's a real minefield, and according to reports CHC eligibility can also depend on where you live and how much funding is available. It seems from the many CHC posts on here that many have found it very difficult to get full CHC funding. Some have been successful though, so hopefully someone will be along soon to provide some advice on the type of needs that resulted in a positive result. Good luck with your appeal.

 

[feralcole]

Hello @feralcole

To answer your question about whether your mum should qualify for CHC, if someone has nursing needs that can not be met by the local authority - they require input from a registered nurse - but do not have a primary health need, they would qualify for FNC, which can only be paid if they are resident in a nursing home. Eligibility for CHC would apply if they were deemed to have a primary health need - they have a higher level of health need than FNC funding would provide. It's a real minefield, and according to reports CHC eligibility can also depend on where you live and how much funding is available. It seems from the many CHC posts on here that many have found it very difficult to get full CHC funding. Some have been successful though, so hopefully someone will be along soon to provide some advice on the type of needs that resulted in a positive result. Good luck with your appeal.

Thank you

It is so, so confusing, frustrating and full of grey areas and loop-holes. Plus the whole system from the CCGs to the Social Workers (the ones I am dealing with anyway) seem very ignorant/unbothered. If my Dad was having to deal with this, I know he wouldn't bother, the system is designed to deter. I'll keep on though, for my Mum.

 

[canary]

they ARE recommending Mum for Funded Nursing Care as they said she clearly has nursing needs, however the CCG rep said Mum doesn't qualify for that support until she moves in to a home!

The point of funded nursing care is that you have nursing needs that required a qualified nurse on site 24/7. This cannot be provided by District Nurses, so is only payable if you are in a nursing home - and it has to be a nursing home, not even a residential home or a care home - otherwise payment is being made for a service that is not being provided.

 

[canary]

BTW - Im not entirely sure why you are looking for CHC when you plan to keep her at home. Do you already have carers coming in and is she self-funding? If she is not, then there is no advantage in going for CHC.

 

[Jessbow]

My mother had Lewy Bodies dementia, a widow, registered blind, double incontinent and insulin dependant diabetic- she didnt qualify until she had an inoperable heart condition which caused collapse.

its hard, but not impossible.

Which of your mothers needs , need to be met by a qualified nurse, as opposed to a carer?

 

[feralcole]

BTW - Im not entirely sure why you are looking for CHC when you plan to keep her at home. Do you already have carers coming in and is she self-funding? If she is not, then there is no advantage in going for CHC.

we are self-funding, and we have had carers come in to help with the social care needs, but to be honest we can take care of those things better than carers can in their 30 minute time slot...it's the daily physiotherapy; ensuring she doesn't fall over every time she gets up (she has vertigo and constantly wobbles when she moves), dealing with the constipation, the frequent bedsores, the constant psychological/emotional needs side of things (fear/anxiety); night terrors. All low-level nursing needs admittedly, but they are 24/7 (as you will all know). The National Framework states that CHC funding is available for any setting, even your own home.

 

[nitram]

The National Framework states that CHC funding is available for any setting, even your own home.

An advantage of CHC at home is that AA continues to be paid.
There is at least one forum member whose late wife had this.

 

[clarice2]

BTW - Im not entirely sure why you are looking for CHC when you plan to keep her at home. Do you already have carers coming in and is she self-funding? If she is not, then there is no advantage in going for CHC.

 

[clarice2]

My husband had CHC and AA. He was at home so all carer bills were paid.

 

[canary]

My husband had CHC and AA. He was at home so all carer bills were paid.

Im curious. What exactly did CHC at home cover? I have heard that you only get carers for a certain number of hours a day and nothing overnight. Is this true?

 

[clarice2]

Im curious. What exactly did CHC at home cover? I have heard that you only get carers for a certain number of hours a day and nothing overnight. Is this true?

I was covered for nights when I had a weekend off. We had the meeting at home as my husband was bedbound. It was attended by a social worker, a district nurse, a representive from the care agency and the official, I have forgotten her title. She asked the questions, we all discussed and a decision was made and she filled in the forms. When the meeting was finished they agreed we would get CHC with confirmation to follow. The social worker arranged to return a few days later. We went through everything I did from getting up in a morning. I was allowed 2 carers, for 1 hour, 4 times a day, if I wanted them. I was also allowed a carer to sit with him for aprox 3 hours on 4 days a week so that I could go out to shops or a walk or to see friends.
I had no family in the area so had a weekend every few weeks to visit them. One carer would be there, replacing me, 24 hrs a day and the other carers still came as normal. My weekend off was Fri 12pm to Mon 12pm. It was only a problem sometimes arranging the teams of carers to cover for me with my regular ones sleeping over.
The care package given to me was wonderful. I see many people on here who do not get this help and I don't understand why their local authority can't give the same help. I live in Wigan.
I was told that the CHC covered all of my husband's needs. If I had booked respite for a week to go on holiday the care would be paid for but of course I would have paid my own expenses. I didn't do this but was told that I could.

 

[Louise7]

The care package given to me was wonderful. I see many people on here who do not get this help and I don't understand why their local authority can't give the same help. I live in Wigan.

Unfortunately it seems that CHC eligibility is a 'postcode lottery' and as per the link below, in 2018 the National Audit Office concluded that ‘there are limited assurance processes in place to ensure that eligibility decisions are consistent, both between and within local NHS clinical commissioning groups (CCGs).’ We submitted a complaint to the CCG in relation to Mum's CHC assessment - in relation to the quality of the assessment rather than the eligibility decision - and they agreed that they had no assurance processes in place (this was after the publication of the NAO report).

https://www.which.co.uk/news/2020/0...-care-home-funding-variations-across-england/

 

[lollyc]

Wow!
My neighbour got funding for her father, but it was withdrawn when he became bedbound, and was deemed to require less care.

Unfortunately, it seems to be all or nothing, whereas perhaps a graded level of funding would be fairer. Some hope!

 

[nitram]

My neighbour got funding for her father, but it was withdrawn when he became bedbound, and was deemed to require less care.

That quite often happens as risk of falls becomes zero.

 

[Jessbow]

Unfortunately, it seems to be all or nothing, whereas perhaps a graded level of funding would be fairer. Some hope!

There is, isnt there? You usually get a nursing care award if you don't get full CHC.
Needs are all so different, and the ballpark point appears to be needing qualified nursing care, not just carers who can meet most needs, along with financial assesment of ability to pay .

Much as it does seem rubbish sometimes, I am not sure that everyone could have free 24/7 care at home - given the cost ( to someone)

 

[nitram]

the ballpark point appears to be needing qualified nursing care,

More like variable and unpredictable qualified nursing care.
The community nursing service can administer care on a regular basis e.g. injections and dressings.

This will qualify for FNC, for CHC there has to be a primary health need

 

[clarice2]

There is, isnt there? You usually get a nursing care award if you don't get full CHC.
Needs are all so different, and the ballpark point appears to be needing qualified nursing care, not just carers who can meet most needs, along with financial assesment of ability to pay .

Much as it does seem rubbish sometimes, I am not sure that everyone could have free 24/7 care at home - given the cost ( to someone)

I would not have been able to have 24/7 care for my husband. We were self funding and when CHC was awarded It was decided how much care I could have for him . A budget was set. I did not get the money but I recived bills from the care agency and would agree that these hours had been worked, or not, and if aproved the bill would be paid.
After a certain time period, a year I think, if I was not making use of the full budget then it would be less next time it was given. That money could be then quite rightly be used to help someone else.
Before we got CHC like many of you I managed alone. No one to help me to lift,clean and move him. I ran across the road to a shop when he was asleep. That was my time out of the house. He got worse ,had operations and Lewy Body dementia. They said in hospital he didn't qualify for CHC but when I brought him home the district nurse said we should try again. I paid for carers then until it was awarded. We had 2 years of CHC. It made life better and I coped for a lot longer than I would have done alone. My nurses, carers, local authority and doctors were wonderful. I have been very lucky with the care they gave us right up to the end and I wish more of you had the same

 

[feralcole]

thank you for sharing your experience @clarice2 - and to everyone else for their input and questions.

my mum is definitely very high risk of falls...and I can now see that during the assessment the people attending tried to put words in to my mouth, stating that my mum's mobility was moderate, because she could weight bear and move with a frame. they chose to ignore that she needs someone next to her when she moves with a frame, that her vertigo makes her unsteady even with a frame...in fact, she even forgets how to use the frame properly so that in itself is a big risk!

my energy is sapped right now, but once I get the final decision, I will appeal. my mum can not be left alone, and if she was alone she would die. she has needs, they are just well-managed - and if they weren't, her health would deteriorate rapidly.

 

[Grancan1313]

hi can I just ask how did you get invited to the DST my father is waiting for an assessment and I don't speak with my step mother so she wont pass on any details and would like to be present (I have lpa to for finance) would I contact CCG? thanks