Help CHC Referral, full DST mtg on Thursday and other issues

Elle3

Registered User
Jun 30, 2016
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Hi my mother in law (MIL), over 15 years ago had a serious stroke which left her paralyzed and brain damaged down her left side and required 24/7 care which my FIL has been doing all this time without assistance, she has also been diagnosed with Dementia.

At the end of November she was admitted to hospital and was in there for a couple of months, mainly because my FIL who is 84 became ill over Christmas. A best interests meeting was held on 5th January with the hospital social worker and basically a decision was made that my FIL can no longer take care of her at home so MIL would be discharged to a care home on a 4 week D2A . It was also thought the Social worker just wanted to free up a bed in the hospital. My MIL's primary need is as a Stroke patient but with a secondary need of Dementia. However, without any further discussion she was discharged on the 15 January to a unit purely for Dementia patients, some of which have behavioural issues. My MIL is bed bound and never leaves the room and requires really one to one care to make sure her needs are being fully met. To complicate matters, within 3 days (18th Jan) of her being admitted, the unit went into lockdown due to a Flu outbreak and no visitors were allowed. 6th February visitors were finally allowed back in again and my FIL has already identified many issues with regards her care and the staff are showing serious signs of lacking knowledge of how to care for a person who has had a stroke. She is in constant pain and should be given regular pain relief, but the staff have been asking her if she wants it and she has been saying no as she really doesn't understand what they are asking. Other Dementia patients are wandering into her room and closing the door and the staff do not seem concerned by this, all the clothes and toiletries my FIL brought in and labelled have all gone missing. The staff only check on her every hour, she's had no drinks cup, food has been presented to her on a plate with a knife and fork, not already cut up (she can't do it herself as she has only one functioning hand and can only see food on one side of the plate, which is a complication of the Stroke) and my FIL has witnessed them moving her by grabbing hold of her disabled side, which shouldn't be done.

What we thought was going to be another best interests meeting on the 15th February, this Thursday, where we thought we could raise our concerns, is actually going to be a CHC Decision meeting. Apparently without our knowledge a CHC Checklist review was held on the 30 Jan and a referral was made. I've been through the CHC process before with my dad and my dad was awarded full CHC funding, however, I had the full support of a Social worker and care home staff and we had been gathering lots of evidence in preparation for the meeting.

Basically with my MIL we are not even aware of a Social worker being appointed yet, the staff in the care home don't seem to be aware of the meeting and I doubt have been gathering evidence to support the claim. We don't even know how she was scored in the Domain's when the checklist was completed for her to be referred.

I feel that it's almost certain that CHC will not be awarded, mainly due to lack of preparation. Has anyone else been in a similar situation and I was wondering if there anything we can do about it?

Secondly regardless of CHC being awarded or not, my FIL preferably would like her moved to a more appropriate care home, one that knows how to look after a stroke patient and understands how this affects the brain as well as the body. He will be LA funded if CHC is not awarded, although that hasn't been talked about yet and no financial assessment as been carried out, mainly because they haven't been able to get Social Services to appoint anyone. I'd have been happy to fight my FIL and MIL's cause and best interests, however I don't have LPA so no one will talk to me, my SIL does, but she's very busy with work and just can't give it the time. They keep coming to me for advice, but I'm finding it very frustrating not being able to help them fully and my FIL is basically putting his head in the sand at the moment. Any advice please would be appreciated how to simplify this all for them and I could get them help?

Thanks.
Elle
 

DeeCee7

Registered User
Oct 13, 2023
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Hello @Elle3 gosh that’s a lot going on for you. Yes the hospital SWs are keen to move patients on. My PWD was admitted to hospital with a stroke, and spent several weeks there until he was allocated a D2A bed in a care home, which ended up a permanent move. His stroke was nowhere near as serious as your MiLs, and I can only offer sympathy but not advice. Have you had the chance to read the other posts on the subject of CHC. The helpline would also be a good resource. Is it possible to request a delay in order to gather more evidence?
If your SIL cannot give the time, and fulfill her obligations as an attorney, could you ( if you wanted) apply for LPA yourself? More questions than answers I am afraid. But good luck with it all, it sounds like you are doing more than your best to help.
 

Elle3

Registered User
Jun 30, 2016
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Hello @Elle3 gosh that’s a lot going on for you. Yes the hospital SWs are keen to move patients on. My PWD was admitted to hospital with a stroke, and spent several weeks there until he was allocated a D2A bed in a care home, which ended up a permanent move. His stroke was nowhere near as serious as your MiLs, and I can only offer sympathy but not advice. Have you had the chance to read the other posts on the subject of CHC. The helpline would also be a good resource. Is it possible to request a delay in order to gather more evidence?
If your SIL cannot give the time, and fulfill her obligations as an attorney, could you ( if you wanted) apply for LPA yourself? More questions than answers I am afraid. But good luck with it all, it sounds like you are doing more than your best to help.
Thank you for your reply. I feel fairly confident with handling the CHC process as I've been through it before, it's just the lack of preparation for it I am concerned about, but I think it's probably too late now to try to stop it. It's just stressing me a little as the family all seem to be looking to me to sort everything when there is actually very little I can do when I don't have LPA. It's also far too late to change the LPA as my MIL does not have capacity.

I've just found out that a another care home that specialises in care for Stroke patients, that is closer to my FIL and he was wanting to get her transferred to, is £3K per week!!! more than double what the current care home will be charging, so I doubt the CHC or the LA would consider moving her.
 

Dave63

Registered User
Apr 13, 2022
510
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I'd have been happy to fight my FIL and MIL's cause and best interests, however I don't have LPA so no one will talk to me
Guidance on sharing a persons personal data is set out in the CHC National Framework from para 80 onwards.

Para 81 - It is necessary to obtain an individual's explicit consent before sharing any personal data with a third party such as a family member, friend, advocate, and/or other representative.

Para 82 - However, it is not necessary to seek consent from an individual in order to share their personal data where this is necessary for the purposes of their NHS Continuing Healthcare assessment (and subsequent reviews) or the provision or management of their health or social care treatment between health and social care professionals.

My sister has LPA for mum but I dealt with everything regarding CHC assessments, reviews, appeals, complaints and occasional tantrums etc, and it was never an issue.

Link to National Framework:

 

Elle3

Registered User
Jun 30, 2016
721
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Thought I'd give an update. CHC meeting last Thursday went as expected, it took 3.5 hours to decided my MIL was not eligible for CHC funding, but would be awarded FNC. We basically got the impression unless someone is totally immobile, unable to communicate or comprehend anything at all, comatose and their skin is falling off and their behaviour is off the scale, then you don't stand a chance of getting funding. Even the SW and nurse argued some scores, but it didn't change anything.

I need to ask for more advice now, but I will start another thread. Thanks
 

Rayreadynow

Registered User
Dec 31, 2023
437
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Thought I'd give an update. CHC meeting last Thursday went as expected, it took 3.5 hours to decided my MIL was not eligible for CHC funding, but would be awarded FNC. We basically got the impression unless someone is totally immobile, unable to communicate or comprehend anything at all, comatose and their skin is falling off and their behaviour is off the scale, then you don't stand a chance of getting funding. Even the SW and nurse argued some scores, but it didn't change anything.

I need to ask for more advice now, but I will start another thread. Thanks
I came to that conclusion too. I understand that if someone can be moved by a hoist or wheelchair then they are classed as being fully mobile i.e. moved from A to B.
 

whoknkows

Registered User
May 16, 2023
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Elle3. I am expecting same outcome for MiL, surprised that not being able to move, is a moderate for mobility! She scored severe for cognition, so even if she could do things she can’t understand instructions she apparently doesn’t even understand to ring the help bell. Double incontinent, wheelchair and hoist, skin cancers, low BP, kidney disease, etc etc. But she can breath so that was zero needs. All in all because she isn’t aggressive physically and most days, after two attempts takes her meds, she has moderate needs. 😁🤔. If she was at home in her flat she wouldn’t be with us anymore, even with 4 care visits …. But she doesn’t know who she is or where she is and the treat of a chocolate eclair has gone because she can’t eat it…. But all moderate needs! It’s not her money I am worried about, as this is fight between SS and ICB - the SW said she was up for a fight - good for her. MiL gives all her income and chunk of life’s savings every month which covers about a week of her nursing home fees. But for my aunt who died aged 92 in care home she fully funded from her savings and work pension. No one told family about CHC and she was stuck in bed with no cognition for last 6 months of her life. She also had moments of being difficult and psychotic episodes. She may have been eligible for the nursing funding.

Good luck to all going through this.
 

Elle3

Registered User
Jun 30, 2016
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Sorry to hear it didn't go well @Elle3.

Link to your options below: The article is in two parts.

Thanks for this Dave63. MIL had her CHC meeting on the 15 February and we still have not had the outcome letter from the CCG. I've asked FIL and sister in law to chase this. This really should have been received by now. I know FIL does not want to appeal, but I have said we still need to see this outcome report even if it's to make sure it's a true reflection of what happened and what was said during the meeting.
 

Dave63

Registered User
Apr 13, 2022
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No one told family about CHC and she was stuck in bed with no cognition for last 6 months of her life. She also had moments of being difficult and psychotic episodes. She may have been eligible for the nursing funding.
If you're up to the challenge you could make a retrospective claim. Won't cost anything (other than time) and nothing ventured as they say.

 

Dave63

Registered User
Apr 13, 2022
510
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Thanks for this Dave63. MIL had her CHC meeting on the 15 February and we still have not had the outcome letter from the CCG. I've asked FIL and sister in law to chase this. This really should have been received by now. I know FIL does not want to appeal, but I have said we still need to see this outcome report even if it's to make sure it's a true reflection of what happened and what was said during the meeting.
Something has definitely gone wrong, you would expect an outcome letter within a week or so. Have you checked with the care home to see if they've received it? My mums outcome letter was emailed direct to her care home after the appeal but nothing was sent to us. Check with the home, they may have received it and thought they'd just been copied in and neglected to mention anything to you? Or, it could be a case of CHC administration being about as much use as a chocolate teapot.
 

Elle3

Registered User
Jun 30, 2016
721
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Something has definitely gone wrong, you would expect an outcome letter within a week or so. Have you checked with the care home to see if they've received it? My mums outcome letter was emailed direct to her care home after the appeal but nothing was sent to us. Check with the home, they may have received it and thought they'd just been copied in and neglected to mention anything to you? Or, it could be a case of CHC administration being about as much use as a chocolate teapot.
Never thought of that, but that also complicates things. Shortly after the CHC meeting she was moved to a different ward/floor of the care home and then about 2-3 weeks later FIL moved her to a different care home closer to where he lives and cheaper. So if it was sent to MIL directly it could be anywhere? I've told my SIL to chase it.
 

MaNaAk

Registered User
Jun 19, 2016
12,224
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Essex
Dear @Elle3,

I've just found this thread and I hope you're okay. This must bring it all back for you because I remember that your dad passed away a few months before my dad in 2019. Dad's anniversary is coming up on the 12th June and I already thinking about it. I hope your SIL does her bit and doesn't leave it to you.

MaNaAk
 

Elle3

Registered User
Jun 30, 2016
721
0
Dear @Elle3,

I've just found this thread and I hope you're okay. This must bring it all back for you because I remember that your dad passed away a few months before my dad in 2019. Dad's anniversary is coming up on the 12th June and I already thinking about it. I hope your SIL does her bit and doesn't leave it to you.

MaNaAk
 

Elle3

Registered User
Jun 30, 2016
721
0
Thanks MaNaAk. Having experience of it all does not make it any easier, but also it's frustrating as they are the ones with LPA so I really can't do anything. Time flies but the memories are all still very clear, I'll be thinking of you on your dad's anniversary. x