CHC crisis

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Mum has had CHC funding for a year. We've had all sorts of problems with the care agency provided. I've posted about some of them in the past on this forum.

We were just waiting to hear about further funding and a personal health budget (agreed to at recent CHC review) and then we were going to change agencies.

Things came to a head though, when there were problems with a new live-in carer and the agency gave notice.

That was 4 weeks ago and the CHC were supposed to be finding a new agency. I've been phoning them every day over the last week, as time was running out. Although, they had agencies who were interested in taking the package, the CHC were still getting quotes.

They asked us if we would consider respite in a nursing home and I said only if it was the specialised neurological home I had found. They said straight off it was too expensive and it's against the rules for us to top up. They said Mum does not need specialist care and any nursing home could meet her needs. I disagree and we all know it's all about the money, not about Mum's needs.

When they still had not found an agency on Wednesday of this week, the current agency said they would cover for at least another week but then today things changed.

I had a call from the CHC at 3.30 this afternoon (Friday). I was in bed, having been up all night with Mum as usual. They called again. I still wasn't up. I didn't pick up their message until 4.30 pm and called them straight away.

They said they had found a bed at a nursing home on Monday for respite. I said no, that I had already said we would only consider the specialised one (we hadn't even decided for sure on any respite). They repeated Mum does not need specialist care and did I think this specialised home were going to get her walking again (they have their own neuro physios and I had talked to them about helping Mum to walk again)? She said the specialised nursing home was for people with severe neurological problems. Ummm, hello? Mum has very advanced Parkinson's Disease, further complicated by Dystonia and a host of other neurological complications and other illnesses. Matron visits every day and under palliative care team. A whole host of other professionals in her care as well.

I asked to speak to her boss but she said they weren't available.

In the end, after an emotional discussion, she said she would call me back and it would be tonight, as it could not wait until Monday. She did not call back though. So, now we are left hanging over the weekend.

What are we going to do? Can they force the situation? We could pay privately for some respite at the specialised neurological nursing home (I don't know if that would affect the funding) but obviously, we can't arrange that by Monday and as I said, I'm not even sure that we want that.

It is completely unacceptable to have sprung this on us on a Friday afternoon. I've no idea what is going to happen on Monday.

Btw, I looked up the nursing home they have found for respite on Monday and CQC report says 'needs improvement'. Yet another reason, I will not agree to it. The care agency we've had for the past year is on 'special measures' with the CQC. This is the 'quality' you get from the CHC!
First, make a formal complaint. When was the last update assessment? A significant change should result in a new assessment - I presume mum's gradually going downhill? It's a while since I read the CHC Framework but I suggest you reread it again. Has the Matron/Manager from the home you want visited mum to do her own assessment, which is normal procedure? Have you been to both homes? If not, do so asap, if that's at all possible? The more information you have about the suitability, or otherwise, or either home, the stronger your case will be. Especially look at the extra facilities of the more expensive home. Then do an "Advantages/Disadvantages" table. Future needs and a declining condition mean that they are supposed to plan for the next 6 months. I would argue that eventually mum is going to need the better home, and it is in her interests to get to know it as respite, with a view to her finally being a full time resident. (No need to tell them if you don't agree with that idea!!)
PS Do both homes have vacancies? My LA main website has a page which shows all the vacancies in all the residential homes in the County. Which is nearest? If the nicest is nearer you, then that strengthens your case - because of mum's Human Rights to a Normal Family Life. I think there is something in the framework about this. If not, look at your CCCG's website, and find their CHC policy - it might be in there.
Hi Blue Mermaid, Is it really a year since we were all talking about CHC? BBs advice sounds excellent. It seems the CHC place far greater importance on budget outlay than quality of service.
How do you think your mum will benefit from the more expensive care home? I suppose you need to be a bit mindful of not upsetting CHC all together in case they withdraw funding . I know I felt that way when Dad was having such incompetant care provided at their expense for a few weeks.
Try not to worry too much over the weekend save your energy for Monday and as BB says , just do what research you can.
How is your mum at the moment and what sort of care is she needing. Is it getting too much to manage at home with domicillary carers? Is it cheaper for CHC to pay for residential than overnight carers/double ups or whatever at home?
Thanks for your replies guys.

Mum had a CHC review on 2nd September Bowlingbun. The nurse assessor agreed Mum needed night care and she called the CHC straight afterwards to let them know.

I have spoken to her since and she too says Mum doesn't need the specialised home.

The Matron did the original assessment for night care.

I've only spoken to the manager of the specialised home on the phone a few weeks ago. No assessment done, because I was just making an enquiry. He said Mum was an ideal candidate for the home.

There's no time to do anything before Monday and being a weekend makes it even more difficult. Add on the fact that I have my own illness to cope with and being very sleep deprived, looking after Mum at night, I haven't got the energy to go looking at the homes this weekend, even if it were possible.

Mum has continued to go downhill.

I agree with the argument about getting to know the specialist home first with respite and that is what Mum suggested herself. I can't even talk to her about it today, as she's is in the 'half awake/half asleep' state she goes into, constantly calling for help, in a dreamlike state and in pain.
bowlingbun wrote:First, make a formal complaint. When was the last update assessment? A significant change should result in a new assessment - I presume mum's gradually going downhill? It's a while since I read the CHC Framework but I suggest you reread it again. Has the Matron/Manager from the home you want visited mum to do her own assessment, which is normal procedure? Have you been to both homes? If not, do so asap, if that's at all possible? The more information you have about the suitability, or otherwise, or either home, the stronger your case will be. Especially look at the extra facilities of the more expensive home. Then do an "Advantages/Disadvantages" table. Future needs and a declining condition mean that they are supposed to plan for the next 6 months. I would argue that eventually mum is going to need the better home, and it is in her interests to get to know it as respite, with a view to her finally being a full time resident. (No need to tell them if you don't agree with that idea!!)
The CHC home does. They have a bed and CHC planned for her to go on Monday. They knew full well, we would only consider the specialised home.

I don't know if the specialised one has a vacancy. As I said, I only heard the news at 4.30 pm this afternoon from CHC and came off phone at 5 pm. I will have a look at our LA main website but I've never seen a page showing all the vacancies before.

The CHC home is the nearest.
bowlingbun wrote:PS Do both homes have vacancies? My LA main website has a page which shows all the vacancies in all the residential homes in the County. Which is nearest? If the nicest is nearer you, then that strengthens your case - because of mum's Human Rights to a Normal Family Life. I think there is something in the framework about this. If not, look at your CCCG's website, and find their CHC policy - it might be in there.
Try to visit the specialist home this weekend then, to say why it is more suitable. However, IF mum goes to the CHC recommended home and it's a disaster, then that will prove your case for the other home. Then they would have no alternative but to fund it.
It sounds like you are desperate for a break, so don't beat yourself up too much of the CHC home is, at least temporarily, the only option, because your health is every bit as important as mum's.
Just a thought that might put your mind at rest a bit if your mum ends up in the CHC preferred home, and that is that although your preferred care home said your mum was an ideal candidate, remember they would have been touting for business so would have been persuasive that their services were needed and useful for your mum. I am just wondering if your mum is needing so much care and has been steadily declining whether their services are more aimed at rehab? What positive benefits would they bring to your mum's care? At least if you think about this and get it clear in your head it will be easier to explain on Monday if that is what you want to do.
I can't believe it's been a year either. I do read your posts on the forum and I'm always sorry to read of your problems. Sorry I haven't sent any replies.

It's all about the money with this particular Clinical Verifier from the CHC. She has no empathy at all.

Mum has specialised neurological problems, such as Dystonia. The Matron did not even know what that was. It was not recognised in hospital either. The specialised nursing home has their own team of neuro physios etc and said they might be able to help with her mobility problems caused by the Dystonia. She has been stuck in bed, since the care manager said hoisting only to the carers. She rarely feels well enough to leave bed now but even when she wants to get up, she is bereft that nobody is trying to help her walk again. She could only walk on her toes with frame and 2 people assisting and a very short distance (from dining room to living room), a year ago. She was having botox treatment for the contractures but it didn't work. Now she has it in both hands as well as both legs/feet. So, has lost the use of her hands as well. It also affects her jaw, her speech and her cognition when she has a diskinetic attack. Her eyes roll up into her head and she becomes unresponsive.

The Clinical Verifier said any nursing home can deal with contractures and did I think the specialised one was going to help her walk again? She said that as if I was crazy if I thought that.

That's just one example of her specialised problems.

Yes, they did say a while back that the new package of care at home would be more expensive than residential care. She's been assessed as needing a live-in carer, 4 double up visits a day and a waking night carer every night.
Henrietta wrote:Hi Blue Mermaid, Is it really a year since we were all talking about CHC? BBs advice sounds excellent. It seems the CHC place far greater importance on budget outlay than quality of service.
How do you think your mum will benefit from the more expensive care home? I suppose you need to be a bit mindful of not upsetting CHC all together in case they withdraw funding . I know I felt that way when Dad was having such incompetant care provided at their expense for a few weeks.
Try not to worry too much over the weekend save your energy for Monday and as BB says , just do what research you can.
How is your mum at the moment and what sort of care is she needing. Is it getting too much to manage at home with domicillary carers? Is it cheaper for CHC to pay for residential than overnight carers/double ups or whatever at home?
Even if they can't help her to walk again, it is the fact that they will recognise her problems and symptoms and will know what is going on when she has dyskinetic or dystonic attacks. They will know all the problems of Parkinson's Disease. They will understand the non-motor symptoms as well as the motor ones.

It was clear in the Bupa home she went to for respite once before, they did not have a clue about Parkinson's, even though they claimed to and she did not have the Dystonia then (the CHC home they are proposing is a Bupa one as well). We brought her home after 3 days. The same in hospitals and rehab. I will not allow my mum to go through an experience like that again and I certainly will not allow her to go to a home which 'needs improvement', according to the CQC and from what the report details, it is clearly not suitable.
Henrietta wrote:Just a thought that might put your mind at rest a bit if your mum ends up in the CHC preferred home, and that is that although your preferred care home said your mum was an ideal candidate, remember they would have been touting for business so would have been persuasive that their services were needed and useful for your mum. I am just wondering if your mum is needing so much care and has been steadily declining whether their services are more aimed at rehab? What positive benefits would they bring to your mum's care? At least if you think about this and get it clear in your head it will be easier to explain on Monday if that is what you want to do.