Continuing Healthcare Funding

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Does anyone have experience of successfully applying for continuing healthcare funding? My Dad has had mixed Dementia since 2015 and has been cared for at home, by my Mum, with me supporting both of them quite heavily. My Dad is 91 and my Mum is 89. Since last year he has been expected to die within six months and it seemed that we could continue to care for him at home, with the help of daily carers, paid for by us, for personal care. However, since Christmas he has rapidly declined and is at the point where he no longer recognises either my Mum or me and his behaviour has become very challenging, especially at night, when he rampages around, trying to escape, trying to get in the loft, behaving in a destructive and out of control way, which cannot be challenged or stopped because he cannot understand anything that is said to him and he gets quite nasty if we try to intervene, for his own safety. Hard to believe as he is now very thin and frail but he is like a bull in a china shop.
The hospice at home nurse has now said that he is now a danger to himself and my Mum and we need to get him into a suitable care home. Care homes in this area cost around £1600 per week, which is surely an unthinkable and unaffordable sum of money for most people.

I have been frantically looking into this and as far as I can see, from looking at many, many websites, it is extremely difficult and probably impossible, to be accepted for this funding in cases where Dementia is the primary reason for needing to be admitted into a care home. Even the hospice nurse said that he would not meet the criteria for funding, even though he is at the end stages of Dementia, has zero capacity, he cannot make any sense when speaking, has no awareness or understanding of his own behaviour, his surroundings, how to care for himself, he needs help with personal care, dressing, preparing food and getting dressed and undressed and so on. He cannot, under any circumstances be left alone, even for a short time as anything could happen and now he has some kind of nocturnal psychosis on top of the relentless wandering around causing chaos.

I'm sorry if I haven't included any relevant information or if this is too long but I am at my wit's end after almost ten years of this and feeling very stressed.

Thank you for reading, if you have! I would be very grateful for any advice, insights or opinions.

This is a useful website discussing CHC and who is awarded it.

https://www.farleydwek.com/checklist-assessment/?gad_source=1&gclid=Cj0KCQjwudexBhDKARIsAI-GWYWGbxH9sxLft2txUYA2bZ3SvGsJqp-gcW1ePd5T8KaWLNotVeRP5IcaAlJ1EALw_wcB

Only one in six applicants succeed with an application but anyone can apply. There is an assessment by a local assessor and dependent on the outcome of that, the decision goes to panel for final yea or nay. Even if granted there will be a review in three months and a further review each year.

Yes I helped my mil apply for this for my late fil. He had dementia and was living at home. He kept leaving the house alone and falling over. He fell in the shower and couldn't get up. He was also eating teabags.
This meant he was a danger to himself.

He was becoming incontinent and losing his awareness.
It was a battle to get him assessed but he met the criteria.
I think the care home was funded by social services for around a year.
By this point he had sadly deteriorated. He was immobile and this meant he was no longer at risk of falls etc
The funding was removed at this point as he no longer met the criteria.
So be aware it's temporary even if you manage to get it.

You can of course apply for CHC but it's likely he won't be assessed once admitted to care.

If he can't afford care (so if his half of his savings/ assets is under £23,250 then he will be entitled to support from adult social care. I think a good call would be to contact your local adult social care Helpdesk and ask for a financial assessment.

His health (not social / care) needs need to be complex and unpredictable to meet the CHC funding threshold.

You may be able to get part of his care costs paid for by funded nursing care but that will need to be assessed. Can you continue to cope caring for him safely at home? If not he may need to be admitted to a mental health ward for assessment and treatment before a suitable placement can be found.

Thank you so much for taking the trouble to reply, this only came to a head on Friday so I am under pressure. I will take a look at the website @FlipFlops4Me

Good to know @Hellenbach that even if successful the funding can be removed at any time, if it is deemed that he no longer meets the criteria in the future.

Also, @NerrSnerr good to know that if he is admitted to a care home he may not be assessed at all. Currently I have a breathing space of sorts as there are no care homes willing or able to take him, so he is still at home.

@Muchtoomuchtodo At the moment he is wildly unpredictable and I think complex because Dementia is an incredibly complex disease (but I accept maybe not as complex as others that I am unaware of) We would definitely like to continue to care for him at home and to keep him safe, even though it is an uphill struggle as he needs to be supervised all the time and both my Mum and I are exhausted after all this time, my Mum especially as she lives with him and is getting no sleep.
I asked if his medication could be reviewed as he has recently been prescribed stronger Morphine, as a continuous release capsule, rather than a low dose of Oramorph and this psychotic behaviour began after that. He has now been prescribed three entirely different medications, an anti psychotic drug, a Benzo and a strong pain killer, as of last night so I am interested to know if the Morphine tipped him over the edge and caused the paranoia, aggression and dangerous behaviour?

It is very hard not knowing how long we may be managing this roller coaster, not least because it is horrific watching him deteriorate and suffer like this. He is living in abject misery and fear because of his hallucinations, false beliefs and agitation. He has no quality of life because he doesn't believe that he is in his own home and is constantly trying to "get home" he doesn't recognise any of his family or friends, he cannot hold a conversation or understand anything that is happening around him, he hates the television, the radio and any kind of lighting, it's all too much for him. But that's off topic.

I'm.so sorry your going through this, we were in an almost identical situation last year. We were being threatened physically and verbally, DF was wandering and even searched a neighbours house looking for DM. It is one of the hardest things we have ever been through. In the end DF was sectioned for our own and his safety. Another end of the section (8 weeks) we had a meeting where I said surely he must meet the criteria for CHC and the Dr said no! Yet everything I read seemed to be to the contrary.

Funding DF in a care home would have only been possible if we used his share of my parents home but during the time we were waiting for a care home space DF deteriorated a bit more and they then agreed to CHC thankfully. What I did find is not a lot of homes will take the difficult patients or CHC. Df place was found by SS but it took months of calls and emails.

I'd start by approaching SS and asking for help but be prepared to have to push them if you don't get a decent SW

I was under the impression that if you had been sectioned you were entitled to free care?

Only a section 3. If someone is on a section 2 (which is for assessment) they won't get 117 aftercare.

We got full CHC for my dad when he had dementia.

However his was slightly different to your dad's. He was only in his 70s. He was doubly incontinent. His dementia had caused aphasia (inability to speak) so he had no way of communicating any needs. He had severe asthma, diabetes and high BP and refused all medication. He wore dentures, but wouldn't wear them and couldn't comprehend that he needed to wear them, so he struggled with eating as he had few teeth, so was an aspiration risk. He was also a tall man and was reluctant/resisted personal care. He was also very susceptible to falls.

He was sectioned prior to the care home admission and we knew he could never come home as my 4ft11 mum couldn't care for him.

All in I think he had 1 severe and 3 high risks, so got full CHC.

The process was grueling and I hated every second, but it was worth it as we didn't pay a penny toward this £1800pw care.

However that being said, there was no choice where he was placed. The care home wasn't great, but thankfully local to me, and we lodged several formal complaints and were refusing him to be discharged there from hospital following yet another fall, when he died.

So yeh, it's doable but has to have a lot of comorbidities/complications.

Complex care needs means lots of different medical care needs not just one which is why Alzheimer's on its own is not enough. Your father would probably also need to have several other medical issues like diabetes or asthma or some other chronic conditions which needed managing in order to qualify. That is why it is so difficult to hit the qualifying points.

One of my neighbours had the same with her husband, he thought she was an intruder and became very unpleasant, she had to call the police. It got sorted out after this event, he was taken to hospital and then transferred to care home, one that had similar types of patients.

They both are a lot happier for the time being.

Thank you. I have a long way to go before I understand all of this!

It’s incredibly hard to get and no one ever seems to want to do the checklist. We just got it for my grandma but that’s mainly because we are in to very end of life care (couple of weeks) so on the palliative pathway, mum is a matron and I work NHS so we knew what we were doing and was still an uphill battle! Good luck but you need a needs and financial assessment as your first port of call.

If they suggest he has less than three months to live then fast track funding may be an option

My DH has vascular dementia and has just been granted full CHC. He is in a care home but he had 3 severe, 3 high and 2 moderate risks in the assessment and requires 24 hour 1 to 1 care both for his safety and that of other residents. The assessment was long, incredibly detailed and very thorough. He'll be re-assessed in three months and if his CHC funding continues after that assessment there will be another in a year. The MDT panel that makes the decision also took his medical records into account.

I wasn't sure we'd get the funding but his social worker and the home's manager thought he would qualify.

If you have a social worker do get them involved as they can be extremely helpful.

We didn't use a specialist service - the social worker filled in the initial application and then the assessor came to the home and went through the ins and outs of a ducks arse to get every tiny detail about my DH recorded. The report is very long and thorough.

Any change in my DH's needs must be reported to the CHC funding people so they can assess whether it changes his entitlement to CHC.

My DH has type 2 diabetes, can be difficult (very) with toileting, often refuses meds, is liable to get violent with no notice and is terrified of loud noises (which also flip him into violence).

What I’d advise in your situation is probably controversial. I would tell your DM to phone 999 when he is behaving in an extreme manner, and insist the paramedics take him to hospital for a check up. Once he is admitted there, which he likely will be if his behaviour is so challenging, he will be in the care system and will have to follow the discharge to assess pathway. He will remain in hospital until the discharge team find him a place in a care home. All this relies on your DM and yourself being adamant that he cannot return home in his current condition.
It’s heartbreaking that end of life care for dementia sufferers is so fractured and brutal.