CHC/Difficulty Finding a Care Home

[Sally_17031]

My Dad has Huntington's disease and is currently in a rehab unit where he ended up in March due to my Mum not being able to cope any more as we think she herself has dementia. His condition means he has a complex mix of psychiatric, behavioural, cognitive, and physical needs. The biggest problem is he struggles to walk, but has poor impulse control, so will just get up out of a chair if the mood takes him and fall over. He also have very disturbed sleep and so can leap up and injure himself at any time of the day or night. Because of this the rehab unit have him under 1:1 care 24/7. He also suffers from anxiety and aggression and has lately been lashing out at my sister, but not to much the hospital staff. He has aphasia, so struggles to swallow and is prone to choking and because of the lack of impulse control has to be closely monitored when eating as he is prone to shoving too much food in his mouth.

We had the CHC assessment meeting a few weeks ago and he just qualifies for a nursing element of care at £100-and-something pounds a week. But my mum and sister have visited several homes and most can't cope with his needs.

The rehab unit are adamant that his condition means he needs 24/7 round the clock 1:1 care and have strongly suggested we appeal the CHC decision and are helping us do this as they believe we will struggle to find a home to take him with his complex level of needs.

Does anyone have experience of appealing the CHC decision? Does anyone have a relative with complicated needs who requires this level of supervision? How do you find a nursing home to take them? I am guessing if we can't find a place social services will find somewhere for him? We are awaiting to hear the outcome of the financial assessment from them as he has less than £23,500 in savings. Any help greatly appreciated.

[bowlingbun]

CHC is really only a big issue if you own a house and have lots of savings. It's a long drawn out difficult process.

As dad has below the Social Services (SSD) threshold, then they, not you, should be dealing directly with the rehab unit to find a suitable alternative. Ignore any comments SSD make about homes being "too expensive" or "above the amount we can pay" because both are unlawful. Also ignore any comments about "top ups" which are also unlawful.
From what you describe, dad should be in an EMI home, Elderly Mentally Infirm. If SSD are questioning whether they or the NHS should pay, then let SSD fight the NHS. I strongly advise you to stay out of it! What dad has been awarded at the moment is NHS Funded Nursing Care, not CHC.

For more information Googled NHS Continuing Healthcare Framework. Well over 100 pages!!!!

[Greta]

I agree with BB. I have fought on CHC and won, but it looks to me, apart from the financial situation (virtually everything has to be paid for for him anyway if he has no more savings than that), it seems that you father needs 24/7 care, but not necessarily nursing care - forgive me if I have shown my ignorance. It seems you have nothing to gain from fighting the CHC decision. If you won CHC for him, this would only be in SSD's interests.

[Pet66]

I'm sorry I can't attach the link, but if you Google
Care to be different, 17 untruths about NHS CHC it may be useful to you.
I'm sad to hear you are having such a dreadful time.

[Sally_17031]

Thank you so much for the replies. That is massively helpful and also massively reassuring. I find the system so confusing and that has helped hugely. I didn't realise that social services would look for somewhere as they suggested we started looking, which we did, but the care homes we have approached so far don't feel that they could meet his needs due to the 1:1 round the clock care he has at the moment. I think that I'll tell my sister to sit back and await the outcome of the financial assessment then. We are just finding it so hard how slow everything is as we are proactive people and want to get him settled somewhere. He has been in hospital since early March and whilst the unit he is on is absolutely amazing, it doesn't really meet his needs. I am honestly so grateful to this forum. Thank you.

[bowlingbun]

Social Services must take responsibility. The unit where dad is should be nagging Social Services, so it sounds like both of them are trying to get you to do their work for them!
I suspect the real problem may be that all the local homes are full. My authority, Hampshire, has a website section where you can see which homes have vacancies in the area. There are lots of care homes in my area, for those who can manage most of their own personal care; not so many nursing homes, which have to have a qualified nurse on duty at all times and will accept patients who need help with all aspects of personal care; and even fewer EMI homes, for the elderly mentally infirm.

[jenny lucas]

Two thoughts, neither of which may be useful, but just in case, here goes.

I wonder if you contacted the support charity for Huntingdons (which I assume exists in the UK?) whether they would have a list of homes 'nationwide' that are suitable for Huntingdon's patients? Or if they have a forum for patients/carers, you could ask there directly. Sadly, I assume other H patients are also finding it hard to get the residential accommodation they now need....

Secondly, would getting in touch with your local hospice help at all, do you think? They might be able to guide you at least through the 'when the time comes' conversation, and they may have insight into the 'before that time comes' period?

Apologies if neither of those is useful.

[Sally_17031]

Jenny, those comment are both helpful and useful, thank you. I had contacted the HD charity and they had suggested one local home where they specialise in HD and have 12 patients currently, but social services have already said that it is too expensive and if my sister and I want to consider that, we will have to top up the fees ourselves, which we haven't really got the funds to do. From the advice of others I think it is a case of sitting back and letting social services to do it, which isn't really in mine or my sister's nature and it is so hard to see him in the wrong place for so long. I feel so sad that he is clearly one of many, many elderly people who are stuck in this creaking system and no one gives a damn about their dignity or happiness at this stage in their lives. Sorry, rant over!

[bowlingbun]

This is where you need to think "tactically". Don't ring Social Services, ALWAYS email them, because I have found that they can be very economical with the truth.
They know it's unlawful to ask the client to pay a "top up" unless it's for an extra large room or similar, but they CAAN ask relatives to pay. DO NOT UNDER ANY CIRCUMSTANCES ever agree to this, even for a "few weeks".
However, they also know that they must find a home in the area close enough for friends and family to visit, because of Human Rights.
So email them and say you would really like dad to go into the home in question, be sure to name it in your email. Ask them how much it would cost for dad to go there, and how much the top up would be that they expect you to pay?
Then ask what alternative homes are available in your area which they would pay for in full?
Be sure to ask them to reply in writing/email to you so that you can share it with other members of the family.

Once you have all this information, you can then go and look at the home they suggest, if there is one. If it's not suitable, you then write to the Complaints Officer and say they are acting unlawfully.
I'd strongly recommend getting someone else to support you through this. My son has recently been granted Legal Aid to challenge our LA. This may be an option for dad. Alternatively, see if he has "legal expenses insurance" on his household policy, or similar.

[jenny lucas]

Sally, that home with other HD patients sounds obviously the best. Others here can guide you round the issue of 'who pays' but as you know, top up fees are 'illegal' (though that doesn't stop LAs trying it on!).

Also, surely, given that HD is a clear and obvious 'illness' - no question that it is a 'social' condition as dementia is deemed to be ! - then surely any 'top up' should be paid under CHC??? (ie, the NHS)

Even my MIL with dementia, who has to be self-funding as she is (for the moment!) over the LA threshold, gets some of her fees paid via CHC, as it is deemed to be the 'nursing care' element of her residential care.

What does the home itself say? Presumably they are well versed in what can be done, financially, for HD patients, and you may find that they have good advice from their own experience, and that the families of their HD residents do too?

I think (though others more experienced here - including, don't forget, the team of experts at Carers UK itself - best to email them) that an LA is not legally allowed to place a resident in a care home that is 'unfit' to look after their particular needs. This might be an avenue to investigate if the LA are giving you the names of homes that cannot cope with HD residents.