So...Dad has been self-funding for six years now and the money from the sale of the house is pretty much all gone. I need to move him out of the madly-expensive residential home he is in and find somewhere new.
I asked the NHS to assess him for CHC funding and, although he scores high on some components, he doesn’t need nursing care YET, just pretty much 24 hour supervision, help feeding, changing, two people to get him up and help him move etc...However as we all know nursing care WILL be needed soon, it’s a case of when not if. With this is mind I’ve asked to put him in a nursing home. The council have agreed, in theory, but so far have offered me two places - both are an hour away from me on public transport (I don’t drive), I visited one and it was OK-ish, but it was a bit smelly, which is depressing. I asked about a local nursing home, near where he currently lives, and went to see it, its lovely, but the third-party top up will be £387 a WEEK! And that’s more than I even earn. I’m so depressed. I don’t know what to do. The borough where I live only has three nursing homes and is seriously strapped for cash.
Is there any way out of this? I’m so stressed that he’s going to end up somewhere not that nice that’s so far away I’ll only ever be able to visit on a weekend. (I work and have a six year old So no evening visits.)
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It's late so I am just doing a quick reply and I will reply further, but more information would help. I' sure there are solutions here.
Can you give more information.
What are the risks? Does he fall? Does he have difficulty swallowing, is he liable to do things which are risky?
£387.00 a week for a nursing home is astonishingly low... I would be worried about the level of care they could give on that. Typically a residential home is £600.00 and a nursing home comes in at £800.00 to £1000.00 in my neck of the woods.
Don't panic... From what you are saying means tested Soc. Serv. funding should cover it all.
Just post a little bit more info. and I will try and give you some solutions to try.
Best to you
Kevin
Edit: I misread your post - Third party top up £387 per week... Got it.
Hi Kevin and thanks for your comments. He is not able to do much himself now, he needs two people to help him get up and support him while walking, although sometimes he can walk ok once they get him going. Other times he is stiff as a board. He regularly falls when he tries to get up or out of bed alone, he’s never mastered the buzzer for staff so has mats down now which alert them if he tries to get up.
He doesn’t have problems swallowing yet. Thanks goodness as food is his main joy in life now! He does mostly need help feeding though.
He occasionally asks to go to the loo, but only if someone is around talking to him, he wears pads otherwise.
So at the moment I’d say, high needs but not complex. He isn’t challenging at all behaviour wise. It’s just that I know the worst is coming and don’t know how soon, I would hate to move him to a residential home that the council could afford and then have to do all this again in six months. For his and my sakes! It’s doing my mental health no good at all worrying about it.
He has done well time-wise, he has gone from carers at home for a couple of years, to four years sheltered accommodation, to two years where he is.
I’m real terms I’m the only person that visits him, as an only child. He has the odd friend that pops in once in a blue moon and his sisters live in the Isle of Wight (we’re in London).
Yes, the whole funding and care thing is a big stressor. You will find many posts from folk highly stressed with it. Including mine!
There are a number of options here and they are not mutually exclusive.
1 Talk to the home and see if they have a cheaper room. Tell them that he may not be able to continue to afford the top ups. Homes very often have some slightly smaller rooms which are a lot cheaper.
2 Talk to Social Services and say that his ability to top up is nearing an end and simply ask if there is anything that can be done to keep him there. Best practice is not to disrupt a successful placement. The other very important thing you can do with Soc. Serv. is to ask them to assess his needs with a specific focus on whether his care falls within the Social Services 'legal limit'. This is the dividing line between Soc. Serv. and the NHS CHC funding. If the Social Services decides that his care is beyond their legal limit they are not permitted to fund care and the NHS is obliged to fund it under CHC. I know a few people who have got CHC funding in this manner.
3 Revisit Continuing Health Care. Unless you have gone through the DST scorring then don't be too sure he doesn't qualify. It is common for CCG's tosay it's all social care when the person does actually qualify. His falling immediately get's him a score which if there were three other issues of similar gravity he would qualify. Continuing Health Care is a two stage process. First the Checklist Assessment and then the DST (Decision Support Tool). Did he have a DST? If so you are entitled to both a copy of that and any documentation submitted to the funding panel. The DST is not a complicated thing and you can download it and score it yourself to check that their scores are reasonable. It is quite common for them to score unreasonably low. I can help you with this if you want to go down this route.
4 When CHC funding is refused the NHS is obliged to consider funding those parts of the care which falls into their domain. They then give Funded Nursing Care. This is funded at the rate of £213.32 to £217.59 per week.
Oh the place he is in now is about £1200 too! but that’s just residential, if I could afford it he would stay there until the nursing needs became more pressing...
I know this may sound harsh but your Father should be means tested and not you. If he has used up all but £23,000 of his savings then the Social Services should pay for his care and not be emotionally blackmailing you for any top up. It is their responsibility to place him in a suitable location. He has contributed the maximum he can. Kevin is a wonderful source of help and I recommend you check his previous posts. I wish you well. Rob
I expect you were already aware of that and it is a difficult situation.
Do come back answering the questions I asked about risk and nursing needs. It is not at all uncommon for CCG's to bend the rules an describe the needs as social care needs and not medical. That decision can be challenged, but I know nothing of your fathers needs and so cannot give pointers on that until I do.
The dementia society said they could suppor with CHC applications Mum has CBD with the hallucinations and memory loss there may be help out there to push the CHC your way ?
The big question is to what extent do they give realistic advice on hoe to get it, rather than just advise about the stages and where to apply.
e.g.To what extent do they advise on how to actually fight for it.
Sadly all of the main associations don't do this, they work of scripts which are good, but which have faith in the system, CAB work like this for example. (Faith in the system includes things like how to appeal.)
The problem with some agencies is they just give a little advice, or information.
Getting CHC is often a struggle and if they don't have CHC trained and experienced people then they are just steering folk in the right direction which is not worth a lot when it comes down to the DST.
I'm not knocking your idea, but it would be good to know what their level of advice and advocacy is. This could be a valuable resource for folk.
The place I am coming from is, for example, the information given by Age Concern and the PSP Assoc. Their articles are clear, precise and informative, but they miss key things such as how to prepare for a DST and how to argue the scoring. To get CHC most often requires a very informed and firm stance.
Please come back it would be good to know.
Waiving and hoping all is good in your neck of the woods.
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CHC funding uk based 
Advice, reassurance or tips! 
Trying to find a care facility, not as easy as we were lead to believe.
New here - my father has PSP
