Has anyone successfully obtained CHC funding for a relative ?

[gunnersgold]

Thanks in advance

@Schooldil3ma I did it because Im speculating and feel it's worth the risk based on what we are currently paying . She will run out of money at some point . I'm well capable of a 'fight' with services as I have a child with SN and have done so but I am exhausted from my Mother and feel it best for my family that I let someone else do it ..

Care is such vasts amount of money I feel it's worth the risk .

I am the sort of person that will be buying an annuity with proceeds of her house if necc because I have one job and that is to make sure her care is covered for life and not to worry about if there is any inheritance left ✅

We got it for my Grandfather who had a catastrophic stroke and was left bed bound. My Mum completed the form but she did have to fight - when they came to do the assessment they tried to get away with not actually seeing him, but she insisted they did. I'm sure the payment was backdated.

Yes, I have successfully argued this case multiple times on behalf of a family member since 2012.

CHC isn't a decision for life. They can and will review you. I fought this case every six months for 8 years. I understand you have engaged a lawyer (I could not afford this so did it myself.) I do think it's wise for you to be across the detail of the case once it's done, to do the next one if it arrives.

There are 12 domains and you must show either

• a priority need in any one domain with that ranking attached
• two or more instances of severe need

There is a Decision Support Tool that the team will be using and they must share this with you, so ask for it.

It is possible in some circumstances to win the case if you cannot show either priority or severe need but a large spread of high needs combined with complexity or unpredictability in the domain. An example of this might be something like repeated low level urine infections which cause full body spasms which cause massive falls or injury risks. Treating the UTIs promptly is an example of complex, not routine, nursing care.

Well managed needs are still needs, and this was proven in the Coughlan case. The most common reason for qualifying applicants to be denied is their well managed needs are wrongly assessed as low needs. This is the main thing to watch out for.

Good luck to you.

Yes they back pay from the start of the case . We are only 4 weeks in and have already spent £7k on her care ( 24 hour) .

Hi OP, have you downloaded this yet?

www.gov.uk/government/publications/nhs-continuing-healthcare-decision-support-tool

Then make sure you insist that you go to the assessment too. We met the assessors and went through every line of the case.

You need to treat this skeptically and without emotion.

Print a copy of the DST so you can see it all at once. Go through it and give two scores to each item - a best case and a worst case score. Go through and work out whether she's eligible on the basis of the best case and the worst case. I don't know what compass provides for your 5k but this might be a useful thing to do with them. Then work on making sure you have evidence for each of the items - either through medical records, police records if they've been really violent, social services etc etc. A lot of the evidence will come from the care home - the thing to be aware of there is sometimes care homes have lower rates agreed with the LA so it isn't always in their interests to ensure their patient receives CHC so you need to make sure they record everything accurately over the next 4 or so weeks.

Once you've done the DST yourself you need to be really honest with yourself about if you think they will get it - the bar is really high. Also look at the mechanism for appeal etc.

They don't always back pay. It depends on the history. For an elderly person in crisis, then yes it's more common, but just for anyone reading who is fighting for a child or long term disabled person, it's rarer to reclaim costs from a previous Fairer Charging for Care package.

I am using Compass , they pull all the files together and put your case forward , then appeal if necessary.

As above I am happy to pay £5k and accept I may lose it it but I am a planner and a fighter so can't just let her be at the mercy of the LA decisions unless I can help it

I got it for my dad when he was v ill in a nursing home. I also used to attend the assessments in my job as a social worker, we were asked to attend by managers to see if we could advocate as it is in ss interest if health takes over the care costs. I argued a lot with the nurse assessors...esp over 'a managed need is still a need'. It felt like a lottery, some assessors better than others. I'd agree with appealing decisions. Also important to argue unpredictability of care needs.

Yes, I got it for DD - with a life threatening condition, no short term memory and challenging behaviour. Her care is 6 figures, and social services told me a couple of weeks ago, double that would be reasonable for someone as complex as her.

Have you looked at the Decision Support Tool? It's very clear and if you aren't scoring then there is not a lot of point applying.

Keep in mind that what you think is an A, the assessor may well not - it really is the very severe end of the spectrum that are qualifying. I've successfully argued it for patients with complex neurological illnesses but even then you often have to wait until they have progressed a lot to score in multiple domains.

There is also the Fast Track for those with a prognosis of less than 3 months, however if you survive more than 3 months it will be reassessed and I've seen funding removed if people have really got better/stabilized.

@Blushingm

It is awful. I was shocked - I kind of 'knew' it was bad but until you see it for yourself. My DM died on Saturday without having had a single care visit.

OP is pretty clear they will not look at the tool and are not interested in this advice as they are leaving it to a lawyer. This is obviously totally fine, but renders this thread a bit pointless, as well meaning commenters keep giving advice on pursuing the case.

Actually I have looked at the tool and done a lot of research and decided to speculate and let them try as I have soo much other stuff to do with my mother !

My question was has anyone got in so I was looking for positive outcomes as the NhS just shut you down when you ask !

I was initially told by a HCP that only life limited people get it when that is clearly a lie so I wanted real life examples of success so I know they exist !✅

The changing/unstable nature of a condition is really important. My relative had dementia but no other health issues. Her behaviour was erratic and she required/demanded the attention of carers in her nursing home constantly. Eventually she was sectioned and removed to a hospital dementia unit for treatment and was stabilised with anti-paychotics (I wasn’t keen but her life was torture for her without them). She then received a different type of finding - think it was called Section 38 - but prior to that she received full CHC funding.

Our lives have turned upside down in the last few weeks. My mum has gone from being independent to having a stroke and now vascular dementia needing 24 hour care ..
I have to sort her fiancés , her care , her house/ garden and all her hospital appointments .
On top of this she is angry with the world ( me) and in denial . Thinks we are making stuff up to stop her doing things because her poorly brain is telling her that .
Because she has some assets she has to pay which I accept but I want to make sure she has support in place as she is only 77..
Her care bill is £2000 a week and to be fair in the grand sack £4/5k is nothing to give it a go ..

I know I might lose it but she will lose her life savings and everything she worked for anyway so 🤷‍♀️

@WarmBeerAndSandwiches thank you , that is exactly the answers I was hoping to hear !

@gunnersgold you’re very welcome, I hope it helps. Good luck! Having been through it all I know how hard and exhausting it is. Look after yourself, remember you can only do what you can do.

my child gets continuing care funding due to extremely high medical needs but that is only the start as there is such a shortage of carers available that it is v hard to find an agency to deliver it.
for example our son was given some hours to enable him to return to school with medical support as he has been at home for over 2 yrs now as his medical needs are too great for even a special school to manage. The hours were approved in dec last year but we still haven't had a single hour. It has taken this long to find someone who wants the hours and now we need to train them to carry out all interventions.
The system is at the point of collapse frankly and it is a national scandal that is largely being ignored whilst families are left to cope as best they can.
And adult care is even worse I think .
Anyway on a practical note you need to get the criteria and amass as many points as you can in each area to stand a chance. Good luck x

Its really difficult reading this thread as someone who does these assessments (as a social worker).

there isn't some big conspiracy around who gets it and who doesn't. Any decisions made on that assessment are scrutinised higher up so if it's been put through without enough evidence questions are asked of the nurse assessor.

Evidence is absolutely essential. Everything that is being claimed has to be backed up so the single most important thing you can do before spending £££s on legal advice is check that the care home are writing everything down about any complex care they are providing. If there are e.g difficulty feeding or giving meds they need to be writing it down and recording it in the MAR charts.

Continuing Healthcare is awarded to people who's the nature of their care needs are so complex, unpredictable or intense that their care cannot be provided within the existing structures of social care and the funded nursing contribution that anyone already gets if they have any nursing needs requiring nursing care in a care home.

The vast majority of people's nursing needs can be met by the funded nursing contribution which means the NHS is still fulfilling its duty to provide free at the point of access medical care. CHC comes into play when e.g someone is needing 1:1 nursing care due high falls risks, or challenging presentations, or perhaps needs more than two staff to do hoisting due to high risks of breaks on movement or requiring careful positioning due to contracture stress or again challenging behaviour. If meds aren't routine and require a nurse to make a clinical decision daily about how much to give that would also be above and beyond routine care.

The CHC checklist sets the bar pretty low to ensure that it picks up anyone who may have any nursing needs. The Decision Support Tool though is much much more in depth.

Thats the key really, think about what are the care home, carers etc doing which is 'above and beyond' normal nursing care.

It's very difficult for people with dementia to get CHC funding as unless they have extreme challenging behaviour - of the sort that gets you admitted to a mental health bed, or another medical condition that scores points on the DST, they won't qualify.

I would say your mum is not 'in denial'. As you rightly put it she has a poorly brain. She doesn't remember the things you tell her so to her poorly brain, there is nothing wrong with her but the world has stopped making sense.

From this perspective it isn't really surprising that she is angry as her brain is saying 'Obviously I can sort out my finances, if they have gone wrong it is someone else's fault' from here it is not far to thinking there is a conspiracy to stop her sorting out her finances, you are stealing from her or whatever.

Agreeing and then changing the subject is the best way forward as trying to persuade her poorly brain of reality is going to enrage both of you.

@AnnaMagnani yes I'm learning quickly . We have had a few run ins because she has accused me of stealing everything when in reality I'm trying to keep everything safe and retain her dignity !

It's the most awful thing to watch .

We have had to remove her mobile phone because she was texting her friends telling them I was a thief and a terrible daughter when I'm neither . Poorly brain or not I'm not accepting this because some of them believe her .. she is very convincing to be fair and I know often doubt myself when she goes off on one about hospital appointments and what is happening on set days !

My brain is absolutely fried from the upset and organising and I have a child with sn who is off school obvs at the moment ...

I will soldier on and do my best for Mum regardless wether that be chc or self funding with an annuity or selling her house and finding a cheaper option so she can stay at home longer ..

I will do whatever it takes as I promised Dad before he died I would look after her and I will .. Dementia can do one though , awful awful disease ! 😔😔

Do you have lasting power of attorney for finances and health and welfare for her?

If her needs are so severe how has she ended up in a care home with no social worker?

is she on a DoLs?

@gunnersgold it is a horrible disease and some friends can be worse than useless.

I used to look after someone who was cared for devotedly by her husband for many years. She would phone all her friends and tell them he was having affairs left right and centre, and they all believed her despite not having seen her in person to see how bad the situation was in years.

He never left the house as her care was all consuming so goodness knows when he had the time to have all these affairs, 2 seconds thought would have shown it was nonsense but no-one ever did that. He knew all about what she did and that all her friends thought he was a monster, it was so sad.

Yes I have PoA , she has no social worker , we are self funding .
I have asked for a sw and nothing has happened yet !

If you are self-funding, Social Services will leave you to it.