Continuing Health Care funding

[YouBigChump]

Has anyone applied and been successful in receiving this?
We're just starting and it looks like a mine field. It would seems lots of people just give up.
Any positive stories?

[MereDintofPandiculation]

It's very difficult to get. Speak to Age UK - they should be able to pass you to their second line support number. We've just been turned down, and Age Concern have referred me to consultancy who give advice on grounds for appeal on the basis of 90mins free telephone advice.

It's not enough simply to have nursing needs - they need to be complex or unpredictable, not the sort of thing you could train a care to do as a routine. But if you're turned down for CHC, there's a funded nursing allowance of about £100 a week you may get.

[YouBigChump]

@MereDintofPandiculation** thanks for replying. It looks a nightmare but I think we'll have a go.
DSis has found a firm of lawyers who will follow the process for you but it is very expensive. Good value if we finally achieve funding, but not we're unsuccessful.

[SnuffleBadger]

Full CHC is very difficult to achieve and in my experience only the most complex and unpredictable people have a chance of it being awarded. My main advice is to be realistic about what your loved ones needs actually are and if they can be met in an EMI nursing setting without the need for any extra resources then it is HIGHLY unlikely CHC would be awarded.

[SnuffleBadger]

Sorry, I thought you had mentioned dementia....clearly imagined that! The same applies for physical health needs

[KitKat1985]

Like previous posters, it's very difficult to get CHC funding for dementia. You would usually need significant other physical health concerns in addition to the dementia, or dementia with very severe and challenging behaviour to have a real chance.

[YouBigChump]

Thanks for the replies.
DM has dementia, cardiac problems and kidney disease so not very uncommon. It doesn't look hopeful.

[SnuffleBadger]

Though diagnosis is relevant the assessment is based around care needs. Unless your relative has severe behaviour issues or their physical health is very unstable I would be relucrant to pay out for a lawyer as you are likely to be left out of pocket.

[itsabongthing]

I would not spend money on a lawyer for this, honestly.

Just make sure that if they score high enough on the checklist to progress to full DST (assessment with a nurse assessor) that you are present and make the case as fully as possible in each domain for the highest applicable score.
Though as others have said, it is a strange system and not just as a case of having health needs or even nursing needs.
In terms of dementia, things that make it more likely to be awarded are if your relative is more challenging and intense to care for eg. If their behaviour is challenging, unpredictable or aggressive and the risk is very high.
A score of ‘severe’ in cognition and behaviour for example should normally lead to full CHC being awarded.
Happy to advise further if needed.

And if your relative is currently self funding don’t forget to explore local authority funding if/when their savings reduce below the capital threshold (usually around £23250).

[itsabongthing]

People I have known to have it have generally needed 1:1 staffing in a care home environment because of the intensity of their needs and the risks

[whitehalleve]

Don't spend money on a lawyer.

[stucknoue]

Yes, last year, it was ok. You have to be assessed as severe or high for most things and they cannot be able to do much for themselves or left alone. She was assessed as needing a secure environment and 24 care.

[stucknoue]

Should add her carer was 88 which helped I think, the nurse assessor couldn't have been nicer. It took 3 months from talking to them to funding (own budget) commencing. PM me if you want specifics on the application or managing a budget

[Blewitt]

If anyone is still around could I please ask what your opinions are on chances of this funding for my MIL. She had a large cerebral haemorrhage in August, operated on and survived. Has just completed 3 months of neuro rehab but due to severe cognitive difficulties which are all new from the bleed, (i am guessing this would be classed as vascular dementia?) they are not able to rehabilitate her any more. She is vulnerable as can't communicate her needs, PEG fed, along with some oral intake, double incontinence. Very passive in her nature, certainly no aggression or challenging behaviour. Needs two people and hoist to transfer, cannot sit unaided, needs turning at night. Just starting the route of funding for her, be good to get an idea of how likely it is she will get it. The cost to the family of meeting these needs is alarming. Thank you.

[MereDintofPandiculation]

It's difficult to say. This is from my experience applying for my father. It's not just about needing a lot of care, they look at whether it's unpredictable and complex. They say it's whether her primary need is nursing as opposed to "social" - feeding, incontinence, washing all are social. Turning at night to avoid bedsores isn't enough, but the underlying need, the need to take care of the skin and make decisions on day to day treatment is on the nursing side. If her condition is stable and just needs people to carry out the same activities every day, you're less likely to get it, if there is a need for a medical decision every day, you're more likely to get it.

The first stage is a quick questionnaire to filter out the no-hopers. If you get through that, your chance of CHC is still low. You can download the second stage application form and see what they're asking about. Google CHC framework tool.

If you don't get it, you should still be able to get the "nursing contribution" which is about £100 a week, and paid direct to the nursing home if that's where she is. But the home may assume you'll get that, and the fees quoted to you will take that into account -ie if you do get it, it won't make any difference to what you pay the home. I don't know whether you can get it if she's at home with carer support.

If she is at home; or if she is in a nursing home and entirely self-funded (no LA contribution), she should get Attendance Allowance at the higher rate, about £80 a week, not means tested. But she'll only get that if she's paying the full fees herself.

You say "The cost to the family of meeting these needs is alarming." If you mean financial cost, that should all fall on your MIL. And the LA will take over when her savings run out. So it's important never to understate her needs when talking to Social Services - there needs to be no doubt in their minds that she needs a high level of care, and a nursing home rather than a care home. My experience is that caring for her at home will be difficult as social services carers don't work at night. So you either have to do the night time turning yourself or pay for someone to do it, whereas in a nursing home she would get that night time care.

[MereDintofPandiculation]

And I forgot - do talk to Age UK. They have access to a government-funded 90 minutes of advice on completing a CHC form - best to complete the form first (Age UK themselves can help with this) and save the 90 mins for a final check over, or for help with an appeal.

Collect as much evidence as you can - what you say isn't regarded as evidence so get GP statements in support if you can, and keep diaries so you can point to dates and times. The assessment (the framework tool) will be filled in by two health professionals (in our case, one from the LA CHC team and one from the nursing home) but they should take your input too. Be well prepared for that meeting, and be firm in arguing your case.

[MereDintofPandiculation]

I realise what I've said is a bit muddled - it's not for you to fill in the framework tool form, it's the form they use, but it does help if you've gone through it and filled in a copy for yourself so that you're prepaed to put your case at the assessment meeting.

[Blewitt]

Thank you so much for your reply, that is really helpful. Despite all her needs I think they will probably be classed as social from what you have written. By alarming I mean using up all her savings, yes, she would be self funding to start with, but it still a very frustrating situation - she has been "saved" by the NHS but has been left with no real quality of life and now they are unlikely to help much towards looking after the end result of their care. I know that probably sounds awful, I don't mean it to, I am just amazed that someone with such high level care needs probably won't get ongoing financial support for it.

[Vanlady]

My MIL is in care home, only got CH funding when she kept being found on the floor in Care Home. Not their fault as they couldn't meet her needs Has both Alzhiemers and Vascular dementia, cardiac problems and malnutrition due to appetite centre of the brain losing function, incontinent of both and full care for all aspects of daily living.
As a nurse I know how hard it is despite all of these need it was 5 months from being in the care home before they agreed. Good Luck

[Blewitt]

Thanks Vanlady, glad she got the funding, sounds as though there might be some hope for MIL then. It is a bureaucratic mine field we are starting out on.

[MereDintofPandiculation]

Blewitt No it doesn't sound awful - what you're saying is roughly what I feel. I am outraged that I will be kept alive against my wishes, and then forced to pay for it too.

[HappyHammy]

You don't need to be kept alive against your wishes, you can draw up an advanced care plan and let family, your g.p. and friends what level of care you want if you become unwell or incapacitated.

[MereDintofPandiculation]

happyhammy But does that apply with dementia? The world is full of people saying "but at least your mum is safe" when what they mean is her physical body is being kept safe in order that she should spend as much time as possible living with a deteriorating mind. I don't want to be kept safe - I want to go as soon as possible, I don't want people to stop me wandering and falling of cliffs, or force me to eat, or take the tablets that keep me alive.

[HappyHammy]

I dont think dementia is a reason not to make a living will is it? That's why it's important to set them up when you're able and also power of attorney for health and welfare. Not sure you can stop people trying to stop you flinging yourself off a cliff. Guess some people just stop taking meds and food. Everyone has the right to refuse and stop treatment.

[MereDintofPandiculation]

It's not a reason not to make one, but I'm questioning its utility if you get dementia. You only have to read these threads to see the effort people go to to get food into you, and if they don't believe you have the capacity to refuse meds you don't get the choice. You can specify that you don't want the pneumonia jab, but you may be given it anyway to protect other people in the home.

I'm terrified.

[frostyfingers]

This is a very useful website:

caretobedifferent.co.uk/

We have used it a lot in our bid for CHC for our mother - still waiting on a result but we are not particularly hopeful even though she scored highly on the DST and was recommended for it by her Social Worker. It’s an absolute nightmare of a process and I sympathise with everyone trying to apply for it.