Appealing a decision on Continuing Healthcare

[minmooch]

My brother and I are appealing the decision that my father is not eligible for CHC. We have employed a company to fight his case.

Will update as it goes along if anyone is interested and to share our experience.

Not holding out any hope but think it's worth fighting for him and for others in the same situation.

Good luck minmooch. Think your estimate of chances of success is about right. The system is unfair. Either you're assessed as having a "primary health care need" and then everything including personal care is paid for, or you have a medical condition, a disease like Alzheimers, you get at most a nursing care allowance of about £100pw and find yourself paying £600 - £1000 a week.

Good luck, my dm, who has dementia, has been assessed as borderline, but did not qualify. When i questioned the decision, i was told it's very difficult to get it, 'the patient has to be almost dead' was one health care professional's way of describing how hard it is to get.

I'm appealing at the moment but don't hold out any hope really. I consulted two legal firms who were both very encouraging but ultimately they wanted £5k+ to take on our case.
I decided to do it myself, I'm appealing against the actual decision but also the maladministration of the application.

I wasn't going to bother appealing but I got so fed up with the lies told by the "professionals" involved, one last comment pushed me over the edge and I decided a big fuck you was in order.
I sent my appeal in a month ago and have yet to hear anything except that they have received my documents.

I think it's definitely worth fighting for, even if it's just for your own peace of mind. Our relatives with dementia cannot stand up for themselves, they need us to do it for them. The whole secrecy around CHC is shocking, it is meant to be open and transparent and we have found it to be anything but that.
The more people that know about it the better, the more people that appeal the better.
We trusted the professionals knew what they were doing, and that they were telling us the truth, they weren't.
I'm currently banging out Freedom Of Information requests regarding CHC funding.

That's what I believe @Hallin that the more people who appeal the better.

It seems very often that they make a decision for eligibility on diagnosis. So if you have a diagnosis of dementia then you are unlikely to be awarded CHC. And yet CHC should not be awarded/declined on the basis of diagnosis.

They said my Dad was in the right care home and therefore not eligible.

I am fighting that I am not questioning the care home it's whether his needs make him eligible for funding.

It's all in the words and it is so far biased against those who can least fight it.

Biased is very much the word. We've met a stream of HCP's in the last couple of years and not a single one has supported us in our request for CHC. Even if they aren't supposed to help us get the funding I would have expected them to remain neutral at least, in our experience it's been the opposite.
The nurse assessor who told me that my dad did not qualify actually looked delighted when he gave me his decision. There was no attempt to hide his smugness.

I would have expected that people go into nursing or social work because they actually want to help the sick and vulnerable. We have been shown no compassion and have received very little in the way of help either practical or emotional.

I don't want to go into much detail on here with it being an open forum but I will give updates when I hear anything regarding our appeal.
I'm going to spend the rest of today reading through the National Framework again, the more I read up on the subject the more holes I can see in the administration of our claim.

If anyone is at the beginning of the path of a relative with dementia the one single piece of advice I would give is to record every conversation with Social Workers, nurses etc. Either get a voice app set up on your phone or buy a mini recorder. No matter how smiley and friendly the HCP's are to your face ultimately they are loyal to their bosses and they will not hesitate to lie and throw you under the bus when it suits them.

I agree about them lying. I sat in on a meeting where they fill in the assessment form. At the start of the meeting the hcp informed me that the funding had been approved and that this was just a box ticking exercise. I double and triple checked that my mother who had been self funding up until this point, would now have her care home fees picked up by 'them'. The hcp insisted that my mother would no longer be paying for her care, it would be picked up by either social services (social worker was at the meeting), or the health board (who she was representing). Surprised, i allowed them to complete the form and perhaps did not push as hard as i would have done on some of the borderline areas. At the end of the meeting, the social worker then informed me that she needed to make a phone call to clarify what the hcp has said at the start of the meeting. When she returned, surprise, surprise, it turned out that the fees would not be paid for by the social services and that my mother would continue to be self funding.
I don't object to her paying for her care, those are the rules - fine. But the lying to my face, was so unprofessional and downright wrong. When i questioned the hcp about what she'd claimed at the start of the meeting, she shrugged it off and said it wasn't her area of expertise.

I would be interested to see how you get on. Did you disagree with the scores or with the decision that the scores didn't constitute a primary health need?

I've done hundreds of CHC decision support tool meetings over the years and I can only really recall a handful of occasions where I disagreed with the nurse assessor's overall decision.

I've seen lots where families have disagreed with the decision and it's usually because they haven't understood that it's not based on the scores but the four tests of 'nature, complexity, intensity and unpredictability'. It's not about the health need it's about the impact of that health need and the level of care required to meet it and if that care cannot legally be provided by social care.

I think what some families see as lies and lack of transparency is actually a failure/ inability by the NHS to implement a fair and simple system. It's too complex and too subjective.

In our case it's definitely lies. I've had phone calls from social workers, been given false information from them, they've then denied having the conversation with me. So not just telling me I've misunderstood, they've actually said they didn't phone me, "What phone call?".

In my experience the people involved will always believe other SW/ HCP over the family, they close ranks. So one lie becomes several lies because they don't investigate for themselves whether their colleagues are correct. It's layer upon layer of it.

I actually feel embarrassed for some of the people involved in our case. I can't imagine being so utterly shit at my job that I would behave like they have. A social worker denying ever having made a phone call to someone, with absolutely no idea that the person they spoke to has maybe recorded the entire phone conversation. It's shocking.

In my case we, the family, disagreed with the scoring. The care worker who looks after Dad agreed with us. Social worker on the fence. The CHC assessor made the decision to score a High as opposed to a Severe. If that had been a Severe he would have been eligible for funding. We believe they should take into consideration the views of the people wHi look after my Dad on a day to day, hour to hour, minute to minute basis.

If that had been a Severe he would have been eligible for funding
not necessarily. As I said above it's not the scores that count on the DST (it is on the checklist), the scores just to give an indication of need.

What counts is the level of unpredictability, intensity, complexity of those needs combined.

Also, most of the CCGs now require written evidence, not just people's word for it. The assessor needs to see evidence (care records etc) of e.g challenging behaviour on the scale that is trying to be stated. The care providers can say until they are blue in the face what the needs are, if they haven't recorded it anywhere it doesn't count.

I'm absolutely not defending the CHC process, it's often poorly explained and administered, but it's the system we have for now and there's no point spending ££££ on legal advice if what is actually needed is better recording of evidence.

Which domain was it you feel was scored wrong?

@hatgirl his behaviour. There was little written evidence of incidences, despite mental heath team being called out and ECP for other residents. We are arguing this as well. Social Worker was extremely cross that she/SW had not been informed of the last three incidences.

No ABC plans out in place.

Each time there is an incident now I make a note and write to SW.

There was little written evidence of incidences

and that will be the CCG's defence, and it will be difficult to appeal against that, for the very same reason.

Get the evidence collected (which it sounds like you are doing) and you will have a much better chance at having a successful outcome next time.

It's worth remembering as well that although the guidance states that two severe scores may indicate a primary health need that it's still professional judgement about if those severe scores do amount to a complex/intense/unpredictable healthcare need.

This is particularly the case if one of the severe scores is in the 'cognition' domain as someone can have severely impaired cognition but not actually be particularly complex to care for (e.g advanced dementia but otherwise calm and non resistive to care). On the other hand a severe in cognition could also indicate someone who is frequently placing themselves at risk because of cognitive impairment (climbing over bed rails, touching hot radiators, eating food, trying to walk unaided). They both score the same in that domain, but one is much more likely to have eligible needs for CHC based on that score than the other.

Unpredictability, intensity and complexity need to be the words weaved into everything the care provider writes from now on.

My father-in-law got CHC funding. I'm pretty sure it is only because my husband, who's a barrister, went to the meeting. The social worker my mother-in-law beforehand 'he wouldn't get it'- not that she should be prejudging the issue.

My father, on the other hand, has been appealing the decision made for his aunt for years. The maladministration has been literally astounding. He won't give up though.

In my experience, CCGs are incorporating all manner of their own subjective tests as to eligibility rather than following the letter of the law. Unfortunately, many of the people involved in the decision-making process have a very poor understanding of the law. The system is a shambles and they rely on people giving up and walking away rather than fighting on.

There is absolutely no incentive for a HCP to influence the outcome of funding, we don't have targets or get a pay rise for turning people down, honestly, there seems to be a lot of false information and suspicion around CHC funding.
The role of the nurse assessor is to collate and analyse information and evidence. OP you have clearly stated that the care setting is failing to document incidents, this is why you have been turned down for CHC funding.
For the pp who suggested secretly recording conversations, this is the worst advice I've ever read, and is a sure fire way to end any good working relationship, you sound like an absolute idiot and people will just refuse to work with you.

Countrylife when you have had social workers or hcp lie to your face and when you call them out on it, they lie some more, then i feel that recording the conversations, whether covertly or openly is a reasonable response. When people in these positions of power stop lying, then perhaps people won't feel the need to record them.

My dad doesn't qualify and his dementia is getting worse.
The whole system is awful : a war veteran paying out of his own savings because he had the audacity to live to 97 ( 98 in Jan)
I feel for you all going through this.
Luckily he had some savings but that is drying up fast! Makes me sad and angry.

Nurse here. CHC funding is notoriously difficult to get, and I hate the staff that work in the CHC department as often they're pretty heartless. You basically have to have very severe cognitive and physical health needs above what would deemed to be 'normal' for a nursing home to manage (e.g, being incontinent or having a catheter wouldn't in itself count as high needs for continence care, or similarly having to be fed wouldn't count as high needs for nutritional scoring, as these would be considered relatively routine nursing care). In terms of behaviour you would need to have frequent, unpredictable and very challenging behaviour to score as high need. At best realistically most people may win a fight to get the nursing element (can't remember how much this is exactly, I think it's about £100ish a week).

I guess what I'm saying is be realistic about what your chances are of getting CHC funding. I've seen a lot of relatives expend a lot of energy fighting for CHC funding and a lot of the time I can tell from the outset that they are never going to be successful. I 100% agree the system is crap, but unfortunately the bar has to be set really high as the NHS just doesn't have the resources to fund long-term care.

You may find it helpful OP to look at the CHC checklist which gives examples of what counts as high care needs, and may help you work out whether your Father is likely to meet the eligibility criteria.

www.gov.uk/government/publications/nhs-continuing-healthcare-checklist

I have recently gone through the CHC assessment for my DM who has dementia. Unsuccessful but am considering appealing. I was present at the assessment and fully involved. I would say it was a fair outcome based on the assessment, but borderline.

My experience is that it is very reliant on evidence supplied by the care home. However, it's as well to remember the home has a vested interest in trying to show they are managing the resident's needs, and sometimes I think they gloss over things which could be important as evidence.

I challenged a few areas where I thought the home's records were deficient, eg very minor accidents (which were not significant but might evidence a fall risk), or where I disagreed with their assessment, such as my DM's alleged co-operation with personal care, when I knew she could be quite resistant.

It's really important, therefore, to keep your own records of events, illnesses, accidents, anything that you think may be relevant for the assessment.

Also, dementia on its own is a difficult case to make. It's easier where there is an additional medical need such as (in my DF's case) Parkinson's, where our application was successful.

I'll be watching with interest.

I worked with solicitors who dealt with CHC and also in care in a funding capacity.

I learned only a tiny percentage get CHC when they first apply and a lot more get it when they are end of life...... this was true in my dads case. He got it 7 days before he died. He couldn't stand or walk or feed himself for months before this but he was self funding.

I was also told that if you appeal it's very, very rarely successful as they just review the old information the best thing to do is apply again gathering as much new information as you can evidence.

I think that's right, @dancemusicsexromance, once they are on an end of life path and not expected to last more than three months, they qualify for Fast Track funding. That was my understanding.

My DF's first application was unsuccessful but rather than appeal we asked for another assessment a few months later, which was successful.

My grandmother was 5 years into dementia when she was assessed for continuing care. Was in hospital at the time. Unconscious almost completely. Hadn’t eaten for more than a week and had refused fluids for a couple of days.

She was refused CC. We appealed and won. Only she’d actually died the day before. It really made a shitty situation worse, with the tussle between social services and NHS CC each trying not to have responsibility for her, hospital talking about discharging her to a home, while meanwhile she was dying.

Sadly that happens a lot Jan, my local authority have started tracking people we feel should have got CHC / fast tracked CHC but have been turned down by the NHS.

The number of people refused a fast track who have then died within a few weeks of the decision is far too high.

the tussle between social services and NHS CC each trying not to have responsibility for her

it's awful that you have been made to feel that's the case, I can certainly see how it could appear that way, but certainly when I'm sat in CHC meetings debating a point with a nurse assessor it's not because I don't want to take responsibility for someone it's because I have a statutory and moral duty to ensure that they aren't paying for services that the NHS should be paying for.

Equally the nurse assessors are under a lot of pressure to only accept needs where there is the written evidence. They get into trouble if they let stuff through that hasn't been evidenced.

I'm so grateful for this thread as I'm finding the process very confusing!

We've been given advice which seems to contradict itself - we were told initially that CHC would only be granted if there was a primary medical need, so social needs ("such as confusion presented by dementia") would not be considered as requiring funding. Therefore, a severe score in the behavioural category may well be ignored as a 'social' need, but a severe score in the medication category would be a 'medical' need and would be taken into account.

However, we've also been told (by the same assessor) that if the patient does not have a severe score in the behaviour category, is reasonably compliant with care and does require specialist care because of their medical needs, then unless that patient requires "nursing care above and beyond what would normally be expected of the nursing home", then their overall needs would be deemed as low and therefore thy would not be funded either. As a result, if everything apart from behaviour is scored as severe, then it would still be classed as a low need because the patient doesn't or can't resist care.

This seems extremely contradictory to me - and when I said so, everything was repeated V-E-R-R-Y S-L-O-W-L-Y which didn't help either my understanding or my mood! It seems to say that if behaviour is problematic, then we'll treat it as a social issue so they won't be funded, but if it isn't problematic, then the patient won't require additional care beyond standard nursing treatment so they won't be funded either.

I'm hugely grateful to hatgirl for clarifying the process - in our case I think there has been a focus on unpredictability (which is less intense now that Dad's mobility has declined) but that intensity has been passed over in a number of categories.

It does worry me that the process is so opaque when it doesn't need to be - I'm sure assessors get a lot of abuse from families that they shouldn't, and I know that the process has cost a lot of families (at least this one) a lot of sleepless nights that it shouldn't.