Has anyone experienced the 'application for NHS continuing care' process?.......

[MamaMimi]

....for themselves, a relative or friend?

Just wondering what other people's advice might be if they have been through this shambolic process, and have maybe been successful.

Or, anyone dealing with the process at the mo', as myself and dp currently are for his mum.

We are at the point of appealing against the decision that dp's mum is ineligible for continuing care, and will be requesting a review of the panel's decision, but in the meantime Social workers are putting pressure on dp to go along with his mum's discharge from hospital into a nursing home and we feel this should not happen until any appeals have been exhausted and the decision is then a final one.

Just wondered if there is anyone out there who may have gone through this who could offer some advice???

I would also welcome comments from NHS and social services workers with knowledge of this topic.

I haven't been through this process personally but have worked in the NHS and I agree with you to resist discharge until your appeals have been exhausted. If nothing else it might speed up the process. From the little I do know about coninuing care the eligibility criteria is usually very tight so its very difficult to get it agreed.

There are plenty of NHS/social workers who are regular posters so I would bump again tomorrow if not many responses tonight.

I'm a hospital social worker and as it happens I've been helping complete a Continuing Health Care application today! Were you involved in the original assessment and do you know on what grounds they've turned it down? Not everyone realises that they have a right to be present at the assessment meeting (and, presumably, any review, although I'm not so sure about that) and this can be a great advantage.

In the case I was involved in today the family had requested the assessment and wanted to be present. The nurse was extremely dismissive when discussing it with me beforehand, but because they were there and able to put their case in person, the outcome was much more favourable to their relative than it would have been otherwise.

If I were the social worker in question I would be on your side and support your desire to wait since part of the social work role is advocacy, and I would consider that you've been through enough with your mil's illness without having to be pressurised into making a quick decision about care without all the facts. It's also a vital piece of information as an award of the money might alter your choice of nursing home anyway.

Is there an independent advocacy service that could help eg one run by Age Concern or another local organisation such as a Carers' Centre? Their workers are very knowledgeable, and if the social worker's not being supportive it sounds as though you really need someone else who knows the system to be on your side.

Hope that makes sense and is a little bit useful; sorry, it's late and I'm a bit incoherent after a busy day at work and just off to bed. All the best, and don't give up the fight until all avenues have been explored - but also remember that if it is finally turned down, you can always ask for a reassessment at a later stage.

thankyou pinkteddy and overthehill for your responses - both very encouraging.

We were involved in the first assessment meeting (ie, the multi-disciplinary team assessment meeting) and I agree that without our input dp's mum would probably not have scored as highly, in some of the domains of the DST, as she ended up doing after we put across our views of her needs. In the end it was decided her case should go forward to the relevant panel for consideration.

All sorts of things have been done wrong though and we have had to question these things and have been told by people doing this as a job that it was all done correctly. But that is a joke because you only have to read the National framework to see that these things are clearly wrong.

Examples are:

• a screening tool that is specific to the hospital was used to decide if dp's mum was eligible for CC, and from that it was decided she was not eligilble to be put forward for further consideration. This, BTW, was carried out by the social worker in question, with a nurse I think, and she wrote to us to inform us of the decision and obviously had NO intention of using the MANDATORY initial checklist provided as part of the Nastional Framework.

Only when dp wrote to the directors of the PCT and Social Services was the proper procedure started. Yet we are still being told that it was right to use the hospital's own screening tool - this is surely WRONG, and maybe even unlawful(?)

• also, when dp's mum passed the DST and it was decided her case should be put forward to the relevant panel for further consideration, the continuing care co-ordinator told us, that we HAD to provide financial info. to the panel, eg.costs of care homes, so the panel knew what amount of funding they would be asked to give if she passed that stage.

This is fundamentally wrong as such info would be quite inappropriate for a panel to consider when they are there to make a decision SOLELY on health needs. When we refused to give this info and said why, the CC co-ordinator got quite shirty with us and said she would have to check with her team leader as to where we stand. Needless to say she got back to us to apologise and said that we were right and she was wrong.

Why did we have to put this person right when it is her job to know these things?

The whole system is flawed and it seems that many people working in this field are still working to old guidelines, and have not updated themselves since the new National Framework came into effect. It is so annoying and frustrating when we are being told something is right because of the ignorance of the professionals.

We still believe at this stage that dp's mum is the responsibilty of the NHS, until a final decision is reached, and therefore she should not be taken on and means tested by the Social services. In fact, s.21 of the National Assisstance Act 1948 says that a person cannot be means tested by the local authority for accommodation where accommodation is already available. (She still has her own home but SS are telling us she can no longer live there on her own because of the risks to her HEALTH, and that she needs to be in a NURSING home). Surely this indicates that her needs are HEALTH needs, and therefore the responsibility of the NHS!

OK, rant over, would still welcome any more comments MNers may have.

Bumping to see if anyone is around at this time on a Fri that may have any experience or knowledge about this area of the NHS.

The NHS don't publicise the right to continuing care, presumably because they don't want many people knowing that it is potentially available to them. Of course the more people that apply, the more money the NHS would have to use to fund their care.

There are probably many MNers out there who have relatives/family members who have been forced to sell their homes to pay care home costs, and are unaware that these costs could be paid for by the NHS if the individual concerned was assessed according to the correct procedures. And also that any money paid so far could be reclaimed from the NHS.

hi, I am a community OT and do CHC assessments in the community.

As I believe it the legislation is vague and open to interpretation by each authority. Is is all fairly new too so test cases coming up all the time.

I had a shit day at work and am supping a lovely vodka and soda so will look back tomorrow when my brain may be further in gear.

BTW - ss will get fined for 'bed blocking' when someone is deemed 'medically fit for discharge' hence the keenness to get people out of hospital.

I am an SW - will post over the weekend!

Thanks for all responses so far, will look forward to reading more from you.

Pindywop, sorry you've had a bad day (us too with all this business). Yes, I'm aware that ss can carry the can over a delayed discharge, but as I mentioned, we still believe that until we have a FINAL decision mil is still the responsibility of the NHS, and therefore should not be passed over to ss.

It's all very well pushing to get someone out of hospital, but if where you are forcing them to move to is somewhere they are being asked to pay for and they are currently arguing that point because they feel they shouldn't have to pay there's got to be something wrong.

MM, it's me again - and I should be in bed - again! I was going to mention about concerns re delayed discharge, but decided it was not relevant as this should not be an issue for Social services if there's an outstanding CHC assessment or if the person is a self-funder - and even if it were an issue, any social worker worth their salt should be more concerned about their client than the precious bed-days and any possible fines.

Honestly, I thought our Trust was pretty bad and our discharge nurses have horns(!), but even they use the correct assessment tool, for heavens sake - the whole thing sounds outrageous!!

It also sounds as if the social worker is in cahoots with the nurses, which simply isn't on: we see our role as an advocate for the patient and their family and spend a large proportion of our time fighting for patients' rights.

It's totally wrong, as you correctly say, to ask about costs of care homes before the decision has been made, and certainly in our authority it's up to the Trust/Social Services to negotiate the price of the care home direct with the provider depending on the patient's individual needs.

I also agree that there's still a lot of ignorance out there about the new rules, which only came into force last October, but we find that in our area it's actually worse in the community and that the hospital staff are quite clued up.

I suggested an independent advocate, but another idea - and you could do both - would be to approach PALS (Patient Advice and Liaison Service), which every hospital has to have by law. You would certainly have a very justifiable complaint due to the amazing incompetence of the staff, and you could also put in a complaint to social services if you thought this would help.

A final point: you've not gone into detail about what's wrong with her, but just because you've been told that she's too unwell to continue living at home doesn't automatically make her qualify for CHC; the assessors do have to adhere to strict criteria - although, as you say, they are open to interpretation - but they do have to be evidenced. It's also true that people can go home and have a care package funded by CHC. One final point: social services can't force people to sell their homes even if they have to pay for their own care; a charge can be put on the property instead so that a debt is accrued, but obviously the fees do have to be paid.

Again, if you lose the fight and do have to pay, and want financial advice re care home funding & how to make the money go as far as possible, it would be sensible to seek out someone independent, eg via www.helptheaged.org.uk/carefees.

Hope that helps; it's much too late and I'm off to bed now. Zzzzzz...

hi there,

Firstly, sorry to hear that you're all going through this.

I find it odd that your MIL's SW is not actively pursuing NHS CC funding, as whatever the NHS pay is money SS save.

You need to clarify whether MIL is going into a residential care home, or a nursing home. I find that hospitals use the terms interchangeably, which is not correct. If she is being admitted into a nursing home because she has long-term nursing needs, than it would seem likely that she would be eligible for NHS CC funding.

The threshold for his is very though. i have know a number of very ill and disabled people not to qualify due to the nature of the scoring system.

BTW, if your MIL is not mentally incapacitated then no-one can tell her that she can't go home, even if they would consider this to be unsafe.

If you are all happy that she will go into a particular nursing home regardless of the panel outcome, then it may make sense for her to leave hospital now, and allow the appeals process to go ahead whilst she is in the home. If not, you need to state clearly that funding issues will affect her decisions on care post-discharge.

Please note that if your MIL moves into a home she can reapply for NHS CC if her condition changes, so you may still be able to protect some of her assets at a later date.

The idea that people at panel are making financially motivated decisions is wrong and illegal. Budget holders should not influence clinical decisions in this way.

I would recommend you cause a huge fuss, and possibly get legal advice. In my experience, sadly, it's the squeaky wheel that gets the oil .

Thanks so much oth and PW for the further advice.

oth it is a revelation to me that a hospital sw's role should be as advocate for the patient as this has not been our experience at all, & she is a hospital sw too. We feel we are fighting against her as well as the NHS for mil's rights.

We had fully expected that dp's mum would be denied CC at this stage as the criteria and therefore the decision makers are not compliant with the case law judgement (Coughlan). But we didn't expect that whilst appealing the SW would be pushing to take the case over and putting pressure on to transfer her to a nursing home, they have already had her assessed for 2 local homes and have said one is offering a place immediately.

Are SS doing this 'cos they know she would be a self-funder and so the LA would not have to fork out for her care costs once she has been means-tested?

Surely she is still the responsibility of the NHS until it is finally decided whether she is or not, iyswim. ie, they can't hand her over to SS 'til that is proven to us, who don't accept the current decision.

The panel decided her needs did not indicate a primary health need as the care she requires is 'support, supervision etc with all aspects of daily living' - I would like them to explain to me how this differs to the care that was required by Pam Coughlan. Perhaps it may have to go to court so they can explain that to a judge who would have no choice but to apply the case law, and therefore their criteria and reasons for their decision would not stand up.

I think it's totally appalling that the SW is behaving like this and I can't understand what's in it for her - or her Department . Our discharge nurses behave quite like this and we spend a lot of our time fighting against them in an attempt to uphold patients' rights. However, it does take a lot out of us and the confrontations (such as the one I had on Thursday with my CHC case) make my blood boil. It sounds as though the SWs in your hospital just don't bother speaking up for the patients and so collude with the NHS.

I completely agree that your mil should be the responsibility of the NHS until the final decision has been made and I can't work out why the SW is putting pressure on you: as the 'delayed' discharge would be a Health delay, the SW is effectively doing their dirty work by pressurising you. If she's self-funding anyway it's up to you to decide where she goes and effectively nothing to do with the SW, so why has s/he had local homes in to assess her??

Re the Coughlan judgment: in my experience, most people do have much greater care needs than she (apparently) had before being accepted for CHC funding, (which of course is totally wrong) but I'm not sure whether this is still relevant anyway as Pamela Coughlin was assessed under the old guidelines.

As far as I can see, although the money side and your mil's rights to have what she's entitled to are extremely important, the fact that you're receiving such shabby treatment and having all control taken away from you just compounds the problem, and if you were treated with any compassion and care, then you might find the whole process somewhat easier to handle.

Myself and dp really appreciate your comments oth, they have been really helpful and we will probably take these concerns up with the SW involved. Thanks

Also wanted to add that when dp called the clinical lead of the CC section of the NHS to inform her that we would be appealing, and to just voice our concerns over the decision she said to him, and I quote,

"you don't care where your Mum goes as long as the NHS pay for it"!!!!

Dp was slightly flabagasted I think but did respond by saying that he wanted to choose where his Mum goes. I told him afterwards that he should have pointed out to her that we had spent time visiting local nursing homes precisely because we DO care where his mum will be living, whoever ends up paying for it.

The point being, though, how can we accept a fair decision from a panel that includes someone with an attitude like that?

And also from a panel that according to the care co-ordinator has been willing until now to accept financial costings, in with the DST and medical info.

oth, just wanted to point out that the new guidelines that have come about since the Coughlan case have been drawn up as a response to the judgement in that case and that they should be Coughlan compliant and be in line with 'the Coughlan test' (which in many areas they are/do not). If Pam Coughlan was assessed using the new National Framework directions, and the points scoring system, it would be highly unlikely that she would be found eligilble for CC, and yet she DID receive it, and her court of appeal case set the benchmark for any further claims.

But of course the NHS make up their own criteria for deciding who is eligible to receive THEIR CC funding so they are not going to make it easy are they. Many people who don't get it should, according to the LAW.

The NHS have also decided that in complaining about the decision you cannot complain about the criteria itself, so they've gotr it all wrapped up really haven't they? or so they think!!

MM, I've attended training sessions by Luke Clements, a lawyer who's and expert on this topic, and he's said repeatedly that Health Trusts are breaking the law by denying patients CHC funding. In fact I just Googled him and found this, which sums up the problem very well, I think: news.bbc.co.uk/1/hi/programmes/panorama/4763886.stm. As for the clinical lead person you mention and the SW, I do often wonder why these sort of people go into a caring profession as caring seems to be the last thing on their mind!

oth - fantastic link, thank you. I feel like printing it out to hand to the SW and to put to a review panel, just in the hope that it might explain to these people why we are so frustrated with what they are doing.

Judging by what he says in that transcript and from our experience the professionals we have come across just aren't used to people questioning them and putting up a fight against what they are saying/doing. They get annoyed because they expect you to just accept everything coming from them as being right.

I have read a response by Luke Clements to the new National Framework and it was from that that I got the info that P.Coughlan would not qualify if assessed under the new guidelines. As well as other patients whose cases have gone to court or the ombudsman and have ended up getting CC through their appeals when originally it was denied to them by their PCTs.

Have you ever been on this site - www.nhscare.info (simply this, no dot com at end or anything) Sorry, not too sure how to link. It contains a wealth of info on this subject and with you being a relevant professional some of it may be of interest to you.

Thanks for the link, MM; looks interesting. FYI, I reassured my client's relative today (who was involved in the CHC meeting last week) that there was no rush to find a placement for her aunt as I didn't see how this could possibly be justified until the CHC decision was known. I also said that I thought the meeting must have been stressful for them - as my Health colleague has a very aggressive style - and as well as acknowledging this, she said that she felt sorry for me due to this women's behaviour. Interesting?

Earlier in the day I'd picked up a call on duty from a chap whose wife was put into a nursing home before a CHC decision had been made, and he's actually already paid £4000 to the nh. However, CHC has now been granted, so I've told the nh that they'll have to pay back the money & claim it from Health instead. How crazy is that??

Poor guy and his wife. These people are just not being made aware of their rights by the NHS. The NHS must think as long as people don't know any different and don't question what they believe MUST be the correct procedures that they will get away with it. It all makes me so mad!!

(BTW, I have found out that the NHS are responsible for paying for care until any appeals ref CC have reached the SHA Independent Review Panel stage.)

You seem to be a excellent SW, with your priorities in the right order, though. Your clients don't know how lucky they are.

DP spoke today to the head of SS dept. in our area and told her of the issues we are concerned about, and told her he would be putting everything in writing to send to her. From what he tells me the conversation was very positive and she took on board his concerns, said she was concerned herself about the things he was telling her, and that when she has received and read his letter she wants to meet with him to discuss things further. At least someone is listening.

Although when dp mentioned to her about the screening tool that the SW used, she said that it had been agreed with the hospital! Everyone seems to believe that it ok to use this tool that may stop you even getting a chance at the Checklist(which is mandatory). It would seem it's the blind leading the blind.

I am getting a phone call tomorrow morning from a volunteer on the Alzheimers CHC network team. It is someone who has won a claim from their father's PCT, and I will just discuss with her our issues and see if there is any help we can get from her experience.

I will keep updating on how things are going if you are interested in knowing any more. You never know, our experience may lead to tips etc that could benefit yourself and your clients. I would certainly be interested in anything further you may have to say on the subject as you can never be over informed!