CHC Wales - opening up a can of worms?

[Georgina63]

Hi Georgina, I had to comment to say how shocked I am by what I have been reading and how different your experience has been from mine.

We (my dad and I) live in the NW of England and I have found the process of applying for CHC funding very open and straightforward. I suppose it might have helped that at the start of the process we had a very good Social worker who set us on the right path and ensured the care home from day one kept meticulous records and completed ABC charts of all incidents etc. She also advised that I kept date order notes too, which I have continued to do on my phone, which have been very useful as evidence.

From day one I was told how long the process should take by the SW, she also gave me a copy of the Decision Support Tool so I would know what to expect when the review took place and I could be ready with evidence. Once the SW did her assessment, she told me once she submitted the paperwork for the referral, the CHC had to complete the review process within 28 days. The CHC review team made the appointment with me and carried out their review less than 2 weeks after the referral.

Present was myself, the care home nurse, my dad (as he followed us into the meeting) and two people from CHC team. They explained the process, then we went through each of the 12 criteria's giving evidence and examples then they gave their thoughts regarding the level of need after each criteria and asked if we agreed. They were even very open to discussion and changing their opinion, but for my dad their thoughts on the level of need were the same as mine and the care home.

The outcome of the review was that they said dad was eligible for funding and it would be referred to panel within 3 days. I received a call the day after the panel review to say the panel had agreed unanimously to funding and I received the decision in writing a week later. I was also advised that there would be a 3 month review then it would be followed by 12 month reviews.

The only stumbling block in the whole process was the amount of the funding, due to dad's care home costs being higher than the level of funding. The CHC team agreed that it wouldn't be beneficial to move dad (I didn't even have to argue this) so it was escalated to the Assistant Director of the CCG who approved the full funding. This did take just over 2 months for the paperwork to all go through and we finally got a refund on the care home costs a month later.

We had the 3 month review today and after going through the first review documentation and checking the evidence they agreed to continue with the funding, which was a big relief.

I really hope you start to get some good advice and support, I just can't believe how some people can have such different experiences with what you would hope to be a set process with specific guidelines. Best of luck. Elle x

Wow @Elle3 that's brilliant! Before Dad moved into his CH, the team assigned to him at the local Memory clinic were superb. He moved across county borders so we are dealing with a new team who seem less switched on, combined with a local health board who have been, shall we say, less than transparent! Your experience is heartwarming and thanks for your good wishes. Gx

 

[clarice2]

Wow @Elle3 that's brilliant! Before Dad moved into his CH, the team assigned to him at the local Memory clinic were superb. He moved across county borders so we are dealing with a new team who seem less switched on, combined with a local health board who have been, shall we say, less than transparent! Your experience is heartwarming and thanks for your good wishes. Gx

We also live in the NW and have had no problem applying for CHC. When my husband was in hospital they told me he had been assessed and would not get it so I accepted this. When he came home for me to care for him the district nurse said we should try again. She arranged everything. They met at my home and went through the forms. This took about 2 hours. Then they told me it would be awarded. The following week a social worker came to work out a care package, including sitting service so I can go out and respite. I am very happy with the help we have been given and I do not understand why other areas do not offer as much.
Clarice2

 

[Careroncoffee]

@Georgina63 and @Theresalwaystomorrow sending you positive vibes for the process. @Elle3 thank you for your story, you’ve given me hope that the reassessment will be more straightforward. @clarice2 brilliant news, I think it’s a post code lottery.

 

[Georgina63]

We also live in the NW and have had no problem applying for CHC. When my husband was in hospital they told me he had been assessed and would not get it so I accepted this. When he came home for me to care for him the district nurse said we should try again. She arranged everything. They met at my home and went through the forms. This took about 2 hours. Then they told me it would be awarded. The following week a social worker came to work out a care package, including sitting service so I can go out and respite. I am very happy with the help we have been given and I do not understand why other areas do not offer as much.
Clarice2

Hi @clarice2, it’s so positive to hear of your experience with CHC and hopefully this will provide hope for others. Gx

 

[Theresalwaystomorrow]

Hi @Georgina63
Thanks , this really seems area specific dosent it
Also have you found that the nh had a big part to play in this decision? If so we will consider moving mum

 

[Georgina63]

Hi @Georgina63
Thanks , this really seems area specific dosent it
Also have you found that the nh had a big part to play in this decision? If so we will consider moving mum

I’m not sure I can properly answer that yet as it’s still early days. Based on my interaction with the local health board I suspect this will not be an easy ride, but I will confirm that or otherwise once the checklist has been done. I do think they will play a significant part in the process though, not least as I feel I’ve already been steered by them towards a nursing home!

 

[VerityH]

Just came upon this thread and our situations just keep on matching (though I realise you posted this some years ago). Dad now in hospital and in my opinion the care home cannot meet his needs, as he is in so much pain with a fractured spine that he cannot get up or down or even turn himself over in bed any more without screaming and needing 2 people to help. I spoke to another care home with a nursing care floor (same home as my mum, which is fabulous) and the manager, when I described dad's condition, said she would agree that he needed nursing care. The rapid response physio at the hospital, however, said she could not recommend that. The care home said as we are self funding it is up to us to choose whatever care we want for our dad, though of course nursing is more expensive. The manager said given my description of his condition she would be prepared to apply for the £157pw nursing care contribution from the government (mum and dad are over the border in England, so this may be different from what you were dealing with in Wales). Dad is at the point now where the discharge team are getting involved (always a stressful time, and we've been through this 4 times in the last 4 years with the 2 parents). When mum was in hospital in August we were told we would get a 'best interests' meeting with all players in the team, but they never did it. We didn't even get the proper social services assessment as soon as they found out we were self funding they dropped us like a stone. All the rapid response and discharge people say we should 'get a social worker' and give us the number. Every time we phone the social workers, they find out we're self funding and, to a man/woman, the only help they ever offer us is to send us a list of care homes in our area. I swear I know all the bloody care homes in our area like the back of my hand after the year we've had!!!!! Flippin eck!

 

[Georgina63]

Just came upon this thread and our situations just keep on matching (though I realise you posted this some years ago). Dad now in hospital and in my opinion the care home cannot meet his needs, as he is in so much pain with a fractured spine that he cannot get up or down or even turn himself over in bed any more without screaming and needing 2 people to help. I spoke to another care home with a nursing care floor (same home as my mum, which is fabulous) and the manager, when I described dad's condition, said she would agree that he needed nursing care. The rapid response physio at the hospital, however, said she could not recommend that. The care home said as we are self funding it is up to us to choose whatever care we want for our dad, though of course nursing is more expensive. The manager said given my description of his condition she would be prepared to apply for the £157pw nursing care contribution from the government (mum and dad are over the border in England, so this may be different from what you were dealing with in Wales). Dad is at the point now where the discharge team are getting involved (always a stressful time, and we've been through this 4 times in the last 4 years with the 2 parents). When mum was in hospital in August we were told we would get a 'best interests' meeting with all players in the team, but they never did it. We didn't even get the proper social services assessment as soon as they found out we were self funding they dropped us like a stone. All the rapid response and discharge people say we should 'get a social worker' and give us the number. Every time we phone the social workers, they find out we're self funding and, to a man/woman, the only help they ever offer us is to send us a list of care homes in our area. I swear I know all the bloody care homes in our area like the back of my hand after the year we've had!!!!! Flippin eck!

Hi @VerityH, this thread is very current and only recently started, so I am in the midst of trying to apply for CHC funding, although getting nowhere fast. Might your Dad be eligible for CHC funding - it does sound like it? Don't be fobbed off with the nursing care suggestion. Your Dad has every right to be assessed for CHC, whether self funding or not, and my understanding is that CHC assessment should precede any assesment for FNC. Definitely worth doing your homework on this.
Things are slightly different in Wales, but the same principles apply.
I posted a couple of links on the big CHC thread posted in this forum to the latest framework documents. Worth a read if you have a chance!! Gx

 

[VerityH]

Hi @VerityH, this thread is very current and only recently started, so I am in the midst of trying to apply for CHC funding, although getting nowhere fast. Might your Dad be eligible for CHC funding - it does sound like it? Don't be fobbed off with the nursing care suggestion. Your Dad has every right to be assessed for CHC, whether self funding or not, and my understanding is that CHC assessment should precede any assesment for FNC. Definitely worth doing your homework on this.
Things are slightly different in Wales, but the same principles apply.
I posted a couple of links on the big CHC thread posted in this forum to the latest framework documents. Worth a read if you have a chance!! Gx

Good heavens - these are all new terms to me! I thought as a self funder that was that until we got down to the £23kish. If I ever get a moment off, I'll try and mug up on the legalities. Wouldn't it be nice if social services helped self funders with info instead of just saying you're on your own kid!

 

[Georgina63]

Update on CHC. It's been a comedy (although tragedy would be a better description) of errors so far getting just getting an initial checklist completed. It transpires that a checklist was completed but sent to the wrong place (NHS England) and so a subsequent one was completed and sent to NHS Wales, though it turns out that this was the wrong assessment, i.e. a nursing assessment was completed and not a CHC checklist. Which now begs the questions, why wasn't the original one just forwarded on?

After multiple calls and emails, it would seem that there is now agreement that the Psychiatric Nurse and the District Nurse will go ahead complete an initial CHC checklist for Dad. The date is yet to be confirmed. In the meantime, I have read every document and watched every video I can on CHC, although there's still plenty on my list! I posted a link to a really informative lecture on CHC and the law - it's on the big CHC thread in this forum if interested.

Updates to follow as and when. I hope any of you out there applying for CHC are making progress.
Gx

 

[VerityH]

Update on CHC. It's been a comedy (although tragedy would be a better description) of errors so far getting just getting an initial checklist completed. It transpires that a checklist was completed but sent to the wrong place (NHS England) and so a subsequent one was completed and sent to NHS Wales, though it turns out that this was the wrong assessment, i.e. a nursing assessment was completed and not a CHC checklist. Which now begs the questions, why wasn't the original one just forwarded on?

After multiple calls and emails, it would seem that there is now agreement that the Psychiatric Nurse and the District Nurse will go ahead complete an initial CHC checklist for Dad. The date is yet to be confirmed. In the meantime, I have read every document and watched every video I can on CHC, although there's still plenty on my list! I posted a link to a really informative lecture on CHC and the law - it's on the big CHC thread in this forum if interested.

Updates to follow as and when. I hope any of you out there applying for CHC are making progress.
Gx

I am very depressed about THE SYSTEM today, and this post is just another reason why I think we are all bashing our heads against brick walls. What a ridiculous state of affairs. We are just trying to look after our loved ones, for god's sake. Why does EVERYTHING have to be such an effing struggle. Exhausted.

 

[Georgina63]

I am very depressed about THE SYSTEM today, and this post is just another reason why I think we are all bashing our heads against brick walls. What a ridiculous state of affairs. We are just trying to look after our loved ones, for god's sake. Why does EVERYTHING have to be such an effing struggle. Exhausted.

I don’t know. I came across a great word which sums it up...Kafkaesque - something that is horribly complicated for no reason!! Gx

 

[Louise7]

I refer to it as Dante's Inferno. A never ending hell that there is no escape from.........

 

[Georgina63]

Some progress is being made towards getting a checklist completed, even if what I have been advised in the meantime slightly defies belief. I spoke with the District Nurse this week and have confirmation of a date for her to visit to Dad's CH. There is an unwillingness to complete a CHC checklist (not what her manager has advised she do), however she will complete a Nursing Assessment. That being the case, I have spoken to the CH manager who's very supportive and the CPN and I've arranged that we will be all be there at the same! We will get the blooming checklist completed by hook or by crook! I have been through each of the categories and made notes (based on guidance I've read, including notes on completing the Decision Support Tool) so that we can complete the form as effectively as possible, hoping to preempt any suggestion that it has not been done properly. Wish me luck and I'll let you know later this week how we have got on. Gx

 

[Georgina63]

Permission to scream!!

Quotes from my most recent emails from District Nurses and the LHB:

If your Dad is deemed eligible for CHC after the process then he will need to move to a Nursing status home as his Care Home is a Residential status home.

As a general guide CHC is funding is not usually provided in residential homes as they are not registered to provide care except for specialist providers.
First step is the nursing assessment and then we can plan a way forward.

Has anyone else come across the need to have a nursing assessment done prior to a CHC checklist and/or repeatedly been told CHC will only be granted if in nursing home?

I feel we're being made to jump through hoops. On the other side of the hoop is a brick wall which I'm currently banging my head against .

 

[Kevinl]

In the first post on here where you started the thread you do say that you were told your dad would probably have to move to a nursing home so a nursing assessment would have to be done.
My wife had her annual review last week for her Funded Nursing Care which she was given when CHC was refused but she has so many issues that getting it renewed wasn't a problem.
If someone qualifies for Heath Care then there needs to be health issues not "social" issues and if someone is OK to live in a residential home with no medical staff present 24/7 then that kind of proves that Health Care isn't an issue so it's a Catch 22 situation, either he does have health needs in which case he should be in a nursing home or he doesn't so is able to live in a residential home as there's no health care in the residential home he's in and you want him to stay there...then there's no need for CHC.
Even when there are health issues and a nursing home is needed then getting CHC is still almost impossible as; immobility, high fall risk, incontinence, inability to feed, wash or dress oneself, no communication ability what so ever are all seen as social issues not medical ones.
The home no longer applies for CHC for the residents even the ones on end of life care, they say it's so difficult to get it isn't worth applying all they will do is support the families application.
People can and do get CHC my friend got it to be cared for at home as he had a terminal brain tumour and would either be taking up an NHS bed or they paid for him to be looked after in his own home, I think they're more willing to give it when there is a terminal element involved is my view. I think the system is just to grind you down until you go away and only the persistent or those with severe medical issues ever get it.
K

 

[Georgina63]

In the first post on here where you started the thread you do say that you were told your dad would probably have to move to a nursing home so a nursing assessment would have to be done.
My wife had her annual review last week for her Funded Nursing Care which she was given when CHC was refused but she has so many issues that getting it renewed wasn't a problem.
If someone qualifies for Heath Care then there needs to be health issues not "social" issues and if someone is OK to live in a residential home with no medical staff present 24/7 then that kind of proves that Health Care isn't an issue so it's a Catch 22 situation, either he does have health needs in which case he should be in a nursing home or he doesn't so is able to live in a residential home as there's no health care in the residential home he's in and you want him to stay there...then there's no need for CHC.
Even when there are health issues and a nursing home is needed then getting CHC is still almost impossible as; immobility, high fall risk, incontinence, inability to feed, wash or dress oneself, no communication ability what so ever are all seen as social issues not medical ones.
The home no longer applies for CHC for the residents even the ones on end of life care, they say it's so difficult to get it isn't worth applying all they will do is support the families application.
People can and do get CHC my friend got it to be cared for at home as he had a terminal brain tumour and would either be taking up an NHS bed or they paid for him to be looked after in his own home, I think they're more willing to give it when there is a terminal element involved is my view. I think the system is just to grind you down until you go away and only the persistent or those with severe medical issues ever get it.
K

Well I am determined not to give up, though I'm sorry that your wife was refused.

I realise this is simplifying the issue, but the bottom line should be, that given a full assessment (the DST by a MDT or however you want to describe it), if a need is determined and CHC granted, then we can have a debate about whether Dad is in the right place. If following the DST he is determined to not qualify, I can then choose to appeal or not. I think we are getting caught up on terms. Primary Health Need is different from (physical) Health Need. My Dad most clearly has health needs, most of which are, and stem from, his mental health. There are examples in the past of where funding has been granted for example to someone (with Alzheimer's) being cared for at home. A lot of this seems to rest on terminology which detracts from what I am trying to do which is:
a) get a checklist completed
b) get a DST completed (if shown to qualify)

In the meantime, after a long phone call, I got agreement that any decisions about where Dad should reside should not form part of this process. Gx

 

[Georgina63]

There's quite a lot happened since my last post. We eventually got the CHC Checklist completed, along with a nursing assessment, carried out by a local District Nurse, at the insistence of the LHB. These together showed enough 'triggers' to arrange a DST. This has now taken place and the profile of the Care Domains in the DST, showed that there may be a Primary Health Need, i.e. one Severe together with needs in a number of other domains. The outcome though was non-eligibility, but my plan is to appeal once I have received the DST report (have been waiting for over 3 weeks now).

The whole process has been ridiculous (see original posts) and complicated further by the fact that the DST was carried out by England, though the funding LHB is in Wales. There were a number of failings, most importantly, certain information regarding Behaviour was not referenced. At the time I put this down to the CH not recording incidents of aggressive behaviour, but afterwards I was able to find these recorded in the CH records. Hindsight is a wonderful thing! Aside from that there wasn't evidence of a meaningful discussion between the members of the MDT...their decision being made after we all left the room for a short break. Although I asked for the reasoning, it was extremely vague, with a strong implication that any significant needs were now being managed (and so no longer a need).

Prior to the meeting, it felt a bit like I was about to sit an exam that I hadn't fully revised for, even though I thought I had done a lot of preparing. Although the meeting started off well enough, I found the approach of the 2 MDT members quite patronising, and felt very rushed towards the end, despite there supposedly being no time constraint on the day. I'm very grateful I took a friend along to take notes, not least as I have a great record of what was said on the day, but also there is someone who understands how bizarre an experience it was!

Anyway, next stage will be to appeal. I'll try and keep you posted and good luck to anyone out there going through similar.

Georgina x