I would put EVERYTHING in the Domains. How does your Mum act when she can't leave. Is she aggressive/emotional? How often does it happen? How often does the staff have to intervene?
CHC (Continuing Healthcare) support thread
- Thread starter stanleypj
- Start date
Thanks for your advice. Mum used to thump carers at day care and kick doors to try to get out. They couldn't manage her.
After two years locked in the CH I suppose she has accepted that she can't get out. She often tries the door handles and keypads, to no avail. Is this classed as a managed need?
After two years locked in the CH I suppose she has accepted that she can't get out. She often tries the door handles and keypads, to no avail. Is this classed as a managed need?
This is only my opinion
When your Mum tries the door handles and keypad is she distressed? Does she bang/kick the door still. How long does she try to 'get out'? Frequency? Aggressive behaviour doesn't have to be directed at a person-property also counts.
Does she hurt herself (or in danger of hurting herself) Is she easily distracted by her carers? What happens if the carers do not distract immediately? Does she stop after a few attempts? Even if she is not violent/aggressive she could still get a score for this behaviour (it may be a low score though) in the emotional needs domain as it could be perceived that your Mum is disturbed by being locked in and unable to go where she wants.
Try to use each aspect in as many domains as possible.
XXXX
When your Mum tries the door handles and keypad is she distressed? Does she bang/kick the door still. How long does she try to 'get out'? Frequency? Aggressive behaviour doesn't have to be directed at a person-property also counts. Does she hurt herself (or in danger of hurting herself) Is she easily distracted by her carers? What happens if the carers do not distract immediately? Does she stop after a few attempts? Even if she is not violent/aggressive she could still get a score for this behaviour (it may be a low score though) in the emotional needs domain as it could be perceived that your Mum is disturbed by being locked in and unable to go where she wants.
Try to use each aspect in as many domains as possible.
XXXX
Thanks Lyn, I suppose if I'm honest she doesn't kick off as much as she used to.
Mum needs another severe to qualify, because although she should get one for Cognition she can only get High for Communication. The rest would be Moderate or less.
The trouble with the behaviour domain is that it seems to be based on how well it can be managed. Not really in line with a managed need is still a need.
Will have to see what happens tomorrow.x
Mum needs another severe to qualify, because although she should get one for Cognition she can only get High for Communication. The rest would be Moderate or less.
The trouble with the behaviour domain is that it seems to be based on how well it can be managed. Not really in line with a managed need is still a need.
Will have to see what happens tomorrow.x
I do agree with you Jakiflora. It's not right or fair. That's why we have to fight by using the appeal system-if we have any energy left.
Have you looked at the CH records? If the notes are good you will be able to see how often your Mum kicks off.
Good luck and keep posting
XX
Have you looked at the CH records? If the notes are good you will be able to see how often your Mum kicks off.
Good luck and keep posting
XX
Well today was supposed to be the day. CCG phoned this morning to say Nurse Assessor phoned in sick and they couldn't find a replacement at such short notice. I pointed out that I had already waited 4 months and this was not within guidelines of 28 days. She said she'd look into this.
Lyn, regarding care home records I'm having a real problem here. The last two CQC inspections found the records inadequate. The long standing manager subsequently left and the new one only lasted six weeks. In fact, the last inspection also found a lot of other inadequacies which are making me think of moving Mum. Trouble is she is much less anxious now than at home and I don't want to cause distress.
Although the DST meeting is cancelled I've asked if I can still meet with the acting assistant manager who was supposed to be at the meeting to discuss my concerns.
Thanks for listening. xx
Lyn, regarding care home records I'm having a real problem here. The last two CQC inspections found the records inadequate. The long standing manager subsequently left and the new one only lasted six weeks. In fact, the last inspection also found a lot of other inadequacies which are making me think of moving Mum. Trouble is she is much less anxious now than at home and I don't want to cause distress.
Although the DST meeting is cancelled I've asked if I can still meet with the acting assistant manager who was supposed to be at the meeting to discuss my concerns.
Thanks for listening. xx
Oh no! It seems strange to me that so many meetings are cancelled. The cynical person that I am makes me think some of this is due to delaying tactics
I went to appeal when Pete was refused CHC. I had good cause as he was in a MHU and the Nurse doing the checklist completed the DST. The narrative had two paragraphs about Pete-and two about another gentleman named Pete. Confused? So was I -and furious.
The next meeting was called and the CHC bod turned up-but not Pete's SW or CPN. The CHC person refused to cancel the meeting and it went ahead with the Assistant Manager of the CH. This is where I had an advantage over you. The records were exemplary. Every little detail was noted. I'm quite sure that Pete was awarded CHC on the strength of the observations.
Is it possible that you can look at Mum's records every time you visit? I had access to Pete's records whenever I wanted them. That way if you are aware of any incidents you can check the observations that have been noted.
Good luck with your meeting with the Assistant Manager. Be polite but firm about the records. Perhaps also email the CCG and officially complain about the delay.You really don't want the risk of being put to the back of a long queue again.
I learned that going to the top of an organisation was the way to go. That's not how it should be -but it appears to be that's how it is. Terrible.
Good luck
Lyn T XX
I went to appeal when Pete was refused CHC. I had good cause as he was in a MHU and the Nurse doing the checklist completed the DST. The narrative had two paragraphs about Pete-and two about another gentleman named Pete. Confused? So was I -and furious.
The next meeting was called and the CHC bod turned up-but not Pete's SW or CPN. The CHC person refused to cancel the meeting and it went ahead with the Assistant Manager of the CH. This is where I had an advantage over you. The records were exemplary. Every little detail was noted. I'm quite sure that Pete was awarded CHC on the strength of the observations.
Is it possible that you can look at Mum's records every time you visit? I had access to Pete's records whenever I wanted them. That way if you are aware of any incidents you can check the observations that have been noted.
Good luck with your meeting with the Assistant Manager. Be polite but firm about the records. Perhaps also email the CCG and officially complain about the delay.You really don't want the risk of being put to the back of a long queue again.
I learned that going to the top of an organisation was the way to go. That's not how it should be -but it appears to be that's how it is. Terrible.
Good luck
Lyn T XX
Little chance of dementia ever receiving CHC?
Just friustrated and need to vent and alert people to the impossibility of ever getting funding for dementia.
Having attended yet another meeting for CHC funding at which they have decided mother's needs are not unpredictable or complex enough for passing on to the panel. I doubt she could now ever qualify, unless she actually reaches the 'active dying' phase-she is currently at the 'would not be unexpected for her to die' phase & has her just-in-case meds but her needs although 'unpredictable' are 'predictable' at the stage of dementia which she has now reached and do not qualify as a 'Primary health need'. Despite the increasing frequency of her seizures, they are adequately dealt with by specific intervention-rectal diazepam, which because the staff are so familiar with her are able to deal with. In other words her needs are 'managed' and I very much got the feeling if I'd brought up that phrase it would be swept under the carpet. Even my mentioning 'entering the terminal phase of her life' which they agreed with, was not taken up.
They agree that her dementia is so far advanced that she is unlikely to demonstrate any behaviour problems as she is now 'compliant' with all care, so no needs- the only area with that score.
Cognition of course scored Severe and Communication High, but the bar is set so high in all the other criteria that she only manages Moderates, and no lows. Yet all these still do not demonstrate a Primary Health Need!
At the end they asked me to sign the DST and I presume that means I've accepted the decision and have no recourse to complain? I'd lost the will to fight by then.
I know there's nothing I can do about it but it does make me feel my mother (and all our relatives with dementia) are being penalised for having a 'mental illness' which is not recognised as such.
I'd assumed as we'd been here 3 times before and at the last assessment 5 weeks ago that as she'd scored a positive again that they might consider her as elegible. So I turn up and it becomes obvious that the general consensus is that mother's condition has plateaued and therefore we're not going to be referred. After an hour that became the 'conclusion'. What a total waste of time for people and NHS money. Why not have just said at the last meeting she would just be eligible for NCC?
Just friustrated and need to vent and alert people to the impossibility of ever getting funding for dementia.
Having attended yet another meeting for CHC funding at which they have decided mother's needs are not unpredictable or complex enough for passing on to the panel. I doubt she could now ever qualify, unless she actually reaches the 'active dying' phase-she is currently at the 'would not be unexpected for her to die' phase & has her just-in-case meds but her needs although 'unpredictable' are 'predictable' at the stage of dementia which she has now reached and do not qualify as a 'Primary health need'. Despite the increasing frequency of her seizures, they are adequately dealt with by specific intervention-rectal diazepam, which because the staff are so familiar with her are able to deal with. In other words her needs are 'managed' and I very much got the feeling if I'd brought up that phrase it would be swept under the carpet. Even my mentioning 'entering the terminal phase of her life' which they agreed with, was not taken up.
They agree that her dementia is so far advanced that she is unlikely to demonstrate any behaviour problems as she is now 'compliant' with all care, so no needs- the only area with that score.
Cognition of course scored Severe and Communication High, but the bar is set so high in all the other criteria that she only manages Moderates, and no lows. Yet all these still do not demonstrate a Primary Health Need!
At the end they asked me to sign the DST and I presume that means I've accepted the decision and have no recourse to complain? I'd lost the will to fight by then.
I know there's nothing I can do about it but it does make me feel my mother (and all our relatives with dementia) are being penalised for having a 'mental illness' which is not recognised as such.
I'd assumed as we'd been here 3 times before and at the last assessment 5 weeks ago that as she'd scored a positive again that they might consider her as elegible. So I turn up and it becomes obvious that the general consensus is that mother's condition has plateaued and therefore we're not going to be referred. After an hour that became the 'conclusion'. What a total waste of time for people and NHS money. Why not have just said at the last meeting she would just be eligible for NCC?
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Just back from the CH. Spoken to the acting Assistant Manager, only a youngster who looked completely out of her depth. She had no idea what Continuing healthcare was and had never been to a DST meeting. Tried to get her on board with getting staff to record all Mum's reactions to care interventions and different mood swings. She just smiled sweetly. No luck there then.
Lemonjuice.
I am probably going to end up going down the same road as you with my Mum. It is so unfair that these poorly, vulnerable old people are just ignored by the nhs.
My father received excellent free care during his battle with cancer, until his death 7 years ago. He'd be turning in his grave if he saw what was happening to Mum and the home he worked so hard to provide for her (being signed over to Council on deferred payment agreement)
I am probably going to end up going down the same road as you with my Mum. It is so unfair that these poorly, vulnerable old people are just ignored by the nhs.
My father received excellent free care during his battle with cancer, until his death 7 years ago. He'd be turning in his grave if he saw what was happening to Mum and the home he worked so hard to provide for her (being signed over to Council on deferred payment agreement)
It's only thanks to this thread that I discovered that the dst assessment is supposed to take place within 28 days of the checklist assessment. The checklist for our dad was completed in mid August. Even that was only done after calling the CCG after they first received details of our application for funding in late June. I'm going to have to have a really firm talk to them tomorrow. At this rate, an assessment this side of Christmas seems unlikely.
Fast track CHC funding
I am interested to hear from others whose loved ones have gone though the fast track process to be awarded CHC funding. Namely, did it all go through OK - was anyone declined
How quick was the process.
Once granted, at the three month review stage, what was the process and was the funding continued?
Appreciate all comments, many thanks Toddleo
I am interested to hear from others whose loved ones have gone though the fast track process to be awarded CHC funding. Namely, did it all go through OK - was anyone declined
How quick was the process.
Once granted, at the three month review stage, what was the process and was the funding continued?
Appreciate all comments, many thanks Toddleo
They actually called me and arranged a date for the assessment, two weeks into December.
MDT Meeting next week
Hi. My Mum's MDT meeting has now been rearranged for next week. This will be six months from when the original check list was submitted by her GP. Not good enough!
I was wondering whether to get in touch with her GP to ask for a letter of support for her claim. Would this do any good? Both the CCG rep (nurse) and Social Worker have no prior knowledge of Mum and have both been appointed purely for the MDT meeting.
Any advice would be most appreciated.
Hi. My Mum's MDT meeting has now been rearranged for next week. This will be six months from when the original check list was submitted by her GP. Not good enough!
I was wondering whether to get in touch with her GP to ask for a letter of support for her claim. Would this do any good? Both the CCG rep (nurse) and Social Worker have no prior knowledge of Mum and have both been appointed purely for the MDT meeting.
Any advice would be most appreciated.
Yes definitely ask for input from the GP and any other health professionals (does she go to a memory clinic?) and if at all possible from carers/carer agency/day centre. Letters and statements from my dad's GP and neurologist proved instrumental in getting his funding.
Unable to speak to Mums GP as receptionist told me that Doctors only take calls by appointment.. Next appointment is 31st January? ????
Stopped going to memory clinic 3 years ago as Mum no longer has memory or cognition. She can no longer speak.
Had to stop taking her to daycare due to behavioral problems. Home carers could not cope. She had been picked up by police and paramedics a few times after going walkabout. Had to keep her locked in at home for her own safety. No help from Social services othr than offering four 15 min visits per day. This caused her even more distress. We had no alternative but to place her in EMI care, where she has been for over two years.
Stopped going to memory clinic 3 years ago as Mum no longer has memory or cognition. She can no longer speak.
Had to stop taking her to daycare due to behavioral problems. Home carers could not cope. She had been picked up by police and paramedics a few times after going walkabout. Had to keep her locked in at home for her own safety. No help from Social services othr than offering four 15 min visits per day. This caused her even more distress. We had no alternative but to place her in EMI care, where she has been for over two years.
Could you get a report from the home carers? What about the police or paramedics? Are (comprehensive) notes kept in the EMI home? Tell them to write a report if not. Ask the day care to write a letter detailing her behavioural problems and why it was no longer suitable for her to continue attendance.
I managed to get a statement from a retirement club that my dad hadn't attended for over 18 months.
Good luck.
