Ive kept old notes from paramedics and home carers but assumed that they would not be admissable as they are over two years old. Care home records just make general observations such as unsettled, tearful and agitated. No mention of thumping carers which I have actually witnessed. Have complained to Carehome manager but to no avail.
CHC (Continuing Healthcare) support thread
- Thread starter stanleypj
- Start date
Hello Jakiflora,
Before the initial checklist meeting, I contacted all of my Father’s medical professionals (GP, Consultant Physician, Occupational Therapist & District Nurse) to ensure that they were all in agreement that Dad was eligible. I then read the initial Checklist document thoroughly along with information on the “Care to be Different” web site, and completed it myself and took my version to the initial meeting – arguing every point in Dad’s favour and relying heavily on stating (& re stating) the fact that a well-managed need is still a need. Dad has a 24 hour live-in carer and additional carers 3 times a day.
Once through the Checklist, I did the same with the DST document, (using information in the NHS National Framework Document, which I now know much better than I ever wanted to)
I also wrote a 5 page document giving a brief history of my Father, and detailing all medical issues, with dates, hospital admissions, equipment required and evidence that I felt relevant to each of the domains in the DST.
Once I knew the names of the Social Worker and Assessing Nurse (they had no knowledge of Dad at all either), I made sure that they both had a copy before they came to do the assessment. I also sent a copy to Dad’s medical professionals that I had contacted earlier. My reasoning being, that if they had all the relevant information in front of them, they’d find it easier to complete any questions from the CHC team, quickly and accurately.
At the Decision Support Tool assessment itself, I remained calm & friendly but discussed each domain thoroughly. A couple got marked down from my marks, but a couple also got marked up.
We too had had a 6 month gap between the CHC checklist and the DST – because they lost the original Checklist (seems to be quite a common problem). I had to argue quite strongly (& in writing) to eventually get it back dated to the original checklist. If there’s only been one checklist – and the claim is successful, I think it should be backdated to 28 days after the checklist was done.
One of the things that has made my life easier, is the fact that I’ve been keeping a daily diary since September 2013 about all of Mum & Dad’s health issues. It was still an awful lot of work…
Good luck.
rgds, Elizabeth
Hi
Still ongoing here, on for 4th DST next and another CHC application, could someone kindly remind me of the ideal scores of severe , high etc required.
The last DST carried out, couple of the scores were lower than first one
so I'm wanting to make my own notes prior to the meeting next week.
Dads a bit complex with his behaviour being unpredictable and they succeeded with FNC recently.
Thanks X k
Still ongoing here, on for 4th DST next and another CHC application, could someone kindly remind me of the ideal scores of severe , high etc required.
The last DST carried out, couple of the scores were lower than first one
so I'm wanting to make my own notes prior to the meeting next week.Dads a bit complex with his behaviour being unpredictable and they succeeded with FNC recently.
Thanks X k
My husband has PCA a rare form of Alzheimer's . He needs 24 hour care due to him beng nearly blind and can do nothing for himself . In addition to this he has challenging/aggressive behaviour and is physically abusive .
I have the CHC checklist appt on the 30th Jan. I am his full time carer with carers coming in 2 days a week whilst I work . I have a letter from his neurologist, physiatrist, and GP saying they support my claim for CHC. However each letter comprises of just 2 lines. Am I right in thinking these letters should be far more in depth with full details of his care needs? If that is the case I am stuffed as he no longer has the neurologist or physiatrist having been discharged back to the GP.
He is 62 so falls under the radar for a lot of things.
He has had a social service assessment and they say his needs are too complex for them and have closed his file!
(My file with them is still open !)
I am at breaking point on many levels as I haven't had a decent night's sleep for at least 18 months. I am up at least 3 times a night with him.
We do have savings in excess of the threshold but if I put him into care now these would be exhausted within a year.
At what point would one employ a solicitor to help me with the claim?
Today is one of those days when i feel I am drowning in the sadness and heartbreak of our dementia journey.
I have the CHC checklist appt on the 30th Jan. I am his full time carer with carers coming in 2 days a week whilst I work . I have a letter from his neurologist, physiatrist, and GP saying they support my claim for CHC. However each letter comprises of just 2 lines. Am I right in thinking these letters should be far more in depth with full details of his care needs? If that is the case I am stuffed as he no longer has the neurologist or physiatrist having been discharged back to the GP.
He is 62 so falls under the radar for a lot of things.
He has had a social service assessment and they say his needs are too complex for them and have closed his file!
(My file with them is still open !)
I am at breaking point on many levels as I haven't had a decent night's sleep for at least 18 months. I am up at least 3 times a night with him.
We do have savings in excess of the threshold but if I put him into care now these would be exhausted within a year.
At what point would one employ a solicitor to help me with the claim?
Today is one of those days when i feel I am drowning in the sadness and heartbreak of our dementia journey.
Elizabeth Ann,
Thank you for your advice, you clearly did your research well.
I have asked for a GPs letter of support to take to the meeting, had to pay for that !
Spent all day today filling in the DST form myself and gathering evidence. Obviously I'm no way as prepared as you were though.
At least I feel I've tried!!
Jakiflora
Thank you for your advice, you clearly did your research well.
I have asked for a GPs letter of support to take to the meeting, had to pay for that !
Spent all day today filling in the DST form myself and gathering evidence. Obviously I'm no way as prepared as you were though.
At least I feel I've tried!!
Jakiflora
Oh dear I'm so sorry for how you're feeling. I also asked about employing a solicitor but was advised not to do that until appeal.
If Social Services say his care needs are beyond their limits of responsibility then the NHS are legally responsible for all care. No argument.
Hi
Still ongoing here, on for 4th DST next and another CHC application, could someone kindly remind me of the ideal scores of severe , high etc required.
The last DST carried out, couple of the scores were lower than first one
Dads a bit complex with his behaviour being unpredictable and they succeeded with FNC recently.
Thanks X k
One priority and two severes should qualify. Note that several high and moderates can also qualify.
What you've done sounds great (I'm not actually doing the incredibly hard, day in day out care for Mum & Dad and am 330 miles away - so it was easier for me to find the time to be pedantic with all the paper work and try and beat the guilt monster!)
With your version of the DST, you'll know what you're aiming for
Don't forget the fact that a "Well managed need is still a need" - I think they were heartily sick of me trotting that one out - but it did get Dad's marks bumped up on a couple of occasions....Fingers crossed for you all. rgds, Elizabeth.
Note that if there was not a consensus of any score and the highest score was recorded:-
....If, after considering all the relevant evidence, it proves difficult to decide or agree on the level, the MDT should choose the higher of the levels under consideration and record the evidence in relation to both the decision and any significant differences of opinion....
P22
https://www.gov.uk/government/uploa...ile/528272/Decision_Support_Tool_Amended.docx
The panel may not accept the score.
....If, after considering all the relevant evidence, it proves difficult to decide or agree on the level, the MDT should choose the higher of the levels under consideration and record the evidence in relation to both the decision and any significant differences of opinion....
P22
https://www.gov.uk/government/uploa...ile/528272/Decision_Support_Tool_Amended.docx
The panel may not accept the score.
Anyone know how wandering scores in behaviour section. Mum frequently wandered away from home. Could be found miles away. Care assessment said her personal safety was critical. After a best interest meeting with Psychiatrist she was deemed to be needing 24 hour EMI care under a deprivation of liberty order.
This was two years ago. As she is unable to get out would this class as a managed need?
This was two years ago. As she is unable to get out would this class as a managed need?
What you've done sounds great (I'm not actually doing the incredibly hard, day in day out care for Mum & Dad and am 330 miles away - so it was easier for me to find the time to be pedantic with all the paper work and try and beat the guilt monster!)
With your version of the DST, you'll know what you're aiming for
Fingers crossed for you all. rgds, Elizabeth.
Just got back from meeting. Had to be deferred because of inaccuracies in care home notes regarding behaviour. No surprise there !!! Social worker was very good and said a decision couldn't be made until incident reports could be produced. Care home manager got very defensive (probably because the reports haven't been made) and left meeting. We then realised she had actually gone home!!! Very professional.
Only scored 1 severe (cognition) 1 high ( communication ) 3 moderates (continence, skin and medication). Others low or no need.
Unless Mum gets a severe for behaviour I dont think she'll qualify. The problem is that the care notes which were produced today covered this month, when there have been no incidents of challenging behaviour . However I pointed out that the checklist was completed in July and the notes I had prepared were based on September's care notes, which were provided for the previous MDT meeting which was cancelled . There were incidents of violent behaviour then.
Social worker wants to submit two forms to panel. One based on then and one based on now. Ccg nurse doesn't agree. We have arranged another meeting in February and the Carehome have been told they must provide incident reports by then.
Life can be so difficult at times.
Hi I was just wondering if someone could give us some advice on what to expect and whether we will have a fight on outlet hands. My mother in law was diagnosed with dementia this time last year and placed in a care home with 117 funding. Since then she has declined rapidly to the point where we have now been told she has end stage dementia and has weeks to months left to live at just 59 nearly 60 years old.
She is currently in hospital after falling and breaking her hip which has been repaired with a half hip replacement and she has a broken arm/shoulder. They are not doing any physio to get her back on her feet even though prior to this fall her main behaviour was walking and pacing as she can not follow instruction (we feel this is a cop out).
They are pushing us for discharge from the hospital but we haven't been given any idea of what she needs yet as the assesment is only being done today though informally we have been told she needs a specialist unit and as we have been taking a look at nursing homes the majority have guessed that she wouldnt meet their criteria.
A trigger form for chc was done yesterday and she scored 2 As and 6 B's but we feel some of the B's need upgrading to As.
The worry is that the specialist units we have seen cost at least double what the 117 funding is.
She is currently in hospital after falling and breaking her hip which has been repaired with a half hip replacement and she has a broken arm/shoulder. They are not doing any physio to get her back on her feet even though prior to this fall her main behaviour was walking and pacing as she can not follow instruction (we feel this is a cop out).
They are pushing us for discharge from the hospital but we haven't been given any idea of what she needs yet as the assesment is only being done today though informally we have been told she needs a specialist unit and as we have been taking a look at nursing homes the majority have guessed that she wouldnt meet their criteria.
A trigger form for chc was done yesterday and she scored 2 As and 6 B's but we feel some of the B's need upgrading to As.
The worry is that the specialist units we have seen cost at least double what the 117 funding is.
I have little experience and my own experience is that Mum will never qualify now as she is no problem ,being so far into the severe stage.
The only reason for hope is if she has a clear end-of-life diagnosis. That's the only time I've heard of people qualifying and I've been told that if Mum deteriorated to a permanent state of coma I could try to apply for a fast Track application.
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Just starting out
Ok so may be a basic question 37 pages in to a thread, but how on earth do you actually get the ball rolling for the initial CHC checklist ?
Mum is in a care home with early onset dementia, and apart from the memory loss she is no trouble to anyone - so would I be right to assume it is a long shot anyway ?
But firstly, how do we kick the thing off ? Who do we speak to to get it going ?
Ok so may be a basic question 37 pages in to a thread, but how on earth do you actually get the ball rolling for the initial CHC checklist ?
Mum is in a care home with early onset dementia, and apart from the memory loss she is no trouble to anyone - so would I be right to assume it is a long shot anyway ?
But firstly, how do we kick the thing off ? Who do we speak to to get it going ?
See the link below for the process in Bedfordshire.
K
https://www.bedfordshireccg.nhs.uk/page/?id=4830
I agree little hope of getting it, unless your Mum has lots of behaviour concerns, but no harm in doing some reading for when you do get one.
As some of you may recall I have been waiting since last July for for the CHC meeting, which had to be postponed for further information regarding Mum's behaviour.
Today I met with Social Worker and Nurse who agreed that Mum's behaviour last August ( when she was very agitated and hit 3 carers and another resident in her care home) qualifies her for CHC, because her care needs were unpredictable and intense. However, as she has been reasonably settled since September, she does not qualify from then.
As NHS continuing healthcare funding applies from 28 days after the checklist was submitted on 20/7/2016 i.e. 17th August. And will stop in September when she became more settled, she is entitled to two weeks chc funding. Has anybody heard of this happening ? I am so dumbfounded I don't know whether to laugh or cry !!!!
The Social Worker suggested I submit a claim for retrospective chc as Mum has been aggresive in the past. What does anyone think?
Today I met with Social Worker and Nurse who agreed that Mum's behaviour last August ( when she was very agitated and hit 3 carers and another resident in her care home) qualifies her for CHC, because her care needs were unpredictable and intense. However, as she has been reasonably settled since September, she does not qualify from then.
As NHS continuing healthcare funding applies from 28 days after the checklist was submitted on 20/7/2016 i.e. 17th August. And will stop in September when she became more settled, she is entitled to two weeks chc funding. Has anybody heard of this happening ? I am so dumbfounded I don't know whether to laugh or cry !!!!
The Social Worker suggested I submit a claim for retrospective chc as Mum has been aggresive in the past. What does anyone think?
Hi, I'm quite surprised reading through the thread about the wait time people have had and now questioning what is going on with my mother in law. She is in hospital so maybe it is different.
We had the triggers done 3 weeks ago and had the DTS meeting on Monday though the only people who attended was myself and wife, social worker and district nurse. We've been told we should hear in the next 7 days via post.
They seem to feel her health needs now overweigh her social/mental needs so chc funding should be a formality.
We had the triggers done 3 weeks ago and had the DTS meeting on Monday though the only people who attended was myself and wife, social worker and district nurse. We've been told we should hear in the next 7 days via post.
They seem to feel her health needs now overweigh her social/mental needs so chc funding should be a formality.
I'm glad things are looking positive and hope that your mother gets CHC funding.
At the end of my wife's DST meeting the Chair stated that they were unanimous in thinking that the criteria for CHC funding had been met and said that the confirmation by the Clinical Commissioning Group was more or less a formality (she'd only had one case that had not been agreed immediately and they had asked for clarification and then agreed). I'm just wondering what the Chair said at the end of the meeting.
