complete DST received and 'No' to CHC funding - planning for re-assessment now.....

[Brodie]

so I finally received the formal written-up DST report for my father and written confirmation that he is not entitled to CHC funding. (his MDT assessment was early December! ) on the plus side they have agreed to do a new assessment at the beginning of April.

my father has deteriorated since his last report and either his GP, CPN, SALT or mental health Doctor seem to be now visiting him on a weekly or fortnightly basis to review / change his medication, manage chest infections (he must have had 3 since xmas), review his behaviour..... which is (one of the reasons) why they agreed to conduct a new assessment.

under section 3 - Recommendations of the DST there are alot of comments that my father is 'stable and predictable' and therefore does not demonstrate a primary health care need.

I am sure other people have experienced this with their reports - so how to you argue these statements (i.e. stable and predictable) when this is the very nature of his disease i.e. a slow degenerative disease? or should I be focussing on demonstrating that his needs are becoming more complex and intense?

also they state - "The "interventions" that Mr xx requires assistance with largely relate to activities of daily living and are a consequence of his cognitive impairment". does anyone have a view on what they mean by "interventions" because to be honest if someone didn't intervene in his daily living he would be dead. he has very very limited cognition (scored severe on DST), is immobile and double incontinent, and on lots and lots of drugs and since the assessment his drugs are now being given covertly. In the terms of the DST can someone give me some examples of what they mean by " quality interventions"?

any help would be appreciated!

regards
Brodie

 

[Cornishman]

Hi Brodie

Just spent a good 30 minutes writing a reply and the "new and improved" app just crashed on me and I lost the lot

I'll start again

 

[Cornishman]

Hi Brodie

Sorry to hear your father has not been granted CHC. Unfortunately this increasingly appears to be the default position of CHC assessors, leaving it for the families to prove otherwise.

Assessors, in my experience, use a few "tricks of the trade", their whole modus operandi being predicated on an intent from the outset to find people ineligible for CHC.

I'll start by saying it is worth keeping at forefront of everything the mantra "Well managed needs are still needs". In other words, just because an individual doesn't "evidence" (to use assessors' parlance) a particular behaviour, condition or nursing need, it doesn't mean it doesn't exist. Indeed, good nursing care can have the effect of masking that need, but assessors, knowing this as much as we do, will still downplay a person's nursing needs, sometimes by using a stock set of words and phrases such as "comfortable", "not challenging ", easily managed", "contented" etc.

Unfortunately the CH sometimes don't help the situation by their record keeping. For example, if a person needs to be turned regularly because they're bed bound, thus managing the risk of bed sores and therefore infection, would you, as a carer, take a careful note of this requirement every day on a daily record sheet when it has been going on for years and was a well known and well managed need? Would you take a note when an individual is at risk of choking and has behavioural challenges at mealtimes, and this requires a degree of management every mealtime every day? Possibly not. But the assessor will likely seize on this omission by saying in the DST there was no or minimal evidence of x. Again, they know full well what's going on, but rely on the lack of written CH notes to justify their "findings".

Another tactic is to attempt to interview CH staff without the family being present. There are reports of CHC assessors turning up at the CH a full hour before an arranged appointment and before meeting the family and undertaking an assessment, and then talking to the CH staff alone with leading questions such as "Mr x is very comfortable isn't he?" or "Mr x doesn't present any challenging behaviours, does he?"

We have experienced a fair amount of these "smoke and mirrors" and my mother's CHC eligibility, granted some 4 years ago, was very unjustly withdrawn relatively recently.

We were given an opportunity to respond to the draft DST, and took many painstaking hours going through a mountain of CH and GP notes. This allowed us to counter-evidence much of what had been written, and also produce new evidence that had been "missed" by the assessor (note inverted commas!). I'm not sure much was taken as evidence at the Joint Decision Panel, but again, all part of the game they play out and it allowed us to be reasonably well prepared for the appeal panel last week.

Although you might find yourself in seemingly endless discussions on the minutiae of the DST narrative, domain scores and definitions, and I cannot comment of course on your father's assessment, I feel an area that is easy to miss is the bit about 'nature’, ‘intensity’, ‘complexity’ and ‘unpredictability'.

It is very easy for the NHS CHC assessor to make a sweeping statement in the closing recommendation of a DST that person x does not have needs that are "of a nature, intensity or complexity requiring continuing healthcare, nor are their needs unpredictable, and nursing needs are merely incidental and ancillary to their care" - very easy for them to say, but enormously difficult to prove otherwise. And they know it.

I'm not sure either what is meant by "quality interventions", but I'm guessing they're trying to say that the care interventions that are needed for your father's wellbeing can be managed by care staff, rather than skilled nursing staff. Again, difficult to prove otherwise, and another example where an assessor will deliberately understate someone's needs to get to where they want to be.

There is the much bigger question about the legality of the whole assessment process and a person's statutory right to free NHS healthcare, and whether LA social services can lawfully manage an individual with a demonstrable primary health need. But that's worthy of a whole thread in itself, and is discussed elsewhere on the forum.

Good luck, try not to be despondent and keep thinking you'll get the right decision eventually.

And keep asking questions here - lots of people with some experience and advice.

Best Wishes

 

[Saffie]

I'd like to just add that nurses in Nursing homes are understandably a bit defensive about the needs of a person, seeing such a need being evident as representing that their nursing is perhaps not up to the mark. This of course is not at all necessarily so but it is human nature to try to show that one is competent in one's job. It doesn't help us much though!

 

[cliveo]

so I finally received the formal written-up DST report for my father and written confirmation that he is not entitled to CHC funding. (his MDT assessment was early December! ) on the plus side they have agreed to do a new assessment at the beginning of April.

my father has deteriorated since his last report and either his GP, CPN, SALT or mental health Doctor seem to be now visiting him on a weekly or fortnightly basis to review / change his medication, manage chest infections (he must have had 3 since xmas), review his behaviour..... which is (one of the reasons) why they agreed to conduct a new assessment.

under section 3 - Recommendations of the DST there are alot of comments that my father is 'stable and predictable' and therefore does not demonstrate a primary health care need.

I am sure other people have experienced this with their reports - so how to you argue these statements (i.e. stable and predictable) when this is the very nature of his disease i.e. a slow degenerative disease? or should I be focussing on demonstrating that his needs are becoming more complex and intense?

also they state - "The "interventions" that Mr xx requires assistance with largely relate to activities of daily living and are a consequence of his cognitive impairment". does anyone have a view on what they mean by "interventions" because to be honest if someone didn't intervene in his daily living he would be dead. he has very very limited cognition (scored severe on DST), is immobile and double incontinent, and on lots and lots of drugs and since the assessment his drugs are now being given covertly. In the terms of the DST can someone give me some examples of what they mean by " quality interventions"?

any help would be appreciated!

regards
Brodie

Hi Brodie,

Out of interest do any reports from your mental health Dr mention that your father's condition is not predictable or would he /she be prepared to state that.

 

[Brodie]

thank-you for your comments - they contain some great ideas and I will definitely use them/follow-up on them! and a big thank-you to cormishman for typing his response out twice!



another quick question for you all - management of my fathers chest infections seem to becoming a key need now for the NH & risk for my father and the other domains don't seem to allow us to adequately reflect this. is this something that I should try and get included into care Domain 12 - other sign. care needs. (we had nothing in this domain last time).

 

[Cornishman]

Brodie,

I once saw an article entitled "Don't let the 12th domain cost you your CHC" or something similar.

What the piece went on to say is that because the CHC is essentially a "scoring" system across the domains, the lack of anything in the last domain "Other" could result in a person just missing out on CHC eligibility. Of course, for that very reason, CHC assessors commonly leave it blank, and if challenged, will argue that everything is covered in the preceding domains. So, noting this, we did try to argue for certain elements of my mother's care to be included, but I'm not sure the CHC team were at all convinced.

Having said all that, I don't think it would be entirely unreasonable for an assessor to describe and note your father's history of chest infections under the "Breathing" domain, but that's just my opinion - others may have a different view. But as with so much else, it should most definitely feature somewhere and be given due weighting.

The imperative with everything is evidence - the more the better and the more compelling the better. The CH should help you with this, and possibly the GP.

Regards

 

[Brodie]

Cornishman - I googled the title of your article and found the following on a website about advice for CHC funding: ( it is actually called "Don’t let the 12th care ‘domain’ cost you your home")


‘Other’ health needs

Needs could include things like fluctuations in blood pressure, cardiac problems, diabetes and blood sugar issues (poorly accounted for in the Nutrition domain), some skin problems unrelated to pressure sores, extreme fatigue and severely disturbed sleep, oral hygiene, brittle/yellowing nails and associated deficiencies or infections, anaemia, nosebleeds, risk of attack from other people in care, temperature/fever, poor immune system and susceptibility to infection, problems with eye health, vomiting, dizziness and nausea, cholesterol issues, difficulties taking blood samples, whether someone is on the Liverpool (end of life) Care Pathway and should be fast tracked for funding – anything that has not been included elsewhere in the assessment notes and adds weight to your case for funding

So always check that 12 (not 11) domains have been assessed and completed in any full assessment for Continuing Care funding.


I love Talking Point - such a great place to share info...

regards
Brodie

 

[Egeon]

12th domain = eyes glaze over

Put the information in ALL the other domains instead where relevant

 

[Cornishman]

Egeon

"Eyes glazing over" is probably about the best description of NHS CHC teams' attitude to the 12th "Other" domain I've heard.

Therein lies the problem.

The 12th domain "Other" is about as vague and non-descriptive as the DST gets, and therefore is frequently and deliberately left blank by CHC assessors.

And yet this domain forms an integral part in the accumulation of scores (or at least, it would if there was actually anything written in it!), so it is very important to ensure that if there is something that merits inclusion, it should be included. The NHS framework document gives a number of examples of what these things might be.

The assessors prefer to say everything is covered in the other domains. As the saying goes: "They would say that, wouldn't they?"

But considering it is possible to be scored "Severe" in this domain (unlikely, but supposedly possible), it's another area where we shouldn't just be kowtowed by assessors into allowing them to write the DST in just the way they like, and let them leave this bit blank.

I agree an individual's condition and needs can be shown across more than one domain where applicable, and the framework states that, but that's not to say the other 11 domains cover everything - the 12th domain is there for a purpose.

 

[Saffie]

But considering it is possible to be scored "Severe" in this domain (unlikely, but supposedly possible), it's another area where we shouldn't just be kowtowed by assessors into allowing them to write the DST in just the way they like, and let them leave this bit blank.

To be honest, surely if the score is 'Severe' in the 12th domain, it would have impacted somewhere in the other 11 domains. Most of the conditions mentioned above by Brodie would have influenced some of the other domains in some way.

Yes, it is there for a reason, but that is to mop up anything not already covered by the other 11 and if it is not even mentioned on those, I doubt it would be considered 'severe'. This is possibly why the DST team don't pay that much heed to it.
However, as usual, I stand ready to be corrected!

 

[Brodie]

I agree with all your comments - but it seems a waste of a domain not to try and use it. I re-read the breathing description and it talks about COPD, infections which my father has plus asthma so obviously chest infections should be included into this domain.

I am asking his GP to produce a medical statement / report on my dad for the assessment which may helpfully provide some indication / weight as to the areas of increased risk for him now.

I am trying hard to play the game also... or maybe just clutching at straws!

 

[Cornishman]

Brodie

Keep going! As you say, it's a hard game, and use whatever resources and information you can lay your hands on, and exploit every nook and cranny of the NHS framework document and DST in your favour. Just like the CCG do!

I've yet to be able to report success on either our retrospective claim or our ongoing battle over my mother's CHC withdrawal, but watch this space! Others on here have said elsewhere that an underlying tactic by some CCGs is to try to "grind you down", so don't let them!

You may have a long road ahead, but as the saying goes, a long march starts with the first step.

Best wishes and happy to keep posting stuff if it helps.

 

[Brodie]

I have phoned or emailed them every week since the 12 January chasing them for a response & new assessment date - I was hoping to grind them down!!

it seems to have worked as I got my new re-assessment date!

 

[sue38]

I have phoned or emailed them every week since the 12 January chasing them for a response & new assessment date - I was hoping to grind them down!!

it seems to have worked as I got my new re-assessment date!

Well done. Keep grinding them down .

 

[Farmergirl]

I got full funding for mum ONLY because I stood my ground and was really prepared.
I got a copy of the form they used and the guidelines. The care home staff were really good and together we went through the form highlighting certain bits. Then I got a hold of the Coughlan stuff.

The big thing I did was at the assessment I kept refering back to if mum wasnt in a care home would she be at risk?
So therefore, as mum has cataracts (they cant operate due to her huge amount of meds and heart problems) she cant see (high risk).
She had 3 falls in 3 weeks (all documented at care home) (therefore high risk of falls).
She displayed inappropriate behaviour (getting into bed and sitting on male patients knees), and we argued that if she was at home this would put her in considerbale danger.
Perhaps speaking to your doctor may help you too?
Good luck and dont give in.....

 

[Brodie]

thanks farmergirl for feedback. I am trying to get as prepared as possible! I will definitely use "what risk he would be at is he wasn't in a care home"

I really want to get as much evidence as possible to support this process.

re cliveo's earlier comments - I have spoken to mental health specialist and asked for supporting letter - she said it might be better for CPN nurse to attend meeting. she actually laughed (with surprise) when I said the previous report said my dad was described as predictable - she said my father's behaviour is definitely not predictable!

I have also asked his GP for a supporting letter - focussing on last 3 - 4 months and changes in my father condition and meds and what risks he is at now. I have a call with him tomorrow so hoping he will agree to letter.

a pre-meeting had been agreed between myself and nursing home so we can all get on the same page regarding my dad's assessment - it will also help me understand any weaknesses they may have in discussing my dad's needs - especially if they are going to 'gloss over' any areas.

fingers crossed this will all pay off.

 

[Egeon]

a pre-meeting had been agreed between myself and nursing home so we can all get on the same page regarding my dad's assessment - it will also help me understand any weaknesses they may have in discussing my dad's needs - especially if they are going to 'gloss over' any areas.

fingers crossed this will all pay off.

I was told that they will use 'well managed needs' in the opposite way to what they describe in the NF... they will downplay the needs as if they don't exist any more, but it is the specialist care that is given that helps to improve things