CHC (Continuing Healthcare) support thread

[stanleypj]

Another thing I don't understand.

Why is it necessary for someone who is in chronic pain to have to be dosed up permanently on morphine before a MDT/CCG will even consider a "severe" in the drug therapy domain?

I'm sorry no-one has responded yet JTK. Perhaps if you say a little more about how you came by this information it might prompt others to share their experience in this area.

This may be a case where one CCG has such a policy or it might be common or it could be universal. It helps to clarify these things so that at least people are aware of the facts.

 

[nitram]

"Why is it necessary for someone who is in chronic pain to have to be dosed up permanently on morphine before a MDT/CCG will even consider a "severe" in the drug therapy domain?"

Analysing the requirements
chronic
If a condition is acute it does not score.

dosed up permanently on morphine
If the pain could be controlled by eg paracetamol it would not be severe.

 

[stanleypj]

Thanks nitram. Whilst the second point seems pretty self-explanatory, it might be helpful if you could explain the chronic/acute point a little more fully.

 

[nitram]

"...it might be helpful if you could explain the chronic/acute point a little more fully..."

Acute - resulting from an injury, or infection, which will heal or can be cured.

Chronic - persisting for a long time or constantly recurring.

 

[stanleypj]

Thanks nitram.

 

[stanleypj]

This relatively recent guide to CHC looks as though it might be useful and maybe of particular interest to people in the West Midlands:

https://www.england.nhs.uk/wp-content/uploads/2015/04/guide-hlth-socl-care-practnrs.pdf

 

[JTK]

"...it might be helpful if you could explain the chronic/acute point a little more fully..."

Acute - resulting from an injury, or infection, which will heal or can be cured.

Chronic - persisting for a long time or constantly recurring.

Thank you StanleyPJ and Nitram

 

[notsogooddtr]

Just finished CHC assessment,surprise surprise no primary health need.The system is loaded against the pwd.I feel totally demoralised and worn out.Which is exactly what they want.

 

[stanleypj]

I can understand your feelings. It must be so frustrating. No wonder you are worn out.

But when you feel a little bit rested it may be worth considering. I bet things occurred to you during the meeting and probably since that you could boost the case with. .

 

[notsogooddtr]

I can understand your feelings. It must be so frustrating. No wonder you are worn out.

But when you feel a little bit rested it may be worth considering. I bet things occurred to you during the meeting and probably since that you could boost the case with. .

I think it's the sheer unfairness and arbitrariness of the system that has upset me.I would definitely score my dad as severe for cognition,they were debating moderate/high.Of the 5 people in the room 2 had never met him before,1 was site manager with very little contact,me and a carer who although a lovely person did not seem to understand why she was there.I will await a copy of the completed DST and regroup.

 

[stanleypj]

I think it's the sheer unfairness and arbitrariness of the system that has upset me.I would definitely score my dad as severe for cognition,they were debating moderate/high.Of the 5 people in the room 2 had never met him before,1 was site manager with very little contact,me and a carer who although a lovely person did not seem to understand why she was there.I will await a copy of the completed DST and regroup.

I think most of us would agree that the system is as you say unfair and arbitrary.

Your plan seems sound to me and there may be TP members who can help (via this thread or by PM) when you get the DST document.

 

[notsogooddtr]

I think most of us would agree that the system is as you say unfair and arbitrary.

Your plan seems sound to me and there may be TP members who can help (via this thread or by PM) when you get the DST document.

Thank you for taking the time to respond.I feel as though I've been fighting the authorities for the past 4 years,having a moment of self pity.The main thing is my dad is well cared for.

 

[2jays]

Yeah.... I thought that's what they meant

Yet ANOTHER battle is on the horizon for me I guess

We have been self finding for 4 years. Over 2 of those years at existing care home without any input at all from "those here to help" outside of the care home.

Positive thinking..... After 4 years, mum suddenly has a social worker who will be at the CHC meeting

Positive thinking, because I positively know..... the day of the meeting will be the first time this social worker will have met mum

As far as I and the care home are concerned, mum will score 2 A's and 3 B's

Watch this space to see what "they" score mum as.......













Sent from my iPhone using Talking Point

"They" have scored mum 5 medium and 1 high

And indicated that she is very unlikely to get CHC

Didn't record all the falls mum has had, due to the type of recording the care home do. A fall with a bruise goes onto the falls chart. A fall without bruising doesn't, it's mentioned in the daily notes

Also they only used the time between end of October and now. Not how mum was before then. I was told I should have applied then as mum has changed so much since leaving hospital.

It was noted that mum is kept in her wheelchair with the seat belt on for most of the day. Her "falls" mostly happen during late afternoon/early evening when she is in her room so are unwitnessed. I mentioned how can she be assessed for falls if most of the day she can't get out of the chair to walk....

Was told by social worker and nurse assessor that perhaps this care home isn't the right place for mum now

Such a fluffing waste of time

 

[AlsoConfused]

Sympathies 2jays.

Didn't record all the falls mum has had, due to the type of recording the care home do. A fall with a bruise goes onto the falls chart. A fall without bruising doesn't, it's mentioned in the daily notes

The only way to counter this behaviour is to get at the daily notes yourself and produce your own document. Which is fine ... and I did it ... but it's not always easy. There was a question whether I was entitled to see my Mum's daily notes; I've never been shown her care plan because allegedly this material is confidential to the nursing home (but can be shown to the CHC assessor!!!).

It was noted that mum is kept in her wheelchair with the seat belt on for most of the day.

There's clearly a reason why your Mum has to have the seat belt on - ie it's to stop her falling. Therefore it's "a well-managed need" and still counts.

Grrr!

 

[JTK]

Well Managed Needs - Permanently Removed or Permanently Reduced

If I understand the latest MDT/CCG thinking about our loved one (LO) correctly the MDT/CCG believe because our LO was being given initially an opiate several times a day for chronic pain and now, months later, only needs it once or twice a day, what was once thought to be a “severe need” is now, at best, just a “high need,” and the MDT/CCG deem that the pain is being managed so well that the “need” has been “permanently reduced.”

You don't need a medical degree to know that medicine is not an exact science. My observations tell me the medication our LO was prescribed was being overused at the beginning and simple trial and error over time has made that overuse obvious. The opiate our LO was prescribed is a Class A drug, it has serious side effects if not closely monitored (particularly when our LO’s doctors have to take account of the many other drugs our LO is taking to stay alive) and it is usually prescribed to manage end of life care and childbirth. One of my lasting memories growing up was watching one of the UK’s most distinguished playwrights drinking a liquid form of this drug to relieve his severe pain so that he could give his final interview.

As far as pain science is concerned, there are no reliable objective tests (medical or otherwise) to decide how intense someone’s pain is. Pain, like beauty, is entirely subjective and in the eye of the individual. Pain thresholds are also complicated by ethnicity, genetics and whether you are male or female. But how do you find out just how much pain someone is in when they can no longer communicate reliably how they are feeling because of significant cognitive deterioration?

There is no sense in which taking the medication “permanently removes” the pain. It does not “cure” the pain. As a matter of science at best the opiate provides (assuming that a “safe” dose is given) perhaps several hours of “relief” from pain when our LO is awake. Is that enough for the MDT/CCG to say the need (chronic pain) has been “permanently reduced” because it is being “well managed”?

 

[JTK]

Permanently Reduced & Why The Pretence that a range of Domain scores may be enough?

What does “permanently reduced” actually mean? I understand the concept of “permanently removed” in the sense of “cured,” or “it won’t happen again.” But “permanently reduced" in the context of NHSCHC eludes me.

Also, are we the only one located in a CCG area where, if you don’t score one “priority” (and let’s face it based on the descriptor’s used if you are scoring “priority” you are at serious risk of losing life or limb! And someone should be speaking to a lawyer about a negligence lawsuit!) or “two severes” in an assessment, you just know that no matter how many highs or moderates or other scores your LO achieves during an assessment, it is obvious the CCG will refuse NHSCHC funding?

 

[stanleypj]

You make a powerful case on 'permanently reduced' etc JTK. If you are appealing the decision this does seem a serious weakness in the CCG's case for rejection.

 

[nitram]

[devil's advocate]

The medication has been reduced from 'several times a day' to 'once or twice a day' and this dosage is stable and provides adequate pain relief.

This maybe because the pain has decreased or because the medication was initially over prescribed or, if PRN, administered.

The higher dosage indicates a severe need.
The lower dosage indicates a high need.

[/devil's advocate]

 

[JTK]

[devil's advocate]

The medication has been reduced from 'several times a day' to 'once or twice a day' and this dosage is stable and provides adequate pain relief.

This maybe because the pain has decreased or because the medication was initially over prescribed or, if PRN, administered.

The higher dosage indicates a severe need.
The lower dosage indicates a high need.

[/devil's advocate]

Thanks nitram and stanleypj

An elegant devil's advocate argument nitram.

It is now impossible for the patient to articulate in any reliable sense whether the lower dosage has "stablised" the pain or to articulate reliably how intense the pain is. So should the MDT/CCG be given the benefit of the doubt?

Unless I have misunderstood how the drug works, factually this pharmaceutical gives no more than temporary relief for several hours. Hence why it has to be readministered. Once the analgesic effect has worn off logically the patient's pain returns. If the patient is given too much the drug would be fatal. As I said we are talking about administering a Class A drug used routinely for end of life care to a patient who (we hope) is not at end of life!

Thirdly, once the current dosages have been administered, and the drug has had time to take effect, even now when the patient is moved or transferred, the patient's carers (and I) observe the patient experiencing pain.

If my argument does not hold water then the words mentioned in the Secretary of States so called guidance that well managed needs are still needs and should not be marginalised are indeed just empty and entirely meaningless words.

I am also mindful that the courageous Pamela Coughlan (whose needs were stable at the time of her court case) would struggle to score a single "high" score if she were to be assessed using the 2012 Decision Support Tool criteria. However her Majesty's Court of Appeal in England & Wales have effectively decided that her needs are such that she should be able to reside in ANY CCG area and be found eligible for NHSCHC.

Our Loved One has needs some of which might be stable, some of which are not stable, which are the same as or greater than Ms Coughlan's and our LO's needs are primarily health.

 

[PeggySmith]

Our Loved One has needs some of which might be stable, some of which are not stable, which are the same as or greater than Ms Coughlan's and our LO's needs are primarily health.

Same here although slightly different reasons. By the way, if you watch the video lecture to the end, Pamela Coughlan would have scored none, low or moderate in the domains. Not a single severe or priority to be seen. What a mess!

Stanley PJ thanks for starting this thread and ESPECIALLY thanks for the Youtube link which is really, really helpful. I won't apologise for repeating it here as the thread is growing and some people might be missing it: https://www.youtube.com/watch?v=HrpFLLwGqhs