PSP Association
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Getting and Keeping CHC

I am currently reading the superb article on CHC which SueBatt placed in a post.

landmarkchambers.co.uk/user...

One of the things that stands out for me is that a key criterion for qualifying for CHC is:

"The nature or complexity or intensity or unpredictability of the individual’s health care needs (and any combination of these needs) requires regular supervision by a member of the NHS multidisciplinary team, such as the consultant, palliative care, therapy or other NHS member of the team."

We are now going to seek input from whatever department we need as and when it is needed rather than our usual muddling through.

We will log all phone calls for advice, all clinic attendances and all home visits. This in itself provides evidence. Secondly we will pay attention and list all of those nursing duties we undertake ourselves. Such as PRN medication. That is medication taken as and when required. Despite Liz having capacity the general failure of her ability to initiate and her poor ability to sequence ("I need to get rid of pain, so I call Kevin and he will give me a pill." is a sequence put together to get the desired outcome), puts this into the nursing mien. A carer cannot make those decisions. Similarly a social carer cannot monitor symptom changes and make decisions as to what additional services or assessments are required. This too is nursing.

Anyone got thoughts on this?

What else was I going to do on a Saturday afternoon?

Ugh!

Waiving

Kevin

30 Replies
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Hi Kevin

So glad it's some help

Sue xx

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Kevin so Kevin are we classed as nurses? Even when we feel unwell we are still on call, xxx

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Chuckles - Nurses, plumber, cook, the list is endless!

No we are not classed as nurses, but we do nursing. As you know Social Care staff have a long list of things they are not allowed to do. Examples include monitoring symptom changes, filling dosette boxes. These are things which have to be done by a qualified nurse in a Nursing Home, or by us in the home. So to that degree they provide evidence that nursing input is required rather than social care.

Remember the CHC assessment is done on the basis of need. So all of your inputs are assumed not to be taking place and thus, without you they ask the question what would we have to provide clinically.

xxx

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This is a great post Kevin, one that I need to give much thought too!! Currently knackered and a trifle stressed!! I shall think about this and reply later. Thank you darling, how are you and Liz? X

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Waiving to you Amanda

Liz slips down bit by bit. I am having trouble understanding her speech now. We just keep getting up and doing it all again... then repeat, repeat, repeat.

We have good carers and that makes a lot of difference.

How is your Dad?

Come back with a reply about how your doing eh?

Hugs

Kevin

xxx

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I'm really sorry to hear about Liz! This bloody illness is bloody evil!! I'm pleased you have the carers to take the edge off....

Dad is often very confused and has difficulty explaining what he is trying to say! It's all shit in my mind!!

Love to you both x

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Ok Kevin, er well, here are what I think are nursing needs as far as dad goes....

Medications

Depressed

Doubly incontinent (although not sure this is a nursing need) except laxatives and suppositories are regularly required (so that must a nursing need)

Checking for bed sores and ulcers

Difficulty swallowing, risk of choking and aspiration

Hallucinates regularly

Gets very confused

Difficulty conversing and making himself understood

Lacks mental capacity

Are these nursing needs Kevin? Am I really answering correctly? Or lol is there a wrong or right answer? X

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Hi Amanda - grim reading indeed!

But, I guess so. You've always trail blazed for us.

Hey, and I ain't qualified mark anything here! lol.

Is your Dad comfortable. You fought so hard to get a good home.

Hugs to you

Kevin

xxx

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Bless you k!

Dad is soldering on, put it like that! Can't think how else to put it....a grim existence in my mind x

But yes as comfortable as he can be I suppose....

Ps so, are they nursing needs? X

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Yes, but I would put it like this:

Medications

- monitoring the effectiveness and side effects.

Depressed

- Monitoring mood, associated risks and possible need for clinical intervention.

Doubly incontinent (although not sure this is a nursing need) except laxatives and suppositories are regularly required (so that must a nursing need)

- NHS regard this as social care, but - monitoring bed sore risk and emerging infections is a Nursing task.

Checking for bed sores and ulcers

- Yes, see above.

Difficulty swallowing, risk of choking and aspiration. Monitoring and helping with food and being prepared to intervene if choking and monitoring signs of possible chest infections from aspiration - definitely.

Hallucinates regularly

- Monitoring hallucinations especially watching for command hallucinations is definitely nursing. Command hallucinations are the most dangerous kind. They are where the person feels they are being told to do something dangerous or harmful and that they must comply - Most likely the CHC Nurses don't know that and so you need to explain it to them.

Gets very confused

- probably not. Social care can work with confusion.

Difficulty conversing and making himself understood

- Probably not .

Lacks mental capacity. Interesting one! But let's not start talking about the Mental Capacity Act. The home should have assessed capacity and involved you in best interest decisions. Erm... Bet you a fiver you blinked and missed that part of their induction. If ever the home annoys you one day just ask about their Capacity assessment and what decisions they are making in your Dad's best interests. But I am being naughty now.

I would add to your pretty full list.

Looking for and assessing new needs with a view to referrals for clinical assessment (Drs., Speech therapists, physio, OT, neurologist.)

Looking for any co-morbidity. Fancy talk for secondary illnesses which can be missed because folk assume its part of PSP. Signs of heat attack ignored etc.

Coordinating care and treatment as the case is a complex one. "Complex illness" scores high in CHC.

There will be other things to. Your list was fairly full.

Love

Kevin

xx

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Wow! Thanks Kevin! Have I ever told you how brilliant you are! Thank you! X

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Now that was good reading....very interesting , sad , and exhausting to have to proove and fight and prove some more for services....and what kind of services...We in the US were only given services when we were ok'd for disability insurance. And we only recieved the services the doctor deemed worthy.....He did pretty well by Bruce...though I would have appreciated palliative care about a year earlier.....doc didn't recommend that until last days.

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Hi AVB

Our system grew out of two different roots.

Back in the 1940's folk saw social care and medical care as two separate things.

The National Health Service charter states that all clinical care is free at the point of delivery. We pay National Insurance (think additional tax) and get all of our clinical care free.

Social care delivered by different agencies (Think city or county level) went down the means tested route.

Both systems have been modified to keep up with changing demographic demands, but now the two sit uncomfortably beside one another.

There are calls at national level for the whole system to be reviewed. However with a government in place trying to save on public spending we are unlikely to get anything palatable.

Meanwhile we live in a mess!

At least our health care costs about 1/7th of yours in the states.

The U.S. on the other hand suffer from the problem that insurance companies pay up and hospitals and clinics have no need to work toward any sort of efficiencies. The insurance companies pay up and increase the cost of policies accordingly.

Both systems are deeply flawed.

Hey ho... its the way it goes.

Wishing you well

Warmly

Kevin

xxx

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Well imperfection comes with the ideas of man especially when generated and controlled by man.

We over think and under service. Sort of like Noah's Ark...everyone on board was saved but those who denied, disagreed or just didn't care were all awash!

and so it goes....It's nice to have a someone who seems highly knowledgeable offer their information to others who can use it ....

How's Liz?

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Hi AVB

Liz seems more distant now. She struggles to speak and I struggle to understand. So conversations are really quite limited.

More and more her face adopts that PSP fixedness.

Very saddening. But I know you went through all of this.

I just try to hang on in there.

Love

Kevin

xx

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Well you're a wonderful husband and Liz is very lucky to have you....

I see Bruces face with every picture that people share of their loved one...."PSP fixedness"

AVB

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Thanks AVB

I do my best.

I will not forget the incredible fight you put up in the last week.

That fixedness is so grim isn't it? Its like the light going out of my lovely.

Warmly

Kevin

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I know my friend, I am lucky in that I don't feel; the need to ask "why me, or Bruce" and that my faith really helps me ....most of the time.....I feel so fortunate to have you all to help me through it....It's also good to be a part of someones healing...

I still am scared of getting a job.....My insecurities overwhelm me...I don'y know if I can be what anybody needs..... oh well I'm whining... Thsi is where B came in and supported my confidence.....now it's my responsibility......a lot of prayer, a couple of interviews for jobs and siezures due to stress....I am affected by flashing lights as well. We had a party for my sons 30th and they had a disco ball....I thought this new med would help me overcome the stresses thereof......2 seizures later....I guess not...hahahah ....

Have a good everything...

Andrea

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Interesting post. Got refused this week on 2nd CHC assessment, not had the letter but was said in the MDT.

It was stated that no nursing was done and all social care by the carers and me but I do PRN meds and Mum see neurologist every 6 months.

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Its getting harder to get as they tighten their belts. Means we have to fight harder.

Shout me if I can help!

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Thanks will do as will appeal I think but the woman implied not eligible even with appeal. Also said as patients progress further they are less likely to qualify.

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She is talking horse proverbial.

You have a right to appeal.

They just don't need the paperwork.

They have to evidence their decision.

The 'progress further, no longer qualifies' is based on diminishing risks as the person is less mobile. More CHC's are using this one. It seems to be a 'loophole' they are trying.

However if the illness is complex and there is expected marked deterioration within three months the person does have a good case to continue receiving CHC.

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Yes thats what she said about loss of mobility and being bed bound that risks eliminated so no longer qualify.

She did say I can appeal but also implied wouldn't change decision but said I can contact her anytime to get another full assessment done and won't need to wait for DST from social worker prior as they take too long to come out to do them!

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Spiral what is PRN? Forgive my ignorance x

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I'm sorry Ss

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Not sure what the technical meaning is but it is medication that is administered as needed. Such as extra painkillers

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Thank you darling I was a bit lost there x

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I only know that from when Mum has been in hospital and looked at her drug charts and there is a separate PRN section that had other meds detailed so asked a nurse what it was.

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The thought of reviews scares me silly, Ben only just awarded CHC funding and instead of feeling relief I feel anxious that it could all be taken away in the blink of an eye. I mentioned to Bens case manager that I was concerned that the funding could be stopped and she said it was most unlikely but I take that with a pinch of salt. As if there isn't enough stress in this world of PSP, seems they want to bleed you dry in so many ways.

Love Kate xxx

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Forgive my ignorance K1 but it seems to me that there should be an app for this. When I go to the Dr., they put all form of information on the app while i bemoan my problem aka, life. I am sure there are questions being answered and put into the database as we speak. This makes recollection alot easier. and because it is in the medial network, one doc can find info from another doc pretty easily. So what I am saying is that having an app where the carer fills in absolutely everything they do for the patient immediately would be a tremendous help in expediting CHC services..... and a tremendous help to the carer having to remember who did what with and when and how much and if the patient was able or unable to assist with care and management of their own health...ad infinitum...

Being outside of the CHC spectrum I feel like I can see the best and worst of both worlds. At least somebody cares and is willing to help the patient .... but only if the carer has all the t's crossed and I's dotted! Infact Social Security Insurance would not have been made available if my son hadn't stepped in and figured it out for us...it took two years of sorry''s....

AVB

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