Continuing Healthcare Assessment

Specific disabilities and conditions
1

Hi Everyone

My Mum (almost 84) is living in an EMU unit in a residential care home and has Vascular Dementia. She has been there for 12 months, having being discharged from hospital as being unfit to return home. A DOLs is also in place.
She had the CHC assessment before being discharged from hospital and did not qualify for NHS funding. She does however qualify for some LA assistance, but my Dad has to pay quite hefty top ups.
Over the past year, her condition has deteriorated substantially, to the point where she is unable to walk or weight bear (a hoist is used on her), she is completely incontinent, she is unable to feed herself, has very fragile skin (regular skin tears)and has lost almost all mental capacity.
My questions are:
Should she have another CHC assessment? Should this be done automatically or does it have to be requested?
If she now qualify for NHS funding, will this mean she has to be moved to a nursing home?

Any advice will be greatly received.

Many thanks

2

One word … DEFINATELY !

Main CHC / NHS Continuing Healthcare thread :

https://www.carersuk.org/forum/support-and-advice/all-about-caring/chc-coughlan-grogan-judgements-pointon-ruling-nhs-contuing-healthcare-nhs-fnc-hospital-discharges-all-here-35998

( FOLLOW THE COLOUR ! )


CHC: APPLIED FOR BUT REFUSED ?

NO CHC ? : NHS CONTINUING HEALTHCARE AS AN ALTERNATIVE ( FULL SP )

TOP UP FEES ? : CHC / NHS CONTINUING HEALTHCARE ( NO SUCH THING !!! )

POINTON CASE : CARE AT HOME( I’ll change POINTON to a different colour … almost clashes ? Now done … all I now need is Pointon to complain ? )

NHS NURSING FUNDED CARE : AN ALTERNATIVE TO BOTH CHC / NHS CONTINUING HEALTHCARE

Enough to answer your immediate question ?

Heavy going but … said System was designed that way … on purpose ?

3

Thanks Chris

However this doesn’t answer all of my questions.

If she qualifies for NHS funding, I believe the funding is somewhat less that the cost of the care home. Does this mean that she will need to be moved from the EMI unit into a nursing home? I would like to avoid this if necessary.

Who do I contact to arrange the reassessment as the c are home do not seem to know.

Kind Regards

4

CHC / NHS Contining Healthcare is FREE … whole section towards the end on that … TOP UP FEES … highlighted earlier.

Are you being requested to pay on top of the funding so generated ?

Or … a case of the NHS funding a " Silver star " package whereas you’re seeking a " Gold star " one ?

If it’s on a " Needs " basis , it’s the NHS’s problem … not yours.

An ancillary link I occasionly use in addition to whats in the main thread … under CHC / NHS CONTINUING HEALTHCARE : PROBLEMS ? ( LINKS TO EXTERNAL SITES ) :

17 untruths about NHS Continuing Healthcare funding

You will find the information therein very useful … including guidance on " Reassessment. "

So many to choose from … I limited those to actual links to save expanding the thread by a factor 5 / 6.

( Links … akin to appendices in a book … for further reference … some as long as a whole , additional , chapter. )

As a general guide , and targetted for dementia , the Alzheimer’s Society is also recommended … specialists in help and support for dementia sufferers :

https://www.alzheimers.org.uk/get-support/help-dementia-care

Section :

****

Alzheimer’s Society’s view on NHS Continuing Healthcare .

https://www.alzheimers.org.uk/about-us/policy-and-influencing/what-we-think/nhs-continuing-healthcare

In addition , AGE UK … very good , in isolation , on CHC / NHS Continuing Healthcare :

NHS continuing healthcare | Free care for people with significant health needs | Age UK

Their fact sheet … available from the link on that page … is one of the best there is … 34 pages in .pdf format :

[https://www.ageuk.org.uk/globalassets/age-uk/documents/factsheets/fs20_nhs_continuing_healthcare_and_nhs-funded_nursing_care_fcs.pdf

Slightly more fine tuned than " Our " main thread when it comes to dementia … just one condition that normally triggers
CHC / NHS Continuing Healthcare / NHS Nursing Funded Care.

############################################################################

We , on the forum , are not experts , nor legally qualified … we just do the best we can to assist fellow carers …
from our own knowledge and experience as carers … information is my trait … where to look , and where to go
… a traffic cop if you like … or a mere librarian ?

5

Hi Chris

Just to let you know that I have just been contacted by Social Services to confirm that a CHC assessment has been booked as I requested.

The Social Worker told me that if my mother is assessed as having care needs only (but qualifying for CHC), she will need to be moved from her existing residential care home to a council run home and we will still need to pay top up fees. If she is defined as having nursing needs, she will need to be moved to a nursing home and we will still need to pay top up fees. If she is assessed as needing ‘end of life care’, then that would be free.

I feel that she social worker was trying to put me off, however I have insisted on the assessment.

What are your thoughts? I doubt whether she will be assessed as having nursing needs, but we would prefer for her to remain in the existing care home if necessary.

6

Hi Debby.

Very interesting !

My thoughts or advice ?

If the latter , one for those qualified to do so out there.

Given the circumstances , my recommendation would be AGE UK … meat and drink to them ?

Main web site and contact details :

https://www.ageuk.org.uk/

Ways to contact us and FAQs | Age UK

( Now , even an Online Advisor ! )

My thoughts … social worker … in whose interest is she acting … possible conflict ?

Top up fees ?

Nothing but a try on !

One horrible thought … CHC application … social worker taking the lead ?

According to the " Book " , yes … PRELIMINARY assessment ONLY … is allowed … perhaps this part should be rewritten ???

( If I have a toothache , do I see my doctor … or a dentist ? Given what’s on the preliminary assessment menu ,
replace DOCTOR with BOOKMAKER ??? )

__

What is the preliminary assessment ?

First, you’ll have a preliminary assessment of your needs using a checklist. > This might be carried out by a doctor or a nurse when you’re being discharged from hospital, or by your GP or by a social worker.
Preliminary assessment checklist

The checklist covers the following categories ( Also known as " Care domains " ) :

behaviour.
cognition (understanding).
communication.
psychological/emotional needs.
mobility (ability to move around).
nutrition (food and drink).
continence.
skin (including wounds and ulcers).
breathing.
symptom control through drug therapies and medication.
altered states of consciousness.
other significant needs.

What is the full assessment ?

If the preliminary assessment shows that you may be eligible for CHC, then you’ll have a full assessment. This will be carried out by a multi-disciplinary team, consisting of either :

two healthcare professionals from different healthcare professions,
or
one healthcare professional and one specialist community care assessor.

The multi-disciplinary team will use a checklist similar to the one used in the preliminary assessment checklist and score you on how serious your needs are in each of the categories in the checklist.

Because most of the categories considered in the assessment process don’t relate to mental health, and because of the way they are scored, people with only mental health problems are rarely considered eligible for CHC, as opposed to those with physical health problems. >



AGE UK … let them loose on this !

CAB and the Carers UK Advice Team in the wings ???

7

Hi Chris

The Social Worker called back to say that the District Nurse which serves the care home has agreed to do the preliminary assessment (says that sometimes they refuse??) and that if Mum qualifies for a further assessment they will be in touch.

I am pretty certain that she will qualify as she is no longer mobile at all and needs to be hoisted by 2 staff members, she is doubly incontinent, is unable to feed herself (using any form of cutlery and also needs help holding a cup) and has very fragile skin (many tears, bruising etc). My main concern is that they will move her.

The social worker said that she may need a nursing home (unlikely in my opinion) or may be moved to a different care home (presumably cheaper than the current one). She has only been in residential care for a year and currently lives in a secure unit (EMI) in a residential care home which other than a few minor issues we are very happy with (her clothes and toiletries are constantly going missing). It was very hard to find a home with an EMI unit a year ago and I feel we were left with a choice of 2. The current one is very close to where I live, so very convenient for visiting. If she does qualify for CHC, I wonder if she will be forced to move to cut costs. This would really upset my father who is also 84 and suffers from cancer as he relies on me for transport for visiting and even though her dementia is very advanced, he would think any move would unsettle her.

I will contact AGE UK for their opinion, but in the meantime, thank you for your help.

Kind Regards

8

Your more than welcome , Debby.

CHC and related ?

No matter what’s contained in that main thread , the actual reality for anyone is a … nightmare.

More than enough evidence in a separate thread to suggest it’s rationed by design.

https://www.carersuk.org/forum/support-and-advice/all-about-caring/chc-rationed-high-time-to-ask-some-obvious-questions-33311?hilit=chc%20rationed

A deduction which is supported by a House report in that thread,

A mile course … just two furlongs in … and the fences get tougher.

Faced with that , no wonder so many give up in sheer frustration ?

2019 … is this really what it comes down to ?

Keep us appraised , Debby.

9

Just from my own memories - my brother had CHC for carers at home, so I have no experience of care homes or nursing homes.
I understand you must absolutely not be required to pay top-up fees. I would not think you will necessarily get CHC from what I read here (it’s a postcode lottery too). I do not know how many items on the CHC list you would record top marks for. The decisive one in our case was that my brother’s behaviour was detrimental to his own health - this made him a medical rather than just a social care case. Immobility and double incontinence were not enough.
The assessment should not, as said above, be wholly in the hands of the social worker - it has to be NHS and social services together.
There is, as you probably know, a halfway house whereby you don’t get awarded full CHC but a contribution to nursing home fees. If that is what the social worker means by top-up fees, it would make some kind of sense, but ‘top-up fees’ is the wrong terminology. And who is paying these fees? It has to be your mother, not you. Only your mother’s financial position is relevant.

10

Yep … if CHC / NHS Continuing Healthcare is refused first time around , NHS Nursing Funded Care MAY be an alternative.

Spelt out in detail within the MAIN thread.

Whole section , including legal opinions , on top up fees in that thread.

NO CHC ? : NHS CONTINUING HEALTHCARE AS AN ALTERNATIVE ( FULL SP )

NHS NURSING FUNDED CARE : AN ALTERNATIVE TO BOTH CHC / NHS CONTINUING HEALTHCARE

TOP UP FEES ? : CHC / NHS CONTINUING HEALTHCARE ( NO SUCH THING !!! )

11

Hi Debby

I am new to the forum and unfortunately I don’t get much time to go online these days.
I noticed your post & have been through a similar situation. CHC I doubt very much your mother will qualify for this funding. I have completed 6 checklists for my parents over the last 3 years & only just got them to agree an assessment. The person has to be very near end of life to guarantee a successful application.
Saying that keep trying and as each little deterioration in your mothers health is flagged up, ask for another assessment as that will bring you closer to a successful outcome. This is what they don’t count on people doing. Most give up and accept the initial decision.

I may have better news on the other hand regarding SS Top Ups. The person is assessed individually so when my mums financial assessment was completed initially. only mums income was counted savings were halved as in a joint account, We made a mistake as mum receives only a state pension her contribution to the bank account was small however dads pensions state & private were keeping the bank balance over the threshold. He continued to pay the Top Ups to the home when it was not his responsibility. It should have been picked up sooner as once I realised rather late that mum had met her higher threshold allowance at least a year previous, I phoned SS. Mum was assessed again. The SS contribution increased. Same when she reached lower threshold she now only pays £54 per week contribution until dad passes away then will become a full funder once again with the sale of their property. Obviously we are fortunate to have a fairly reasonably priced Care setting. If your mums Care home is pricey then that will have implications to what your local Authority’s contribution is. I would suggest a meeting with the Care home, SS Case Manager, Dad & yourself plus another financial assessment for mum would determine if any extra funding is available.
It is never transparent; there are no guidelines; you are never told what the maximum SS contribution is. They operate a policy very much that suggests ‘we are not going to tell you’ ’ if you don’t ask you don’t get!’ Like us we found out by default. While dad was plying the account with his pensions to pay mums top up Care home fees he went without any care for himself for 2 yrs. Hence I gave up my career to care for dad, as there was not enough money coming in to pay for care for both of them. Something he needn’t have done had he been notified. With that in mind Debby what happens if dad needs care at some point. He will need his pensions etc to support himself.
If you were already aware of all these things Debby my apologies; however I am always happy to chat as we have similar stuff going on. Both parents in 2 places. Mum in Care but still requiring a lot of support. I might have some tips on other issues re transport etc for you and you for me!

One must REMEMBER once your hard earned savings are depleted: Not only will they use your income from your property ; we all know these two facts however the one they don’t tell you about; the final sting is if you paid in all you life to a private pension don’t expect any assistance from SS towards your care fees as your income will be deemed too high.

12

Silly question I know but how long does it usually take for them to make a decision ? We had the initial meeting with CHC, Carers representative, social worker and Parkinson’s nurse beginning of Sept last year…

I chased it again on Friday but they still haven’t made a decision either way…usual excuses of need more paperwork, been on holiday and been busy every time I chase

I hate being pushy but feel if I don’t they will just forget about us

13

The " Book " suggests 28 days.

However , and in confirmation of other postings and reports , considerably longer in practice.

One onlne link will confirm the problems being experienced out there :

How Long Should I Wait For A Continuing Healthcare Funding Decision? • Continuing Healthcare

Be vary as this appears to be a commercial site.

NHS Sheffield has provided the following :

__

Sheffield CCG aims to make a decision on eligibility for CHC within 28 days, once a patient has screened in.

However, there are some occasions when it will take longer to make a decision.

For instance, it can take longer for some specialist assessments to be completed, and it may not be possible to make a decision about CHC until these have been received.

Similarly members of the multidisciplinary team sometimes disagree about whether the patient should be eligible for CHC. This can lead to an unavoidable delay in completing the assessment.

The CCG and colleagues in other agencies have agreed procedures to resolve such disagreements.

The CCG will write to the patient to tell them the outcome of their assessment for CHC.

This letter will include details of how to appeal against the decision that has been made.

If the person does not have capacity to agree to an assessment, the CCG may need to send letters about the assessment to a person acting on their behalf.

The CCG may correspond with someone who has been appointed to act on behalf of the patient in dealing with an appeal.


Not much but … better than nothing ?

14

Thats way too long. Put in an official complaint about the length of time its taken

15

A quick update for anyone interested…

Well, out of the blue I received a voicemail from Social Services saying that the CHC Assessment was negative and that was the end of it, I wouldn’t hear anything else.

It appears that the assessment had been carried out without me being notified or invited to be present. Nothing had been sent to me in writing and I hadn’t received a copy of the checklist.I obviously called back pointing these things out and was given the name and phone number of the district nurse who had carried out the assessment. As I’m sure you’re all aware, you can never get hold of a health professional on the telephone when you need them and it took a few days for her to call me back. In the meantime, I had checked my mother’s care plan and the was nothing hinting that an assessment had taken place, staff had no recollection of a visit from the district nurse. Sounds a bit fishy???

When the district nurse finally called me she admitted that this was the first CHC checklist she had completed. She wasn’t aware that she should contact a relative and ask for their input or attendance. She was unable to tell me what date the assessment had been carried out and gave me a name of the carer attending who the care home had never heard of. Had the assessment actually been carried out???

I insisted that the assessment was repeated with me and a senior member of care home staff present, by a district nurse who was experienced. This was completed around a month ago now and I still haven’t had any contact or received a copy of the checklist etc. I still don’t know if the checklist was positive or negative.

On a totally separate matter, my father is currently hospitalized and is suffering from Bowel Cancer. They are at the point where they want to discharge him and are trying to put a Palliative Care Package in place. I have therefore had a lot of direct contact with a Social Worker to discuss his needs. I told her about the issues I am experiencing regarding my mother and she was shocked at the level of service I received. She promised to make inquiries and we will see what happens.

To everyone else experiencing problems with the CHC assessment, I found help and advice from Age UK to be invaluable. the service from everyone else involved (district nurses, social services etc) to be appalling. You need to push, push and push some more to get answers and results. Argue until you are blue in the face. At the centre of all of this is your Loved One!

16

Thanks for the update , Debby … even if initially negative.

AGE UK ?

Mentioned in dispatches before for their help and assistance when dealing with CHC / NHS Continuing Healthcare.

They will open doors whereas an individual is will not be told even where the door is !

No real surprise there as they are fighting a constant battle against the system on behalf of their clients.

ps. WE ARE ALWAYS " INTERESTED " IN ANY PROBLEMS … many will be following this thread and be in a similar situation …
but remain silent … the bane of this forum wherein the few support the many.

17

This is a good link re CHC assessments too

Whilst the initial checklist can be done by an individual, remember these below, which I know you covered in your post but as a carer or family representative, you have rights too.

You should be told that you’re being assessed, and be asked for your consent.



The professional(s) completing the checklist should record in writing the reasons for their decision, and sign and date it. You should be given a copy of the completed checklist.

There has to be a paper trail, especially if a family want to make a formal complaint. Too many times they try fob us off with… she said, he said, they said. That is not acceptable.

An actual full assessment has to be undertaken by a multi disciplinary team.

When we had ours for hubby with MDT, although I was able to speak up for him I knew I would be outnumbered so to speak. Therefore I asked my daughters and hubbys brother to come in with me. As it turned out, we had a very good social worker, and we were successful.

If it turns out you are unsuccessful this time, any time there is a change in your mams needs you can request another checklist be done.

The main thing that concerns me is the home not having any record of a visit, or involvement in the checklist itself. Sounds fishy to me as after all, apart from your own knowledge of your mams health, they are the ones now providing your mams care and will know what her needs are, what concerns to raise etc.

Good luck with this, and please keep us posted

x x

18

Hi Everyone.

Another quick update - Out of the blue, I received a letter from the local CCG to say that a full assessment had been carried out (without me being invited to attend, although the paperwork said that I had declined to attend). They had revised the initial checklist carried out by District Nurses and Mum’s needs were as follows:
Severe 1
High 2
Medium 3
Low 5

They stated that she still doesn’t qualify for NHS Continuing Healthcare as her needs are not classed as primarily health needs.

I am aware that I have the right to appeal for 6 months and am waiting for Beacon to get back to me for some advice. I don’t agree with everything that is in the CCG report so I will keep trying and let you know what happens.

Thanks for reading and for your support.

19

Your welcome.

Sections in the main CHC / NHS Continuing Healthcare thread :

https://www.carersuk.org/forum/support-and-advice/all-about-caring/chc-coughlan-grogan-judgements-pointon-ruling-nhs-contuing-healthcare-nhs-fnc-hospital-discharges-all-here-35998

CHC: APPLIED FOR BUT REFUSED ?

NO CHC ? : NHS CONTINUING HEALTHCARE AS AN ALTERNATIVE ( FULL SP )

NHS NURSING FUNDED CARE : AN ALTERNATIVE TO BOTH CHC / NHS CONTINUING HEALTHCARE

20

Thank you, very useful information.