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NHS continuing care for dementia

Jackie3

Registered User
Nov 27, 2012
14
Oldham
I have just registered although my mum has had Alzheimer's for at least 5 years if not longer.

Her deterioration is getting rapid after a fall 18 months ago which resulted in 2 broken hips and a broken wrist. She is now wheelchair bound and my dad is her main carer with the help of carers in the mornings and occasional respite sessions. She is self-funding at the moment but the money is rapidly running out. After she had a recent stint in hospital with e-coli, septacemia and urine infection my dad is finding it increasingly difficult to cope with all the care that she requires but the cost of bringing in more care is also stressing him out. So, I was wondering if anyone has had NHS continuing care agreed for dementia and the related problems associated with it. My mum had an assessment when she was discharged from hoispital last week which resulted in her needs being assessed as 'no care or limited care required', which I think is wrong. I am challenging this but wondered if I am wasting my time.

Thank you - Jackie
 

chris53

Registered User
Nov 9, 2009
2,929
London
Hello Jackie, I just wanted to acknowledge your post and welcome you to Talking Point, much support, understanding and help here day or night-anytime, I am so sorry your dad is so stressed with care funding, hard enough for you all getting to grips with this unforgiving illness but worries about cost must be so upsetting especially as mum needs extra help now, I am sorry but I don't have any experience of your problem -yet! my mum in law has carers in 3 times a day-she has vascular dementia and the care package is funded, my mum has Alzheimer's and has been "written off" by social services as not needing help:eek: I guess it may be because I "look" after my mum although do not live with her, could the same thing apply with your dad? as he is looking after her and they may think that is enough?and to supply more help as she has got someone "caring" for her will cost them money when they already have dad doing most of the caring:eek: I am sure one of our wise ones will be along with advice for you soon, please keep posting.Best Wishes-Chris
 

JPG1

Account Closed
Jul 16, 2008
3,396
My mum had an assessment when she was discharged from hoispital last week which resulted in her needs being assessed as 'no care or limited care required', which I think is wrong. I am challenging this but wondered if I am wasting my time.

Thank you - Jackie
Hello Jackie, and no, you're not wrong and no, you're not wasting your time.

At least the NHS hospital did an assessment before discharge from hospital. That's a step forward!

Do you know whether it was just a Checklist? Or was it a full assessment? Were you involved in that, i.e. allowed to have full input so that you could tell exactly as you see it? Were you given a copy of the paperwork connected with the assessment?

That should have included a leaflet explaining the whole process before the assessment was done, plus a copy of the decision made and full reasons given to you.

If that didn't happen, you should most definitely challenge the way they have conducted things, i.e. the process they failed to follow correctly. And you can ask them to start again, from the beginning, with you fully involved and contributing as much as you know to the whole assessment.

If it did happen, and if you were fully involved all the way through, but if you are still unwilling to accept the outcome of 'whichever' assessment was carried out, you still have the right to challenge the outcome. I'm glad you're doing that already. You can't challenge it without having a copy of the full documentation involved, and that may include a copy of the hospital notes/records for the duration of the stay in hospital.

You must have an explanation of whichever document says that your Mum requires 'no care' or 'limited care'. What would happen to your Mum if your Dad wasn't there to care for her? If he's providing most of the care that she needs, the NHS must take on board that he may also need care soon too.

Achieving NHS CHC is not dependent on a diagnosis of anything. Nor is it dependent on whether someone needs care in a care home. Nor is it dependent on the provision of Professional Nurses to carry out the care required. It's dependent on a full, accurate assessment of 'needs' - needs that come about because of someone's health, or rather their illness, disability that results in a need for healthcare.

There are a few TPers who have achieved fully-funded NHS CHC for their relative in their own homes too. And more than a few who have achieved fully-funded NHS CHC for their relative with dementia who is now residing in a care home.

As for the money side of your present situation: if your Mum has less between c£14,500 and £23,500 in her own name, she is entitled to support from the SS. If she has less than c £14,500 her care needs should be fully-funded by the SS at the moment.

Sorry to hear of the struggles you are having to go through. Keep posting - there are many TPers who know a fair bit about the CHC process.
 

Jackie3

Registered User
Nov 27, 2012
14
Oldham
Hello Jackie, I just wanted to acknowledge your post and welcome you to Talking Point, much support, understanding and help here day or night-anytime, I am so sorry your dad is so stressed with care funding, hard enough for you all getting to grips with this unforgiving illness but worries about cost must be so upsetting especially as mum needs extra help now, I am sorry but I don't have any experience of your problem -yet! my mum in law has carers in 3 times a day-she has vascular dementia and the care package is funded, my mum has Alzheimer's and has been "written off" by social services as not needing help:eek: I guess it may be because I "look" after my mum although do not live with her, could the same thing apply with your dad? as he is looking after her and they may think that is enough?and to supply more help as she has got someone "caring" for her will cost them money when they already have dad doing most of the caring:eek: I am sure one of our wise ones will be along with advice for you soon, please keep posting.Best Wishes-Chris
Thank you Chris. I am hoping that someone has some experience of this NHS continuing care system. They have a checklist of 11 questions and you can score A, B or C. A highest and C lowest. It takes about 5 minutes to do - quicker than a TV magazine quiz! A virtual stranger then decides which category the patient comes under based on their very limited contact with the patient. My mum got mosdtly Cs. It's laughable:D but so serious too:mad:
 

crazyfish

Registered User
Oct 12, 2012
288
I have just registered although my mum has had Alzheimer's for at least 5 years if not longer.

Her deterioration is getting rapid after a fall 18 months ago which resulted in 2 broken hips and a broken wrist. She is now wheelchair bound and my dad is her main carer with the help of carers in the mornings and occasional respite sessions. She is self-funding at the moment but the money is rapidly running out. After she had a recent stint in hospital with e-coli, septacemia and urine infection my dad is finding it increasingly difficult to cope with all the care that she requires but the cost of bringing in more care is also stressing him out. So, I was wondering if anyone has had NHS continuing care agreed for dementia and the related problems associated with it. My mum had an assessment when she was discharged from hoispital last week which resulted in her needs being assessed as 'no care or limited care required', which I think is wrong. I am challenging this but wondered if I am wasting my time.

Thank you - Jackie
HI Jackie,
sounds like your having a tough time .
Hope I can answer some of your questions but the info you have given is a bit limited.
You have said your mum was assessed last week.
Was this a full CHC assessment or just the checklist?
If it was the full assessment then you should have been fully involved.
Was the assessment carried out by a MDT team.
Did they go through each of the 12 domains with you and what scores did your mum get in each one.
Once the assessment was concluded and as you have said your mother was refused did they provide you with a copy?
Of course you can go down the appeal route but make sure that this was the full assessment.
To appeal you need to get up to speed with the DOH CHC Framework and Practice guidance.
http://www.dh.gov.uk/health/2012/11/continuing-healthcare-revisions/
This is the latest revised edition.
It's a long read but the best route to go down.
All their rules and procedures must be adhered to as the NHS made them up so they should abide by them.
On many occasions they don't follow these guidelines and this is where you can win.
Don't take too much notice of the SS at the present time.
As healthcare has nothing to do with them.
Do not give them any financial details.
Do not agree to as means test.
Do not sign ANYTHING.
Get everything in writing from both the NHS & SS.
Try and get hold of your mums medical records you will need them.
Be prepared for a long struggle but remember you can win if you are willing to hang on in there.
Read all you can on this and other forums on CHC and keep asking questions.
There are plenty of people who will be willing to help and are going through the same struggle as you are.
If you need any further info you can PM me.
MICK
 

JoshuaTree

Registered User
Jan 2, 2010
496
Surrey
Hi there.
We just won full CHC funding for my Mum.
It's not just as simple as a quick checlist and then a decision I'm afraid.
Crazyfish has pointed out a few more details.
CHC funding team will come out and assess in a lot more detail, it's rather a minefield
and you and your dad definately need to be fully involved incl any carers to answer all
questions.
They score in a strange way and need priorities in some domains, severe in others etc.

It is worth it as you dont know unless you try. If you win always remember that its not actually continuing as you can qualify and then not qualify depending on the changing needs.
 

Jackie3

Registered User
Nov 27, 2012
14
Oldham
Hello Jackie, and no, you're not wrong and no, you're not wasting your time.

At least the NHS hospital did an assessment before discharge from hospital. That's a step forward!

Do you know whether it was just a Checklist? Or was it a full assessment? Were you involved in that, i.e. allowed to have full input so that you could tell exactly as you see it? Were you given a copy of the paperwork connected with the assessment?

That should have included a leaflet explaining the whole process before the assessment was done, plus a copy of the decision made and full reasons given to you.

If that didn't happen, you should most definitely challenge the way they have conducted things, i.e. the process they failed to follow correctly. And you can ask them to start again, from the beginning, with you fully involved and contributing as much as you know to the whole assessment.

If it did happen, and if you were fully involved all the way through, but if you are still unwilling to accept the outcome of 'whichever' assessment was carried out, you still have the right to challenge the outcome. I'm glad you're doing that already. You can't challenge it without having a copy of the full documentation involved, and that may include a copy of the hospital notes/records for the duration of the stay in hospital.

You must have an explanation of whichever document says that your Mum requires 'no care' or 'limited care'. What would happen to your Mum if your Dad wasn't there to care for her? If he's providing most of the care that she needs, the NHS must take on board that he may also need care soon too.

Achieving NHS CHC is not dependent on a diagnosis of anything. Nor is it dependent on whether someone needs care in a care home. Nor is it dependent on the provision of Professional Nurses to carry out the care required. It's dependent on a full, accurate assessment of 'needs' - needs that come about because of someone's health, or rather their illness, disability that results in a need for healthcare.

There are a few TPers who have achieved fully-funded NHS CHC for their relative in their own homes too. And more than a few who have achieved fully-funded NHS CHC for their relative with dementia who is now residing in a care home.

As for the money side of your present situation: if your Mum has less between c£14,500 and £23,500 in her own name, she is entitled to support from the SS. If she has less than c £14,500 her care needs should be fully-funded by the SS at the moment.

Sorry to hear of the struggles you are having to go through. Keep posting - there are many TPers who know a fair bit about the CHC process.
Thank you so much for this advice. The assessment was just the checklist. Done without her consent (cos she can't give it) and without the family involved. We did'nt see any paperwork and have not been given a copy although I have asked for one. We were just told on discharge from the hospital that she didn't qualify for CHC in a matter of fact way. I asked why not and to see the assessment. The nurse quoted a bit of it but wouldn't show me. I did get a bit vocal and they said it could be done again but I am now waiting to see if and when. They said they would send me the completed assessment in the post so I await that. I got hold of a blank one on the internet so know what they should and should not have done. I will pursue if I think it is worth it and it sounds like it is:)
 

JPG1

Account Closed
Jul 16, 2008
3,396
If they are planning to carry out a full assessment for CHC, you must be involved in it.

Not waiting for a copy of it to be sent to you afterwards.

Age UK factsheet: http://www.ageuk.org.uk/Documents/E...and_NHS-funded_nursing_care_fcs.pdf?dtrk=true

The Checklist: http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/documents/digitalasset/dh_103328.pdf

The DST (Decision Support Tool) completed after a full assessment for CHC: http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/documents/digitalasset/dh_103329.pdf

The full National Framework for CHC: http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/documents/digitalasset/dh_103161.pdf

You'll need more than a mug of hot chocolate once you've read that lot!
 

crazyfish

Registered User
Oct 12, 2012
288
Thank you Chris. I am hoping that someone has some experience of this NHS continuing care system. They have a checklist of 11 questions and you can score A, B or C. A highest and C lowest. It takes about 5 minutes to do - quicker than a TV magazine quiz! A virtual stranger then decides which category the patient comes under based on their very limited contact with the patient. My mum got mosdtly Cs. It's laughable:D but so serious too:mad:
HI Jackie,
just read this post.
This is just the check list for CHC.
I agree it's laughable and most people are told there is no need so therefore no CHC assessment.
Tell your PCT you don't agree and demand that a FULL CHC assessment is carried out by a MDT.
IT'S YOUR MUMS RIGHT.
Don't take no for an answer.
Don't be bullied or pushed around by either the NHS or SS.
Remember the Law states that care by the NHS is FREE at the point of need if someone is ill or disabled for every British citizen and is not dependent on the patients financial circumstances.
This is a core principal of the NHS and has been since the 1946/8 act
MICK
 

NeverGiveUp

Registered User
May 17, 2011
1,035
I wonder if you could help me with some info, when mum has been in hospital the only contact re care etc prior to discharge has been hospital SW, employee of county council, who seems just interested in how much money we have. Who carries out assessment for CHC? The only non Sw I have seen are discharge meeting with a lot of people from hospital who all seem to have discussed things prior to our arrival, a dementia team who I could describe in 3 words - wet, paper & bag, then after discharge, a formal discharge meeting which seemed to be SW led.

Where in all of this would CHC have been discussed/assessed?
 

JoshuaTree

Registered User
Jan 2, 2010
496
Surrey
I really dont know.
The manager of the carehome Mum was in took it upon herself to apply on our behalf
but with our imput.
The forms she filled in were quite intense and requires a lot of detail, including Dr's notes and consultants results.
She did this all and saved us alot of confusion...Until the day the assessors came!
 

crazyfish

Registered User
Oct 12, 2012
288
I wonder if you could help me with some info, when mum has been in hospital the only contact re care etc prior to discharge has been hospital SW, employee of county council, who seems just interested in how much money we have. Who carries out assessment for CHC? The only non Sw I have seen are discharge meeting with a lot of people from hospital who all seem to have discussed things prior to our arrival, a dementia team who I could describe in 3 words - wet, paper & bag, then after discharge, a formal discharge meeting which seemed to be SW led.

Where in all of this would CHC have been discussed/assessed?
HI Never give up,
you don't say where your mum is at present?
If she is still in hospital ask to speak to the leader of the CHC team at the hospital or the discharge manager.
Either one should be able to help you.
Before discharge depending on your mums condition a full CHC assessment should be carried out with your full participation.
If your mum is at home or in a home get the GP involved or as suggested the home manager.
Don't take any notice of the SW care is none of their business .
Do not give them any financial details or sign ANYTHING.
http://www.dh.gov.uk/health/2012/11/continuing-healthcare-revisions/
Check out the revised national framework on this link and the practice guidance.
Lots to read but don't be put off.
If the NHS havn't carried out the assessment in line with guidelines then they have done it wrong and you can demand it be redone in the correct manner.
Take everything said by the NHS & SW with a pinch of salt and get everything in writing.
If you need any more info get back on line or PM me.
MICK
 

JPG1

Account Closed
Jul 16, 2008
3,396
NeverGiveUp,

It doesn’t matter where someone is at the time – ‘someone’ could be in their own home, or in hospital, or in a care home – the procedure for CHC is more or less the same.

Consideration must be given to CHC before someone moves into a care home, or before hospital discharge if it appears that they may need further care in the community somewhere, or if/when at any point their health changes/deteriorates while they are in a care home.

All care home managers have a duty to set the wheels in motion if they consider that someone may be eligible.

Anyone can request an assessment for CHC for themselves or for their relative. That includes you. :)

The main point of contact is the CHC Coordinator/Lead/Team at the PCT (Primary Care Trust – but that will change in April 2013 when PCTs cease to exist) for the area where the person resides. You can Google for “name of your PCT” + “Continuing Healthcare Team”. Or you can ask the hospital for the contact details. (The CHC Team is not always based in the hospital.)

The person(s) who carries out the Checklist, and/or the full assessment via a Multi-disciplinary team (ending with the DST being compiled) must have been trained to do so and must understand the whole process, and must involve you and explain the whole process to you too.

Hope that helps.
 

nelliewops

Registered User
Oct 8, 2011
87
Wiltshire
Consideration must be given to CHC before someone moves into a care home, or before hospital discharge if it appears that they may need further care in the community somewhere, or if/when at any point their health changes/deteriorates while they are in a care home.

.
Very sorry to hear about your situation Jackie......sounds like you and your family are going through an absolutely awful time :(

I just wanted to pick up on the above point - hope you don't mind - my 84 year old dad was admitted to hospital in July after a fall. In the ambulance on his way to hospital he suffered a seizure. At the time he was the sole carer for my mum (82) who as had Alzheimer's for around seven years and was becoming increasingly frail and confused himself, having already suffered several mini strokes and UTIs. Unfortunately living an hour and a half away (and being an only child) meant I could be of limited help, although DH and I did travel down several times a week to help out where we could.

My dad was in hospital for just over a week (no bones broken thankfully, just severe bruising/cuts to his face etc) and during his stay he became increasingly agitated and confused, but we put this down to being separated from mum and the very bad bump on the head.

When he was discharged the hospital advised he couldn't go back home to care for mum and as we already realised this was out of the question and had tried a care package unsuccessfully previously, we found a respite place (self-funded) in a care home for him - mum was already in another home by this time - till we could make a decision what to do regarding selling their house etc.

At no point did the hospital mention anything about NHS continuing care and we were not really aware of its existence.......We firmly believe he was already exhibiting signs of dementia and understand the mini strokes and mystery 'seizure' (which the hospital staff never fully explained to us) could be indications of Vascular Dementia. We are now awaiting an assessment for dementia - not saying he would qualify, but should an assessment for NHS continuing care have been carried out before he was discharged?

Apologies for hijacking Jackie's thread, just very interested in the subject matter and the outcome here......

Hope you get this resolved very soon Jackie and sending hugs your way xxx
 

hopeful56

Registered User
Jun 17, 2009
265
Midlands
Hi Jackie

Can I just ask why she is currently self-funding? Does she have more than £23K in her own right? Any money in joint accounts is shared equally for the purposes of financial assessment and any property is disregarded whilst a spouse/partner lives there.

It sounds as though the checklist was inaccurately assessed. If she is unable to give permission that calls into question her communication at the very least. And she is clearly at risk of falls and her mobility is clearly impaired if she is wheelchair bound. It is ludicrous for them to say she has no needs - are they saying that she could live independently, on her own! Bonkers!!

She should definitely have a full CHC assessment. It would be well worth your time to print off the assessment tool (Decision Support Tool) and complete it yourselves, and collect as much evidence as you can to back up your scoring.

Good luck,

JJ
 

JPG1

Account Closed
Jul 16, 2008
3,396
At no point did the hospital mention anything about NHS continuing care and we were not really aware of its existence.......We firmly believe he was already exhibiting signs of dementia and understand the mini strokes and mystery 'seizure' (which the hospital staff never fully explained to us) could be indications of Vascular Dementia. We are now awaiting an assessment for dementia - not saying he would qualify, but should an assessment for NHS continuing care have been carried out before he was discharged?

Apologies for hijacking Jackie's thread, just very interested in the subject matter and the outcome here......
Hi nelliewops, I don't think Jackie will mind you sharing the thread with her.

You said you live miles away, so I've just googled Wilts which may or may not be where your parents live, but it doesn't matter - all hospitals have their own discharge policy, so you can easily find the appropriate one for the hospital you were dealing with.

Here's the link to Salisbury :
http://www.icid.salisbury.nhs.uk/ClinicalManagement/Discharge/Pages/EffectiveDischargePolicy.aspx

Para 2.2.3: Patients requiring ongoing health and social care needs:

Social Services:

Where indicated referrals to Social Services should be made as soon as possible using Fax 1.

This may be before a provisional date for discharge has been identified. Social Services must respond to referrals within 48 hours of receipt.

As soon as a discharge date has been agreed by the Multi Disciplinary Team, this should be passed to Social Care using Fax 2.

A Fax 2 must be accompanied by an NHS Continuing Healthcare (CHC) needs checklist.

If the discharge date changes due to a change in the patient’s situation this should be communicated to Social Services using Fax 3.

When the patient is once more fit to be discharged another Fax 2 should be sent to Social Services (see appendix 3a, appendix 3b, appendix 3c and appendix 3d).


That is the standard procedure whenever a person is to be discharged from hospital and is considered to be in need of ongoing care.

Social Services are not allowed to accept ongoing responsibility for someone if they (the SS) are of the opinion that the person has health needs that are beyond the remit of the SS to provide care for. The SS should refer the person back to the PCT/hospital discharge team for further assessment for NHS Continuing Healthcare which would be funded by the NHS if the person is found eligible.

Yes, an assessment for CHC should have been carried out, as you can see from the hospital discharge policy. In fact, that assessment should have been carried out for both of your parents. With you fully involved. It's not only for people moving from hospital to a care home - the same applies to people moving from their own home into a care home.

Eligibility for CHC is not decided based on any diagnosis. It's the overall needs that have to be assessed - not a medical condition, as such.

The fact that so many people have never even heard of NHS CHC is because information about its existence has been kept fairly closely guarded.

Age UK factsheet is brilliant: http://www.ageuk.org.uk/Documents/E...and_NHS-funded_nursing_care_fcs.pdf?dtrk=true

Hope that helps.
 

crazyfish

Registered User
Oct 12, 2012
288
Very sorry to hear about your situation Jackie......sounds like you and your family are going through an absolutely awful time :(

I just wanted to pick up on the above point - hope you don't mind - my 84 year old dad was admitted to hospital in July after a fall. In the ambulance on his way to hospital he suffered a seizure. At the time he was the sole carer for my mum (82) who as had Alzheimer's for around seven years and was becoming increasingly frail and confused himself, having already suffered several mini strokes and UTIs. Unfortunately living an hour and a half away (and being an only child) meant I could be of limited help, although DH and I did travel down several times a week to help out where we could.

My dad was in hospital for just over a week (no bones broken thankfully, just severe bruising/cuts to his face etc) and during his stay he became increasingly agitated and confused, but we put this down to being separated from mum and the very bad bump on the head.

When he was discharged the hospital advised he couldn't go back home to care for mum and as we already realised this was out of the question and had tried a care package unsuccessfully previously, we found a respite place (self-funded) in a care home for him - mum was already in another home by this time - till we could make a decision what to do regarding selling their house etc.

At no point did the hospital mention anything about NHS continuing care and we were not really aware of its existence.......We firmly believe he was already exhibiting signs of dementia and understand the mini strokes and mystery 'seizure' (which the hospital staff never fully explained to us) could be indications of Vascular Dementia. We are now awaiting an assessment for dementia - not saying he would qualify, but should an assessment for NHS continuing care have been carried out before he was discharged?

Apologies for hijacking Jackie's thread, just very interested in the subject matter and the outcome here......

Hope you get this resolved very soon Jackie and sending hugs your way xxx
HI Nelliewops,
the information JPG1 has given you is totally correct.
The NHS have put in a lot of rules called the CHC framework and Practice guidance.
These are guidelines to see if people qualify for CHC .

It may seem very complicated and this has been made deliberately so by the DOH.
Many people arn't prepared to wade through the pages of NHS gobbledygook and give up.
But as the NHS have made up these rules they must stick to them and as JPG1 has pointed out certain procedures MUST be carried out in the correct order.
Make sure all your dealings with the NHS & SS are in writing .
Checkout the revised CHC framework & practice guidance .
http://www.dh.gov.uk/health/2012/11/continuing-healthcare-revisions/
MICK
 

nelliewops

Registered User
Oct 8, 2011
87
Wiltshire
Thanks JPG1 and crazyfish :)

That's very interesting and helpful........and hugely appreciated! We are in Wiltshire but my parents live in Hampshire so I will look up the discharge policy for the relevant hospital/health authority.

There was definitely no mention of any assessments being carried out on either of my parents and in fact when I more recently became aware of the existence of NHS continuing care and mentioned it to my mum's consultant in old age psychiatry, she said mum would not qualify. There's no doubt mum is not likely to meet the criteria as despite having Alzheimer's for seven years, her symptoms are still fairly mild and she is neither immobile nor frail.

My dad, on the other hand, whilst having not been diagnosed with dementia at the time of his hospitalisation was in a far worse state at the time of discharge. We did have a lengthy chat with the ward sister (or whatever they are known as these days :confused:) a couple of days prior to this and she made no reference to any pre-discharge procedures involving assessing his needs......

His condition has continued to worsen and I have in the last hour had a call to say that his assessment for dementia (today) went pretty badly and it has been confirmed that he has Vascular dementia :( I have also been advised that based upon his condition and needs today he should qualify for the higher rate of Attendance Allowance - which is some consolation........:(