How bad does someone have to be to qualify for continuing care?

[curlysue]

My mum has alzheimers and broke her hip on 7th December. She has been in hospital since then. We have been told she has to go into a care home and this will have to be paid for by the sale of her house. the only problem is is that this is the only home of my brother, who is 51. He has been mum's only carer for the last 5 years and has paid all the bills etc. He has always lived with my mum and it looks like he will be made homeless in order to pay for the care home.

At the moment he is disputing the assessment of continuing care, he says that as long as he disputes this mum will be in hospital and the house will not be sold. My mum can no longer walk, doubly incontinent, does not recognise anyone, cannot feed her self, cannot communicate at all. How much worse does she have to be to get continuing care?

Can anyone give any advice. thanks

 

[jenniferpa]

Goodness knows.

However, you do have another avenue of appeal should she not get continuing care. The local authority do have the discretion to not to force the sale of a house if there is a long term carer living in it. This seems to happen more in a situation where they would be liable for housing that person should the house be sold. However, even then they may place a lien against the property. It isn't clear cut I'm afraid but unless you ask about the possibility, they're unlikely even to consider it.

This is the chapter and verse from CRAG

Discretion to disregard property

7.007

Where the LA considers it reasonable to do so, they can disregard the value of premises not covered in paragraphs 7.002-006 in which a third party continues to live. LAs will have to
balance the use of this discretion with the need to ensure that residents with assets are not
maintained at public expense. It may be reasonable, for example, to disregard a dwelling's
value where it is the sole residence of someone who has given up their own home in order to
care for the resident, or someone who is an elderly companion of the resident particularly if they
have given up their own home. Schedule 4 para.18

7.008

Where the LA has decided to disregard the value of a property, it is left to the LA to decide if and when to review that decision. It would be reasonable, for example, where the LA has been
ignoring the value of a property because a long term carer was living there, for the LA to begin
taking account of the value of the property when the carer dies or moves out.

 

[Amy]

Hiya,
Your brother must take advice on the house...if it is his home, thenunlikely that a sale can be forced...phone AS helpline and ask advice.

How bad? From the things that you have said, the response would be that your mum is not ill...just needs personal care!!! Leave her in bed so that she gets bed sores that need dressing, then you may get somewhere. The assessment looks at nursing care requirements. She is past the stage of wandering, or being aggressive, she is medically stable....the fact that she is totally dependent is irrelevant.

Sorry if i sound bitter...dont intend to be 'off' with you...the system sucks.

Love Helen

 

[Clive]

Hi Curlysue

If you haven’t found it already the Check List and the Decision Support tool that are used to assess your mum can be downloaded from
http://www.dh.gov.uk/en/SocialCare/Deliveringadultsocialcare/Continuingcare/DH_073912



Most people will not be rated “Priority” in any one health domain and will need to pick up points in most health domains. So it is very important to read the health summary that is being used at the assessment to determine if your mum qualifies. Make sure EVERY health concern has been recorded. (Write them down beforehand and especially note all aspects of behaviour relevant to health and safety). Many reports are not complete and miss important health concerns.


Remember you need to prove (as far as possible) that your mum had COMPLEX health problems COVERING MANY health domains. You need to show that she had MULTIPLE NEEDS and is UNSTABLE and UNPREDICTABLE and CHALENGING requiring REGULAR SUPPORT.





Also, who is saying that your mum has to go into a Care Home? If it is essential then this is a good argument for CHC. (and however horrible it may be… bed blocking is a good negotiating position). If it is not essential you do have the choice of moving mum back to her own home.



Whilst it is outside my expertise I understood that Social Services had to offer you the right to put off selling the house until the owner dies. It might not be ideal… but it would give you time to continue applying for CHC as your mum’s health continues to deteriorate.

Best of luck.

Clive.

PS. Do book an appointment with your MP today. (You can always cancel if you don’t need it).
.

 

[Clive]

Hi Curlysue

When I wanted to get NHS Funded Continuing Health Care for my mum I learnt all I could about how the system worked AND got my MP involved.

It was not simple, or a magic bullet but it helped to achieve my aim.

It is essential to actually book an appointment and go and look him in the eye. Also you must continue to go back to check on what has been done, and to keep asking for assistance.

The advantage in adding the MP to your list of helpers is that he can contact the man at the TOP, whilst you are negotiating with the people at the bottom.

The very best of luck.

Clive

 

[Marianne]

Hi Curlysue
From what you have said about your mum she should qualify for CHC, as Clive said while your mum is in hospital you are in the best bargaining position. Has she had a multi-disciplinary assessment carried out for her health needs yet. You mention Social Services are wanting the house to be sold for payment, have they already put a charge on the property. You can check this with the land registry which I would do right away.

If the only assessment that has been done so far is by Social Services then write to the PCT and request an assessment of your mum's health needs with a view to receiving CHC. Until this is done Social Services have no business advising you to look for care.

When an assessment is carried out correctly as should be done before a patient is discharged into care, make sure you and your family are invited to the meeting and in the meantime read the National Framework and make yourself familiar with the DS-Tool which Clive included above.

If they refuse you CHC you have the right to appeal which they should make you aware of, while you are appealing they pay for care until you reach an Independent Review Panel.

I was awarded fully funded CHC for my dad who suffered Vascular Dementia and Ca.Prostate but I only became aware of CHC after my dad had been in care 2 years. While in hospital initially he was only assessed by SS and I was told he needed care and he would have to pay. There is a lot of information on the internet regarding CHC, but if you view the tool that they use this should allow you to prepare your own case. Good Luck.

 

[Jackie]

Hi

Can I ask what part of the country your in?

 

[noelphobic]

My mum can no longer walk, doubly incontinent, does not recognise anyone, cannot feed her self, cannot communicate at all. How much worse does she have to be to get continuing care?

Can anyone give any advice. thanks

You could be describing my mum there, and she does not get continuing care either unfortunately. However, her house has not been sold although the local authority have a charge on it and it will be sold after her death and the LA repaid. The other advantage of this, in our case, is that the LA pays the nursing home fees at a lower level than is paid by 'private' patients.

Obviously the fact that your brother lives in her house gives you an added incentive to apply for continuing care.

 

[slotnicki]

I'm currently awaiting a decision on Continuing Care for my mum and realise that we have never seen a copy of the assessment and were never consulted about it. I was talking to the PCT today and found out that the hospital hadn't included enough info for them to decide, which makes me think that it probably wasn't well put together. Should I have received a copy?

 

[jenniferpa]

I do not think you have an absolute right to have a copy of the assessment before the final decision is made. Nor do you have an absolute right to attend an assessment. After is a different story.

These are the relevant FAQ from the SH website

2.18 Can relatives/representatives be invited to attend Nursing-care / NHS Continuing Healthcare assessments?
Answer
Yes, where appropriate and with the permission of the person being assessed (where the person lacks capacity to consent then a best interests decision will have to be made whether or not to invite them - ref. Mental Capacity Act).

It may help the family/carer/representative understand the process, and decision, if they were engaged in the assessment.

The NHS-funded Nursing Care Practice Guide includes

“ 29. This assessment of registered nursing needs should help the individual, their carer and/or representative understand the extent and nature of the nursing care needed to meet their care needs and find the most appropriate environment in which to meet those needs.”

The National Framework states that assessment, and consideration of eligibility for, and delivery of, NHS Continuing Health Care and NHS Funded Nursing Care should be organised so that the person who is undergoing an assessment and their family and/or carers understand the process and receive advice and information to enable them to participate in informed decision-making about their future care (para 32).

and

3.6 Should the completed DST be shared with patient/representative before it goes to a panel?
Answer
It is a requirement that the individual being assessed is notified, in writing, of the final decisions. PCTs may find it helpful to share the DST with the individual and their carers and family after the decision is made. The DST asks MDTs to record whether the individual, main carer or advocate was present during the MDT assessment of eligibility, if they were not invited or declined to attend, and whether they have seen and agreed to the content of the completed DST. Arrangements should always reflect the principles in the National Framework that individuals and their representatives should be supported to be part of person centred, informed decision-making (paras 30 and 32).

 

[Margaret W]

What a bloody nightmare and how wrong it all is. This is not what I pay my taxes for. I'll never get any benefit from them, neither my mum nor my dad got any benefit from them, and now it seems neither will Curlysue either. Wish I'd been on the doleor the last 15 years. Claim every penny that you can, I want to know that the thousands of pounds I have paid in are going to somebody who needs them.

Margaret

 

[BeckyJan]

CurlySue

If you have not already done it can I suggest you download the Alz. Society document 'When does the NHS pay for care' and their update of October 2007. I have printed off the 40 odd pages and have found it useful in making my appeal for cont.care.

Slotniki I asked for a photocopy from the clerk in the Assess Unit where the paperwork was done (very unprofessionally in our case too). I also obtained the address of the Cont.Care office from that clerk. The NH Manager gave me a contact number too.

Jan

 

[Clive]

Hi Slotnicki

I think you should see a copy of the summary. I was sent a copy and asked to agree it. (though my case was slightly different in that mum had already been placed in a Home by me).




When the Department of Health tried to get all the PCTs to sing from the same hymn sheet they produced the “Decision-Support Tool for NHS Continuing Healthcare (dated 20 September 2007)” and instructed the PCTs to use it. (I presume you have read it on the web).


The last but one paragraph on the first page states

“Note: We have tried to make this document as clear and accessible as possible for people having assessments for NHS Continuing Healthcare, and their families and carers. ……. The person using the tool should make sure that individuals, and carers or representatives (where consent is given) understand and agree to what has been written. If necessary, advocacy may be needed”.


I would argue that this means that the Government intend the information collected with the Decision Support Tool will be agreed by the patient (or their Representative) before a decision is reached.


Knowing, from experience, that important health issues were missed completely from mum’s summary I would urge anyone whose loved one is having the assessment to make sure they see what information has been collected before a decision is made.



Clive

 

[Tarika]

Continuing health care

Apologies to Curly Sue I don't want to jump your post.
To Slotnicki: my mum is under Hammersmith& Fulham PCT. The continuing health care team e-mailed me a copy of her assessment for feedback before taking it to panel and also required me to sign a form giving consent to reports from various professionals. It was very helpful as they were using reports from the private physio I'd paid for. I objected to this as it wasn't NHS & they agreed. I also has several conversations with the nurse in charge of the assessment. It took quite a while for them to get all the reports and they visited mum in the NH about 3 times. very thorough- and she got it.
It might be worth contacting the Continuing care team at stamford brook and speaking to the manager there.
Love Tarika

 

[Marianne]

My dad was discharged from hospital in Jan'05 and the only assessment carried out was done by Social Services, who informed me that my dad required EMI Nursing Care. The Social Worker asked me if my dad had over £20,000 which I confirmed he had, he said he will have to pay his own care home fees.

At the time I wasn't aware of CHC,and so went along with the social worker, which is what they want you to do. It was after watching a Panorama programme in 2006 that I was alerted to the fact that my dad should have received CHC and the assessment carried out before he was discharged from hospital was unlawful.

I wrote to the PCT and requested an assessment of my dad's health needs which was the first assessment from him going into care. But this assessment was doomed from the start as the care home manager was allowed to sit in at the multi disciplinary meeting along with PCT Assessor, SS,CPN and me. I soon realised the manager of the home along with the PCT were lying, this assessment never went to panel. I contacted the Healthcare Commission and they wrote to the PCT and informed me that he had advised the PCT to carry out an assessment with a health needs approach.

My dad was rushed into hospital in June'07 and I was invited to a Multi-disciplinary meeting and my dad was granted CHC, but that was from June onwards. I requested a Retrospective Review which was held in Nov'07 I was then granted CHC funding from the day my dad went into care.

I was given all my dad's medical notes, care home notes, MAR charts, by the PCT nursing assessor who worked with me preparing a case for panel. I wasn't allowed to attend the panel meeting but she presented the case I had prepared, before she went to panel she called at my home and went through everything she had put together regarding the DST. My dad well and truly qualified for CHC as others should on this board, but it isn't easy, I don't mean it is difficult to understand, it is hard trying to get the Authorities to comply to their own rules and play fair.

This is a website featuring some of the people who have featured on Panorama and other TV programmes regarding CHC. www.continuingcarecampaign.co.uk

 

[Clive]

It is probably worth stating how the final decision should be made.

You are awarded CHC if you have a high enough “statement of need” score over all the health “Domains”. Few will score a “Priority” need in any health domain and will scrape through with a “Severe” and many “High” or “Moderate” need domains.

The assessor cannot score halfway between statements of need in any one domain; you have to be moved to the statement of need above. This means that adding just a little extra health information to what is already known in any health domain could move you up from say “moderate” to “high” in one domain, and so moving you to success.

In other words, you must make sure every bit of health information counts, and you are the only person who has an interest in making sure it all has been recorded.


Clive

 

[Marianne]

In other words, you must make sure every bit of health information counts, and you are the only person who has an interest in making sure it all has been recorded.[/B]
Clive very true and the only way you can make sure that a person suffering with Dementia is assessed correctly is by being involved from the start. It has been known that a person has been sedated before being assessed making that person very manageable and not showing any great needs. Also when you have a care home manager saying she can manage his needs. I have personal experience of these tricks. But as it states in the National Framework "well managed needs are still needs.

If a person is in hospital then make sure a correct assessment has been carried out. If CHC is refused the patient should be assessed again for the RNCC. If you disagree with the assessment you can request an Independent Review and care must be funded until a decision is reached by the IRP.