What happens after a positive Continuing Healthcare funding recommendation?

We have just secured funding for our mum but now face the problem of which homes. To be close to us, vital when we visit every day, may mean out of mum's area. We suspect CHC trying to place her in county and we say it's in her best interests to be local to us. Do we have a case worth fighting? Thanks

From Joan: Thanks to your excellent book I have got this far. DST assessors awarded 1 priority, 1 severe and 4 high. But it is not over. The CCG have not yet made a decision, though they are out of time according to the National Framework Guidelines. I fear they are back pedaling. It is a scandal.

My relative was awarded CHC funding in 2014 - the latest "review" broke virtually every guideline possible - he has still retained funding but it is obvious that the aim is to remove this as soon as they can make up enough excuses to do so - he is so profoundly disabled it will just take them more time to find enough reason to remove funding. The Assessor downgraded his communication to "moderate" after the event although we all agreed severe at the DST and with every professional member at the MDT saying he is severe - he is diagnosed minimally conscious and is unable to communicate by ANY means and so anything else is patently ridiculous. She also said his mobility is only moderate -he is quadriplegic, has NO voluntary movement below the neck and requires hoisting for everything. He is also PEG fed, has epilepsy and profoundly brain damaged - and to top it all his condition is all due to medical negligence by the NHS to boot! The assessor told us that completely immobile does not mean completely unable to move but to BE MOVED. I said this was interpreting the guidelines which is not allowed and in any case was ridiculous as noone cannot be moved - beds have wheels.

We requested a review - sent more backup from professionals and they have ignored the lot.

I have at least 10 points on which they broke guidelines. Should I still raise a complaint about the DST and ask for IRP - even though he has funding agreed at the moment ? Is the purpose of an IRP only for cases where funding is refused? I am worried they will start from the lowered position of assessment next time and by the time of the next review he will be able to run a marathon and present the News on TV according to their assessor.

Have won NHS Continuing Healthcare (CHC) for my friend who has Alzheimer's with complex needs , including severe fluent expressive aphasia. CHC organised a firm to come in and start a care plan , initially for afternoons only. A young girl arrived yesterday, who has no working experience of Dementia patients! Looked up the firm online to discover it was only started last year and has no CQC status yet. Googled the firm and cross checked a couple of the reviews names on Facebook only to discover some have been posted by staff working there! Surely this isn't acceptable? I returned to my friends house early to find the 'carer' laid out watching [TV]. I have lodged a complaint. Am I expecting too much?

My father receives NHS Continuing Healthcare (CHC). He was assessed positive 2 years ago and subsequent reviews confirmed eligibility. However, in his most recent review, six weeks ago, the assessor has informed us that we will have to go through the whole process once again (they tried to move him a year and a half ago because of the cost of the nursing home, but he deteriorated very rapidly and he was finally allowed to stay put and CHC was confirmed!!). We have never received any written confirmation (apart from for the last but one review) of eligibility or any information about how his needs meet the 4 key indicator needs framework after the original Decision Support Tool (DST). My mother has been phoning the CCG for the last 6 weeks for this information and the DST has been scheduled for 7 November. They said they would send the information about how they think his needs have changed since the last DST but we have still not received the information. They are also challenging my mother's rights to deal with the process on behalf of my father (and basically access these notes) and asked to see proof of Power of Attorney. She has financial but not welfare power of attorney. My father was diagnosed with Parkinson's 27 years ago. My mother cared for him for 25 of those 27 years and he has only been in a nursing home for the past 2 years. She visits him every other day. Can they reasonably refuse to show us these notes ahead of the DST "review"?

My mum has severe dementia, and qualifies for Continuing Healthcare (CHC) which she has been receiving for a couple of years now. Her care has been covered through home visits (4 x a day). My father lives at home with her and prepares food etc. but he is elderly and not in good health either. Mum is completely immobile, unable to speak, feed herself, doubly incontinent, etc. If she were to have to move in to a nursing home, I have three questions:

1) Would the CHC cover all costs, or would we pay the 'hotel' costs (her savings / assets are in excess of the 23K); 2) Could we chose the home, or would it have to be one that is specified for us? 3) Can she be moved from the health authority that she is in (and currently covered by) to another (we live quite a long way away from them and may need to move her closer). If so, how do we go about this?

Thanks.

Hi
Following a stroke at Xmas and having spent the last few months in Hospital, my father was awarded Continuing Healthcare (CHC).

He has Amylodosis and is not expected to live for more than a year.
In addition to this he has been diagnosed with the onset of vascular dementia, although we have been told that he will in all likelihood succumb to the Amyloidosis before this becomes an issue.

When he entered Hospital he was suffering from extreme water retention.

We were awarded CHC 6 weeks ago & have been trying to find a Nursing Home for him. The Homes which became available would not take him due to the dementia diagnosis & as a result he has remained in Hospital.
We did manage to find a Home for him, but the CCG have said it is too expensive & refused to fund it.

Last week my Father was reassessed and they have now withdrawn the offer of CHC.
Apparently as they have managed to stabilise the water retention he doesn't need the level of care and is therefore now. ineligible.
Although we have seen an improvement, my father is not able to stand unaided and we have been told that it is inevitable that the water retention will return, at which time it is unlikely his heart will be able to cope.
To me, he is in remission, however he is still life limited and is dependent on round the clock care.

We discussed the decision making matrix & many of the results I felt are subjective & the original matrix was not available & therefore we were unable to compare the results.
Also until I challenged the results, there was no Doctor or Social support person in the meeting & none of the 3 Nurses present had led a meeting previously.

If we had found a Home & taken up the CHC, would they have been able withdraw the funding & left us to fund it ourselves ?

We are unable to provide the support my father needs at Home & he still requires round the clock care and his Amyloidosis has not improved & the water retention could return at any minute.
Were they in their rights to withdraw the offer of funding ? could you offer any advise ?

many thanks

Hi my mum just got recommended for 3 months of Continuing Healthcare (CHC) funding, due to lack of evidence, they said that although she had been in hospital for over a month and then went back to a care home, it was only 2 days later to now they could assess. I am scared as i put her in a nursing home this week and i felt that the reason we did not get more of a positive answer was because we were self funding, although i and my husband were at the meeting we were chucked out when the final decion was made. At least 4 of her scores were high by everyone present. I was totally of the opinion that because we were self funding we didnt get the result we wanted. What happens now? She gets reassesed in 3 months and we could loose funding.

I was awarded Continuing Healthcare (CHC), the recommendation was verbally given at the DST meeting on 29th July 2016. Due to delays in typing up the DST and incorrect DST/letter being sent to me (in a nutshell) I have still not been paid the outstanding amount due. In the meantime my Mum died on 15th November. I am now being asked to provide a copy of my Mum's Will, Grant of Probate, my passport, bank statement showing the amount left the account, proof of address, driving licence. The funding date is from 13th July. So do I need to provide all this information - if they had carried out their admin processes correctly it would have been sorted before my Mum died. Can I claim interest and / or financial compensation. It's disgraceful that this is going on 6 months after the checklist was completed and I just want to be able to grieve for my loss, not continue to fight CHC!

Unfortunately my sister in law had a massive stroke recently and after weeks of physiotherapy, pain management etc the consultant today said "the hospital ward CHC list failed". How can we get to a full NHS CHC assessment ?

There is no cap on a CHC award. The Coughlan case stated very clearly that where there is a Health need, then all care (social and nursing) is met by the NHS. The NHS is not at liberty to overturn Court of Appeal judgements to suit their needs and budget.
In the National Framework Appendixes there is much about paying for privately provided and additional therapies and services, and the circumstances in which patients may be asked to pay for care in homes way above a reasonable cost within the area. It doesn't sound as if your FIL is in this category, and so they are quite likely trying it on.
If he has fully funded CHC then the NHS pays. If there is an element of Local Authority payment (and it's always worth checking whether any split fee decision they have arrived at is lawful, and reflects his needs as portrayed by the DST) then a means test can be done and a contribution requested. Check whether he is currently receiving fully funded CHC, have a read through the National Framework, and once your are clear about his facts quote it back to them, in writing, and stand no nonsense!

Hi
My father in law has been awarded Continuing Healthcare (CHC) funding, the CCG have stated that they will only pay up to a cap and the family must pay the shortfall. The home is of an average cost for the area and therefore I was of the view that the CCG were obliged to pay the full amount to cover all of his needs. In addition, now that he has been awarded funding an additional charge of £60 has been added for his 'nursing' care. Firstly, is there a cap on the amount a CCG will pay and secondly, can a nursing home charge additional fees automatically nursing care?
Thank you

I'm still waiting for a meeting with the NHS Continuing Healthcare (CHC) team to assess my mom who is 92 and has been receiving funding since Dec 2012. Today I spoke to the nurse in the home where my mom has been for the past 6 years. She told me she had conversed with the assessor in question during the week as to when they were making an appointment, as I was getting very distressed, and she inferred that 'they' are cutting down and feel after a period of 3 months a person is deemed stable and so not eligible for CHC. Is this true?

Can you tell me what should happen in the stages of putting a Personal Health Budget (PHB) in place. My son has full funding from Continuing Healthcare (CHC) and is moving over to a PHB 3 years after being eligible for it! The local authority (LA) paid his entitlement and CHC refunded him. They delayed changing him over to a PHB until I made a fuss. So now they have redone the Decision Support Tool (for info only apparently) and are gathering reports from all over. District nurses, doctors therapists etc but I still have no idea how a care plan is put together or what should be done in which order. I feel all they are really doing is looking for ways not to give any extra care that I requested, rather than upgrade his plan.

My son is 32 and has a long term illness (Leukodystrophy) with no hope of recovery. I have just had a review of my sons care package as they are finally changing him over to a Personal Health Budget. He has 24/7 care and double calls for showering and moving as he needs to be hoisted and cannot move or re-position on his own. The district nurse and OT have recommended moving or changing position ever couple of hours or so because he was developing red patches at the base of his spine and bottom which was very sore. His illness affect all things muscle and over the last 6 months has had double incontinence. He has a great team of carers and because of their meticulous care the patches have gone and they are managing to stop recurrence. However I am having to do a lot of the double up hoist moves because we just don't have enough care hours allowed, my business has suffered terribly. CHC say they will not fund 24/7 double care. Yet he needs it most of the day because along with the sores his bowel movements are unpredictable and he needs changing or showering or this could encourage the return of the sores. He is also young and wants to go out as much as possible but again needs 2 carers for the changing places hoists. So 2/3 valid points for the regular moving yet CHC say they can't fund it as a need. He can use anal plugs for the incontinence and stay in bed until a double comes on. No provision considered for going out. Yes, his package is big and I feel bad about that but he needs the help. I am getting older and worry about when I can't do it. I quoted the Framework to the CHC Nurse and she said that it wasn't worded correctly and didn't mean what it said and had caused them so many problems. So she was ignoring the framework and using her interpretation on it. She said the next step would be a care home as his package was expensive and its cheaper in a home. I said he doesn't want to go in a home! Her reply was well Mmm he does have capacity for now. I am so worried and really don't know what I can reasonably request as his right. Any advice would be very much appreciated.

My sister's husband has Dementia and he receives Continuing Healthcare. However at times his one-to-one career is taken away from him to take care of others in the Home. Has anyone else had this experience and who might be able to give her advice?

My mother who was diagnosed with Alzheimer's 16 years ago has been in a care home for 6 years gradually deteriorating. We applied for Continuing Healthcare (CHC) 3 years ago and were successful. With yearly assessments just going over the basics... Generally slow deterioration. This week for some reason after a meeting with the NHS nurse assessor they want the care home to provide more information to my mother's every day needs, which have not changed to any extent in 3 years. They have not granted ongoing CHC as with other years and have given us a month to come up with more information. I am 66 and this is a constant worry. Why after 3 years and little deterioration to my mother's health are they asking for what was adequate over the last 3 years.

I applied, last year, for Continuing Healthcare (CHC) for my husband who suffers from Alzheimers. Although the initial application and Checklist seemed to be relatively trouble free, the Decision Support Tool (DST) and what has followed has been a war of attrition.

After many delays and some very underhand behaviour, CHC team member phoning our mental health professional to try to persuade her to lower her score of Severe for behaviour, and several other questionable activities, a meeting we had last week has come up with a 'Jointly funded package' suggestion. Obviously this means the 'social' aspects will be means tested. I'm told that a Matrix is used to calculate the proportion of Health to Social Care funding. I told the Clinical Lead, who came up with this, that my experience to date has been one of interpretation and manipulation rather than looking at the raw needs and matching these to the guidelines laid down in the Framework. He tried to assure me that this 'tool' is objective but, as I said, the formula can only be applied once the data is entered and the data can be manipulated.

It has been recognised that my husband does indeed have health needs but they are still holding out against a 'primary health need'. He has a score of Severe for Cognition and a disputed Severe for Behaviour; his Mental Health and Social Workers and the staff at the Day Centre he attends, are all adamant that his Behaviour is Severe but the CHC are determined it is only High. He also has 5 Moderates and 2 Low scores.

I have spoken to a specialist solicitor today and he drew my attention to the National Framework which deems someone eligible if they have 1 Severe together with several needs in other Domains. I have just emailed all the relevant personnel informing them of this.

Any useful information about Jointly Funded Care Packages would be most welcome.

A question. Who decides what care he can have/needs after eligibility is established. I need the carers now. Do I have to wait until CHC is agreed, or do they have to pay for care in place if they have stated on DST that he needs 2 carers in all activities of daily living? and Needs above routine care?

Hi all, My adult son (34) has had Continuing Healthcare funding for 3 years now. It is paid through the local authority (LA) and they claim it back from Continuing Healthcare. The reason for this apparently is because they were short staffed and didn't have the resources to change it over to CHC! Whenever I have contacted the social worker for more additional help to his package (more care hours made available) I am told he doesn't have a high enough Indicative budget to cover it. Now my son has a rare Leukodystrophy and will never get better only worse and he is now being hoisted all over which requires 2 carers by law. They say they can't fund 2 carers for 'Just in case'. He is doubly incontinent and needs frequent changing. He needs hoisting from bed to commode, to wheelchair and vice versa and he can still enjoy days out but needs 2 carers. Is it acceptable to ask for funding to pay for 2 carers. They also told me I am looking at a care home as its cheaper to which I replied he doesn't want to go in a home and I don't want him to. They then said oh well he does have capacity to say this. Now I am also worried they will try to prove he hasn't got capacity and take over his life! I was under the impression that with full funding agreed they had to cover his care needs 100% and in his own home if he chooses. They now say they have to do a new Decision Support Tool (DST) because his package is changing even though in July it was agreed he was still eligible. I said a DST is to confirm eligibility not to set his package (stated in the Framework) and it also states that you can amend a care package at any time with no mention of a DST, so what are you up to... They said because we're moving it over to a CHC Personal Health Budget we need to do one. Any Advice welcome as I think I am getting set up somewhere. Thanks in advance.

Our 86 year old mother was assessed for Continuing Healthcare (CHC) funding at our insistence, whilst in hospital for delirium following a urine infection and a fall at home, and thanks to the information on this very informative website and plenty of research before the MDT meeting she was approved for CHC funding for 3 months, which I gather is the standard time before review is required.

She moved into a nursing home, with the intention from the start of seeing how she progressed and with a view to going home with an appropriate care package if and when she became able to. The Decision Support Tool (DST) was completed in the Multidisciplinary Team (MDT) meeting just over 2 weeks ago, and at that time Mum was deemed to not have mental capacity, also was under a Deprivation of Liberty Safeguard (DOLS) as she kept trying to leave the ward, so we (myself and my sister) were in the meeting to act in her interests. Mum was transferred to a nursing home 4 days later and has now been there almost 2 weeks, she has been very unhappy there and has exhibited very challenging behaviour, being agitated and aggressive at times both verbally and physically, she has hit and pushed staff, and wandering, particularly at night, although the confusion seems to have lessened somewhat, she has had two infections and diarrhoea whilst there as well, and has a catheter, is doubly incontinent yet mostly refuses to be changed by staff. Often they spend well over an hour trying to persuade her to go and be cleaned up and changed, so is at risk of more infection and skin breakdown,and only two days ago had to be taken by ambulance to hospital after a fall out of bed, thankfully no injuries. She has also lost a stone in weight since the admission to hospital, despite not being overweight in the first place, and often does not eat or drink enough.
Yesterday she was seen by a psychiatrist after the home requested a DOLs following her behaviour and several threats and attempt to leave the care home, and he has deemed her to have borderline capacity, she is insistent that she wants to go home and no one is able to stop her making what we and they consider to be an unwise decision, so they and we have no option but to arrange care for her in her own home, including any nursing care for the catheter and whatever else might be needed.
The staff at the home have all but said to us that she is likely to end up back in hospital again as they, and we, believe that she will not cope at home with only a few short visits each day by various staff, and we are of the belief that she is likely to wander out of the house at night and is at high risk of self neglect and hurting herself, we intend to write a letter stating our disagreement with her decision and our concerns about her safety.
Anyway, what we really need to know is if the very recent CHC funding decision will still stand when she goes home, and that her care will be funded until her case is reviewed after the three months is up, can they insist on stopping it, even though at the moment her needs are pretty unpredictable as she has barely had time to settle down in the nursing home, let alone have her longer term care needs assessed? Which was the idea of the transfer in the first place, to see how things went for her and if the delirium lifted enough for her to be able to return home, presumably with some kind of rehabilitation assistance and help to hopefully regain her level of independence that she had prior to hospital admission. She was, before admission to hospital at the end of July, completely independent and had no social care needs. This is all rather sudden and surely until her needs are clearer, no one can decide to remove her funding, or to reassess her using the checklist and DST after only two and a half weeks since she was deemed to have a primary health need? The care home manager has told us that the funding will not be transferred and that she will not get it, yet her health needs have barely changed? Surely this is wrong? We will be challenging it very strongly if removing funding is suggested of course.
Any advice on this is very welcome. Can we insist on the current funding decision standing until her longer term needs are clear? She certainly meets the criteria for unpredictability, and with the exception of the delirium appearing to clear enough for the psychiatrist to deem her having borderline capacity, nothing has changed, indeed she is actually worse off, as when the DST was done she had no catheter and had no infections, she now has a catheter and two infections as well as at high risk of skin breakdown, and her behaviour is certainly changeable, and is managed by staff, who have also said that she really needs 24 hour supervision but won't get it at home, but she can however make the decision to go home! We are also extremely concerned about the effect that the move will have on her, as the move from hospital to the nursing home rendered her having hallucinations, and being disorientated and aggressive and agitated, despite apparently the day before the move being pleased and looking forward to going to the care home!
To be honest, if she goes home, it is only in our view (and it seems the care home's) a matter of time before she is back in hospital or a care home.

We would love her to be able to come home with a package of care, she is only round the corner from me, but we of course want her to be safe.

Very complex and worrying, we are seriously concerned for her safety, but at least if we have some advice on the funding, that is one worry less. Thanks in advance.

Thank you for the article. I have just obtained funding for my mother in law based on an assessment on the 11/08/2016. The check list was completed however on the 5/05/2016 so there has been a considerable delay in getting the DST/MDT done. However the CCG state in their letter that as the delay was 'beyond their control' then they will only fund from the date of the DST. They refer to Annex F of the National Framework.
Can you confirm that they should under the NF fund from day 29 following the check list irrespective of the delay and the reasons for the delay?

Following a successful retrospective claim, the NHS are now requiring bank statements and invoices. Unfortunately, my father-in-law must have destroyed bank statements - so we are left with the statement of account that the care home provided some years back. I now notice that this does not reflect the invoices we have --- there are two big discrepancies. 1. The care home continued to charge for 2 weeks after my mother-in-laws death and 2. The deduction for "funded nursing care" was not deducted from the last months invoice. I assume the care home applied for this retrospectively and then pocketed it (worth about £400). I suspect that after 9 years we stand no chance of getting this money back and I suspect NHS will argue that this would have been paid and therefore will not take this into account.
Does anyone else have any experience of:
1. Payment for a period after death charged by the nursing home?
2. "funded nursing care" not being deducted from the final invoice by the care home?

Thanks for advice I will peruse the Coughlan case and National Framework this weekend. KInd regards Lynn

Congratulations. If you have secured funding for the second year, and achieved some acknowledgement of omission on drugs domain I'd be tempted to copy and paste the wording of the domain and illustrate with details of your wifes' needs and condition why you think she meets Severe. If you can get additional backing from Gp or Consultant so much the better. Remember to demonstrate how the needs in this domain interact with others to demonstrate complexity, predictability and intensity. I'd then send it recorded delivery to the CSU to ensure they receive it, and next time round work from that. It may be that you need to make vigilant notes on other domain changes over the next 12 months to ensure your wife retains the necessary 2 Severe scores, or other Combination listed in The National Framework.
Evidence in MDT doesn't have to be of Court standard, but omitting material facts for no good reason would be grounds for an appeal next time, if you need it. From my own experience, you are unlikely to win much more of a change in position by arguing with them now, and without further written relevant evidence.

My wife got CHC renewed for a second year but the assessor tried to miss a domain out and cut a chunk out of the drugs severe domain. I think this is an attempt to " hollow out" the DST to make it easy to make her non qualifying at the next assessment. I have written several letters and got them to correct some of it but the drugs domain they acknowledge I am unhappy with the notes made but refuse to amend them.
Should I submit a formal complaint through the complaints procedure? It strikes me that I will be complaining to the same body that has proved obstructive so far?

This is a very timely article as I had worked so hard to prepare for my mam's (second) CHC assessment that when we received the letter stating mam was eligible I assumed, like a golden ticket, everything would be put into place by the CHC and the day home care service. How wrong was I! I rang the CHC Team and spoke to my commissioning manager (?) who avoided any clarification of what was to happen next? If it hadn't have been for our palliative care nurse, we wouldn't have had 24 hour care put into place. Our nurse spent almost half an hour on the phone to the CHC commissioning manager, explaining my mam's degenerative condition and also arguing for my corner as I work and have had the responsibility of coordinating and caring for mam's needs for over 2 years. We do have 24 hour care in place now but we still have issues with the day care package and what they do and don't do!! Also, I'm still not sure what else I can claim for as there are products I buy e.g. soft wipes as mam has constant issues with saliva. I also pay for a reflexologist as mam has constant muscle spasms and this relaxes her and seems to help with her condition. Again, when I tried to clarify this with the commissioning manager she was very dismissive and curt in saying they didn't provide funding for any of that! So, a fact sheet or information on the actual products or services that the NHS should be paying for would be a great help. The whole CHC experience has been unpleasant and very exhausting. However, I was lucky enough to find your website and without the comprehensive information you provided I don't think I would have applied for CHC for the second time.
Kind regards Lynn

In my experience, the eligibility letter arrived after much prompting, with an incorrect start date. The care home was paid nothing, and my relative received no refund on fees paid before eligibility was announced. No reply to requests for a retrospective claim despite many letters sent recorded delivery.
There is no limit to the games the NHS will play to avoid their liability throughout the entire process. They are clearly hoping for relative (or perhaps me too) to die before they "settle up".
Sadly, getting CHC is often just the start of a long running project.