What should Continuing Healthcare funding cover?

Hi Grace - yes it is more common today for CHC assessments to be carried out outside of the hospital environment and this is covered by the new National Framework which will be in force from October.Some CCGs are adopting this policy already. If you would like to speak to us about assisting you through the process do not hesitate to get in touch with us or with Farley Dwek. Kind regards

Hi Roo - top-up fees for a CHC funded individual are illegal. There are certain circumstances where they can be requested but you really need to see what the contract says about what is included. They sometimes refer to 'Hotel services' being additional such as a room with a view or ensuite etc. I would definitely question this. Regards

Thank you for your interest; something I have found to be completely lacking despite widespread appeals. I feel I should clarify a few matters so that this history can stay in print and online with honesty whatever is our personal outcome and for the sake of any families following in our footsteps. If the threat to ‘cease’ our funding is carried out I believe it will mean in effect that I will not be allowed to administer it – not that they will attempt to overturn the actual assessment of needs. I suppose that it would actually mean some kind of agency type provision for sending care assistants to us. We do have a care package and a plan of hours of care which is in fact more generous than the original ILF one was; there is no contesting that aspect at all, and there never has been. Indeed we did transition from the ILF in a VERY unworldly way; this was undertaken by a single nurse who visited our home several times. However she has absolutely no knowledge at all of Personal Health Budgets (PHB), quite what may be involved in managing one and much of what she told me at the time has since been dismissed by others at the CCG. I even had to correct her arithmetic at the outset as her own explanation did not make sense. During those visiting months she did also complete a full assessment of needs in which I had a good deal of input as she has no understanding of someone like my daughter. I therefore have no argument about the basic care plan / care package at all. The issues seem to be that the CCG just are unable to accept that an individual like me should be allowed to manage their own PHB, (especially if that individual should be me) and in particular if such an individual should question the actions of the CCG. There is more to it as well but I hope this response will be of value in reply to your own thoughts.

Reading through your post, a few things spring to mind, though I'll confess I'm quite new to all of this. Firstly, they cannot legally simply cease your funding without proving your daughter is no longer eligible, and as I sadly not your use of the word palliative, this alone would have frequently granted eligibility in its own right.
A broker or the practice of 'brokerage' is where an independent third party, funded wholly by the CCG, but not influenced by them except in following 'the rules' and working within existing funding limits (to some degree). They are either employees or self-employeed, of a commercial company or charity. Their role generally is to work with you to identify your needs in line with the rules set down by the Practice Guide and the Care Act, to create a care plan and then work with the primary healthcare provider to get the funding approved by the CCG. After this comes the task of turning the care plan into a care package.

If you don't currently have a care plan or care package this would explain why you are having the problems getting answers as to how you can spend the money - because you are asking questions which are never asked.

I suspect that you transitioned, in some unworldly way straight from ILF to CHC and received an equivalent budget. Quite how you achieved this without going through a version of the process I described above is a mystery to me, as somebody should have been responsible for your transition from ILF to CHC, or maybe ILF to Adult Services to CHC - in which case your Social Worker fouled up royally.

Where you need to get, I suspect, with the aid of the broker, is the point where you have a care plan, even if you, yourself, are the 'care package' which defines in no uncertain terms how, within the rules, you will spend the money. In other words, the Plan (built within the guidelines) is your guide to spending the funding, or for most people the plan leads to a package which soaks up all the money. While people have Personal Health Budgets, and can build a reserve, said money in the bank is virtual, and is generally measured in 'care hours' or 'respite nights' or by some other pre-agreed measure.

The care plan and package can be very broad however, and include everything from bespoke equipment not available from your local joint equipment store, to housing adaptations under very specific circumstances. As you can only 'spend' the money in the manner agreed to in your plan, you would never have obtained an answer to your question from the CCG, as such an answer would not exist.

I hope this makes sense. As I often say, Google is your friend, and now, so is your broker.

I don't understand 1:1 as a regulatory process, through obviously do in terms of a care practice. It sounds as if there is a disconnect, and the need for the 1:1 support has not been properly considered within the scope of her annual Continuing Healthcare (CHC) reviews, or indeed whether she's been having said reviews. Has there been any word on this from the CHC? Did they ever agree to fund the 1:1 as part of her care plan at the outset?
The problem is that unless care plans are updated as needs change, the CCG will continue to provide the same level of funding, allowing for price rises on the accommodation part, until at some point the amount they are paying fails to meet what the home is charging.
As I understand it, and remembering that the CCG has to be fiscally responsible to meet the needs of all patients on CHC, the CCG is allowed to propose a move to a (less expensive) establishment or maybe a smaller room, especially if this means the 1:1 support can be continued.
However you need to speak with your primary provider (I guess the community nursing matron or equivalent) to bring up the matter with the CCG to make sure that all of you are 'on the same page'. The difficulty with CHC is that as a family you are NOT permitted to pay the difference yourself, but then, as I understand it, neither is anybody being forced to divest themselves of capital or the family home either. A case of catch 22 - but one that you need to start asking more probing questions about.
BTW - I am not an apologist for the NHS as my last couple of posts might suggest - I too want more from my package. However I am also a realist, and a firm believer that that the Government, and its executive agencies in the form of CCG's, Hospitals and Community Health Trusts should operate fairly and balance their cheque book annually, just as we all have to. That being said, my preferred way of dealing with overspends is to [get rid of] middle and senior management. After all, it is the minions and worker-bees that get all the work done!

VI - if your mum needs the chair as part of her assessed health needs - and it sounds as though that's the case - this should be covered under her NHS Continuing Healthcare funding. If they don't provide the chair when it's needed (i.e. now) this could be seen as negligence or neglect, as the implications for your mum's skin integrity are potentially serious.

Just wanted to clarify a comment from distance earlier. He is correct with respect to the CCG being unable to cap payments but for two points:
1. The care plan agreed has to meet all reasonable needs within the now updated rules and regulations. If some element is not being covered get your broker in and discuss the matter. Remember the funding is not infinite as it has to cover all eligible service users.

2. This leads me to a second duty imposed on the CCG which is that as I hinted above, they have to ensure that all packages are equitable across the service user group. In other words, everyone is entitled to their fair share which can force a.smaller CCG to seem to be unfair and mean.

Hope this gives pwrspective.

Good advice there from duckface. Paul - This may also help regarding CHC and choice of care homes: http://caretobedifferent.co.uk/continuing-healthcare-funding-and-choice-of-care-home/ CHC is reviewed initially after three months and then annually. It should remain in place for as long as your mum's care needs meet the funding criteria. Be vigilant - many families report that CCGs try to remove funding at the three month review. There is no basis for this however, unless care needs have fallen below the eligibility criteria. You should be involved in the three-month review and invited to input.

Thank you Hazle for at least taking note. Following on from that please EVERYBODY also respond to the Care To Be Different request for information about these issues to be sent to The National Audit Office to encourage them to investigate........

http://caretobedifferent.co.uk/potential-investigation-nhs-continuing-healthcare-can-help/

We need them to undertake this investigation then highlight where the problem areas need attention.

Additionally, I have just petitioned both my local MP and my CCG using the submissions provided by The Community Healthcare Alliance campaign here.

We all need to ensure these campaigns grow in strength and volume.





And

Paul, look back through this list for my two entries in my name Connie Williams. You and I appear to be the only ones in this situation of choosing to give care at home and using Direct Payments. In six months I have got nowhere to date and receive no interest or help.. I am barred from advertising for care workers as the CCG say I must not use the funding for that. I am advised elsewhere that this is not the case. But I have now written to over 60 legal practices and similar across the UK. Not one will help. The main interest with this issue currently is only about Care Home fees. You could also have a look at the Community Healthcare Alliance under the Umbrella of the Parkinsons Society for some more information. Sorry I cannot offer any more positive comment.

Jenny - it may be worth getting a letter from the specialist therapists at the hospital that stresses how important the ongoing therapy is and why. If your sister in law needs that therapy as part of her assessed care needs, then CHC should cover it.

Helen - these articles will help you get started: http://caretobedifferent.co.uk/how-do-you-know-if-a-continuing-healthcare-assessment-should-be-done/ and also: http://caretobedifferent.co.uk/getting-the-nhs-continuing-healthcare-assessment-process-started/ These links will also help: http://caretobedifferent.co.uk/nhs-continuing-healthcare-funding-28-useful-links/ These are the stages of the assessment process: http://caretobedifferent.co.uk/what-are-the-different-stages-of-nhs-continuing-care-assessment-and-appeal/

Hi Hazle - thanks for your question. All the information we publish here at Care To Be Different relates to the care and care funding system in England, and the system in Northern Ireland is different, so we can't comment on your own situation. I don't know if this link will help, but it might be worth a look: https://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=2292

Mel - the NHS funding must cover all care needs. This may help: http://caretobedifferent.co.uk/continuing-healthcare-funding-and-choice-of-care-home/

Mary - are you in England or Wales?

Thank you for your very kind words, Janet - and, yes, the hospital has a duty to make sure your dad's needs are covered and that he is safe, whatever that involved. Sadly it's not unusual for people to experience very poor care in this respect, when it comes to elderly people with dementia.

Connie - as those requirements are directly related to your daughter's care needs and are vital for her health, wellbeing and safety, you could write to the CHC team and simply tell them that this is what you are going to do. (Send it recorded delivery.) That way, it is up to them to object if they want to. I realise this may trigger a visit or review, though. The CHC team should also have information about what the payments can be used for.

What you've been told is nonsense, Laurence: http://caretobedifferent.co.uk/where-can-a-person-receive-nhs-continuing-healthcare-funding/

sd - your mother could be moved prior to the CHC review but you should only ever start paying care fees if a CHC review clearly shows that your mother no longer qualifies for funding. I would imagine that's unlikely if she currently receives the funding and her needs are increasing at the same time. Be vigilant, though, It is not where she is that matters, but what her care needs are: http://caretobedifferent.co.uk/where-can-a-person-receive-nhs-continuing-healthcare-funding/ That should help answer your second question, too.

Laurence - they may try to persuade you that she has to move. However, the first thing you can do is to ask the care home if they have - or have had - residents funded via CHC. If they have, the NHS cannot really justify saying that your wife cannot be funded there also. If your wife moves to a difference CCG, and she is receiving CHC, she should continue to receive CHC funding from the original CCG until the usual routine review, at which point funding responsibility may be transferred to the new CCG if she is still eligible.

Yes, sometimes you do have to choose your battles - I can certainly understand that. There is no cap on CHC, even though many CCGs talk about their supposed 'tariffs'. As mentioned in the article, CHC must cover all assessed care needs. Another way of looking at this is to think about a person in hospital. The person requires NHS care at that point, the NHS is obliged to provide care at that point - free of charge - and the hospital must treat whatever needs arise. It would be illegal for the hospital to ask the patient to pay for that. If it were not for care homes, many care home residents would be in hospital, receiving NHS care free of charge. The fact that a person is in a care home does not affect this principle.

Have they actually been assessed for NHS Continuing Healthcare, Ellie? If not, it sounds as though this needs to be done.

There is something called 'joint funding', yes. However, if a person has sufficient needs to trigger some NHS funding, then the question that needs to be asked is why have they not been found eligible for full Continuing Healthcare (CHC). Reports from many families suggest that where joint funding is suggested, healthcare needs have often been wrongly played down. If a person is not eligible for full CHC, and yet they have some nursing needs (and they are in a nursing home), Funded Nursing Care is awarded (£112/wk). If they have needs above this level, though, full CHC should be awarded. So be cautious whenever you hear the words 'joint funding'.

The process is supposed to take 28 days from Checklist to final decision. Keep pestering them with letters and calls until they respond. You can also appeal the first decision you disagreed with it - and if you're quick. In the meantime, you could also write to the Head of Adult Care at the local authority and say that the local authority is currently potentially in an illegal position, by effectively having responsibility for your mum's care before a proper funding decision has been reached. http://caretobedifferent.co.uk/nhs-continuing-healthcare-assessments-2/

Go for the entire amount, Judy. There's no fixed 'tariff' for CHC.

Look above at the above comments regarding the National Framework, page 46 paragraph 167. It would appear that as you have been awarded full CHC funding, you can recover the total costs expended for that year.

A couple of points that may help, Jacqueline: Firstly, the NHS should not expect family members to provide care if they can't, and if family members are unable to provide care (such as when your stepmother needs a break) the NHS must make sure care provision is in place. Secondly, you stepmother doesn't have to agree to fully managing the budget herself. It's worth googling more about personal budgets, e.g. AgeUK.