Here is a common scenario:
‘Bill Jones’ has been a resident in a care home for several years and has now become eligible for NHS Continuing Healthcare Funding. That is great news. Having sold his home to pay for his care out of private means at £1,500 per week, he will now be entitled to a free package of care provided by the NHS for his assessed healthcare and social care needs, including the cost of his accommodation at the care home.
According to the NHS well-established maxim set out in paragraph 180 of the National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care (2018) – “NHS care is free at the point of delivery” (ie when you need it) – so all Bill’s assessed care needs should be met in full by his NHS Continuing Healthcare Funded package of care – free of charge and at no cost to him – regardless of the care setting and irrespective of his wealth and means.
Paragraph 180 continues:
“The funding provided by CCGs [Clinical Commissioning Groups] in NHS Continuing Healthcare packages should be sufficient to meet the needs identified in the care plan. Therefore it is not permissible for individuals to be asked to make any payments towards meeting their assessed needs.
Why are the care home charging me additional fees?
Top-up fees are usually charged when the individual needing care or their family have specifically requested more expensive accommodation.
However, as above, a care home is not permitted to charge individuals anything towards the cost of their assessed healthcare needs just because the care home costs more than the CCG is willing to pay. To do so is unlawful and entirely contrary to the ethos of the National Framework.
Care homes can, however, lawfully charge for hotel-style luxuries or lifestyle choices, personal preferences or wants. Commonly, these lifestyle preferences might be where an individual would like a larger room (or one with better facilities or a better view) which is not related to their healthcare needs.
Therefore, it is important that you understand the basis of any proposed top-up fee and check to see if it is for assessed healthcare needs or merely personal choices. The former is unlawful, the latter is not.
So what happens when NHS Continuing Healthcare Funding is awarded?
In Bill’s case, the care home fees are likely to remain the same at £1,500, but now his local Clinical Commissioning Group (CCG) will take over responsibility for payment instead. That is what should happen in theory, but may not happen in practice. You may be caught between the care home and the CCG. Read on…
In our scenario, the CCG will usually enter into a contract with the care home to pay for Bill’s assessed NHS Continuing Healthcare package, and we would expect the contract to make it expressly clear that the care home is not allowed (ie unlawful) to charge a top-up fee if the cost is more than the CCG are willing to pay.
Having said that, and somewhat contradictory, it is quite common that CCGs will say that they are only prepared to pay a fixed rate (‘bed rate’) for a care home in their area regardless of the individual’s assessed healthcare needs – and that sum can often be much lower than the actual cost charged by the care home.
So where do you stand?
In Bill’s case, using round figures for ease, let’s say that the CCG will only pay a fixed rate of £1,000 towards the cost of his assessed care needs rather than the full £1,500 – leaving him to pay the balance due of £500 – ie ‘top-up’ the shortfall. That is contradictory to the National Framework (and perhaps the CCG’s contract) and is unlawful. After all, isn’t the whole point of NHS Continuing Healthcare Funding that it should be sufficient to meet all Bill’s assessed healthcare needs, not just a proportion of them?
Supposing Bill has more challenging, complex, intense and unpredictable needs that require far more input, and the £1,000 isn’t sufficient for his daily care needs. Just because the CCG say that is their ‘standard’ rate for that care home, doesn’t make it right. The paid care package should be based on the individual’s particular assessed healthcare needs and not a ‘one size fits all’ scenario. If Bill’s assessed needs as a resident in that home costs £1,500, shouldn’t the CCG should pay for all of it in accordance with his care plan?
In practice, to get around the issue, the CCG or the care home may suggest an alternative solution is to move Bill 7 miles away down the road to a cheaper care home within the CCG’s £1,000 budget. In that way, all his care fees are paid in full and so he won’t have to pay anything extra – ie avoid paying a top-up fee. But is that reasonable?
That move is likely to have a detrimental effect on both Bill and his relatives. Not only could it mean moving a frail and vulnerable elderly gentleman to new and unfamiliar surroundings, which is both unsettling and disorientating and provoke more challenging behaviours, but it can also directly impact on his family. This heart-wrenching move, plus significantly extended travelling time to a more distant and inconvenient location, could mean less frequent daily/weekly visits, and greater worry and anxiety as to his well-being. A common scenario that may sound too familiar to many readers.
The NHS website https://www.nhs.uk/conditions/social-care-and-support-guide/money-work-and-benefits/nhs-continuing-healthcare/, helpfully says, “If there’s evidence that a move is likely to have a detrimental effect on your relative’s health or wellbeing, discuss this with the CCG. It will take your concerns into account when considering the most appropriate arrangements.”
Paragraphs 283 to 287 of the National Framework also provide some useful guidance as to higher care cost packages. Where the care home rate is higher than the usual rate the CCG will ordinarily pay, they should look at the matter sensitively and liaise closely with the individual and their family or representatives, and consider:
“if there are reasons why they should meet the full cost of the existing care package, notwithstanding that it is at a higher rate. This could include that the frailty, mental health needs or other relevant needs of the individual mean that a move to other accommodation could involve significant risk to their health and well-being.”
“…. whether the cost is reasonable, taking into account the market rates in the locality of the placement. They should also consider whether there are other circumstances that make it reasonable to fund the higher rate. Examples might include: where the location of the placement is close to family members who play an active role in the life of the individual, or where the individual has lived there for many years and it would be significantly detrimental to the individual to move them.”
What happens next?
Upon being found eligible for NHS Continuing Healthcare Funding, the care home will probably want to meet with the family to enter into a new contract to pay the care home fees. Part of the fees will be met by the CCG – in Bill’s case £1,000 – but you will be asked to sign your agreement to pay the ‘top-up’. The top-up may not be explained to you clearly or even be hidden in the contract or described as something else to disguise its true (unlawful) identity. The care home should be completely transparent in its dealings with you. But the dilemma is that the proposed top-up fees are unlawful, and yet you are knowingly being presented with a legally binding contract to sign.
Don’t forget that care homes are running commercial enterprises, and if you can’t or won’t pay, then the alternative is to find other cheaper accommodation. It is far easier for them to ask the family, a vulnerable target with means to pay the top-up fee, than it is to approach the CCG.
Some families tell us that their care home has issue a veiled or implied threat that, unless they sign the contract, they will not be able to keep their relative in the care home and they will be put out on the street. Callous and uncaring? Duress and exploiting a vulnerable position? Unreasonable behaviour? The answer to all three questions is ‘yes’. We have even heard from one family who have been ‘threatened’ with their relative’s eviction even in these most challenging times where coronavirus is rife and care homes are not admitting new residents.
This now becomes a hard choice – flee or fight?
Pay the unlawful top-up fees and have peace of mind that your relative is safe and well-cared for in a home that is suitable for their needs and close to you; or risk the upheaval of moving them to a new care home, with the stress, anxiety and challenges that will present (assuming you can indeed find alternative accommodation!). Some will go ‘quietly’ and flee, and rather than rock the boat, reluctantly agree to pay the top-up fee as they feel they have no choice despite being coerced into paying. The alternative is to fight and make a fuss, stand your ground and risk confrontation with the care home (and worry about the potentially negative effect this may have on your relative’s care at the home). For families in this predicament it can be a tough decision and trade-off.
Be aware of these 5 points:
- Top-up fees are the exception – not the general rule.
- Top up fees should always involve the informed consent of all the parties.
- Involve a written agreement where the arrangement should be revised regularly (i.e. annually).
- Top-up fees are voluntary and must always be optional, affordable and transparent.
- They should only be charged if a person is receiving a genuine upgrade in the care home’s services.
Our top 10 tips:
1. Have a conversation with the CCG and advise them that the cost of care is greater than the care package of assessed care in place and it will need to be increased to meet their needs.
2. Point out the care home are proposing to charge an unlawful top-up fee and ask what are they going to do about it?
3. If you want to dispute a decision to avoid having to pay higher-cost accommodation, you should do this via the NHS complaints process.
4. Ask the CCG to see a copy of the contract between them and the care home to check what it says about charging top-up fees!
5. Remember to quote paragraph 180 of the National Framework – see above.
6. Argue that your relative is not getting any lifestyle or hotel-style luxuries and is in a standard room – so the assessed care package should meet all the care home fees in full.
7. Speak to the care home and point out that your relative has been assessed and found eligible for NHS Continuing Healthcare Funding. If the care package being paid by the CCG is insufficient to pay for their care fees in full, it is incumbent upon the care home to approach the CCG on your behalf and argue that their funding needs increasing – and that the CCG, and not the family, should meet the shortfall.
8. Before you agree to any top-up fees you should reserve the right in writing to challenge them at a later date, and write that you are signing under duress.
9. If seeking to claim back top-up fees retrospectively, then beware that there are time limits that apply. This is a very specialised area where we strongly recommend you seek legal advice. Visit our one-to-one page for more information.
10. Above all – don’t take ‘no’ for an answer – be persistent.
Remember that if you do receive NHS Continuing Healthcare funding, this cannot be topped up as it is unlawful – and no one should ask you to do so.
For additional reading on the subject, read our earlier blogs:
What’s your experience with top-up fees?