Paying top-up fees can cost families a fortune, but are they lawful? Are you paying more than you have to?
Here’s Tip no. 22 in our 27 top tips series on NHS Continuing Healthcare.
Top-up fees are complex area that is often misunderstood by both individuals and care homes alike. There is often much confusion as to whether top-up fees are ever lawful, and if so in what circumstances can care homes charge these fees.
Assessed clinical needs vs social or personal ‘wants and needs’
Top-up fees are usually associated with the additional costs of accommodation. Understanding the distinction between assessed clinical health needs and social needs is vital to determining whether a care home can legitimately charge top-up fees.
When can a care home charge a top-up fee?
The answer really depends upon the basis or purpose for which the top-up fees are being charged. Essentially, you need to establish whether this additional cost (ie the top-up fee) is for the resident’s assessed core healthcare needs or is it for their social needs or ‘wants’? The former is unlawful, the latter is not.
In short, if an individual is already receiving NHS Continuing Healthcare Funding following clinical assessment – then the answer is that the care home shouldn’t lawfully be charging any extra top-up fees. That is the whole essence of NHS Continuing Healthcare Funding – it is supposed to be provided free at the point of when you need it and all related costs of additional clinical healthcare should be met in full by the NHS. Read below, paragraph 180 of the pending National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care 2018 (Revised) which you can quote to the care home!
“NHS care is free at the point of delivery. The funding provided by the CCGs in NHS Continuing Healthcare packages should be sufficient to meet the needs identified in the care plan. Therefore it is not permissible to for individuals to be asked to make any payments towards meeting their assessed needs”.
Therefore, the answer is that top-up fees should not be charged for clinical health needs where there is already a package in place for NHS Continuing Healthcare Funding. If the package isn’t sufficient, then ask for the care home to have it reviewed.
NOTE: If however, individuals who wish to supplement their existing NHS funded care package to meet their personal preferences, they can still of course do so, but at their own expense, (and provided that these preferences do not replace or conflict with elements of care funded by the NHS). So for example, if an individual wants hairdressing, beauty treatments, manicures, pedicures and other spa-type services – then it is permissible for the care home to charge separately for these added ‘lifestyle’ services as they are a personal choice and unconnected with their assessed clinical healthcare needs.
Similarly, supposing the care home provides standard accommodation, but the individual chooses (or wants) to have a larger than standard room with a better view or private balcony, and enhanced facilities such as a kitchenette, en-suite bathroom etc. (i.e. related state of accommodation, rather than clinical health needs), then it may be lawful for the care home to charge a top-up fee for the additional ‘hotel-style’ facilities or services that extend beyond the person’s assessed care needs – even if NHS Continuing Healthcare Funding is in place. The top-up fee here doesn’t relate to the assessed healthcare need provided – but for a social care element – sometimes described as a ‘lifestyle’ choice, or more frequently referred to as the ‘luxuries of living’ as opposed to a clinical need for them. In such circumstances the care home can charge for a ‘personal want’ as it is unconnected to their NHS care package.
For further reading look at Practice Guidance Note 99 of the previous National Framework for NHS Continuing Healthcare 2012 and the helpful example set out at of an individual with challenging behaviours where the extra cost of accommodation is due to their assessed clinical needs, and not just because it would be nicer to have a bigger room (see Paragraph 99.2).
OUR TIP 1: You must clarify with the care home provider what is the basis for the proposed top-up charges.
OUR TIP 2: If the NHS Continuing Healthcare funded agreed package in place is not sufficient to pay for all the assessed individual’s clinical care needs, then you need to act.
Rather than the care home just getting away with charging you top-up fees because it suits them, get them to apply to the CCG on your behalf, and explain why the agreed NHS budget allocated for the individual is now insufficient to meet their increased (challenging) clinical health needs; it is for the care home to re-negotiate the budget with the CCG and apply for more funding if it is costing them more to care for the individual than budgeted for.
Remember: care is supposed to be free at the point of need – so the CCG should meet the reasonable cost of increased care needs – not you! So take action and push for your rights – it could save you a fortune in unnecessary top-up fees.
If, however, the care is being already funded by the Local Authority, then the care home should ask the Local Authority to pay the for top up fees, not the family.
In the case of a private paying patient who does not have NHS Continuing Healthcare Funding in place, then I’m afraid if you want these hotel-style luxuries then you’ll have to pay for them.
For further information, why not look at The Care Act 2014, which provides:
- Top up fees should always involve the informed consent of all the parties
- involve a written agreement and that the arrangement should be revised regularly (i.e. annually).
- Top up fees must always be optional, affordable and transparent.
- They are not intended to cover any shortfall in Local Authority funding.
- See also the NHS National Framework 2018 (paragraphs 270 – 278)
Finally, in conclusion: it is not permissible in law for the NHS commissioner to allow for a third party or an individual to contribute towards the NHS assessed (primary healthcare) care needs – including accommodation – which must be fully funded by the NHS commissioner including specifically, where a service user is eligible for funding under Continuing Healthcare legislation or Section 117 of the Mental Health Act.
Share your experience with top-up fees.
Tip no. 21: Appealing A CHC Funding Decision, Not To Grant Or To Withdraw Funding
Tip no. 23: Attending the Multi-Disciplinary Team meeting – some useful guidance
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My mother-in-law (MIL) was being cared for in her own home. The local authority did not, in my opinion, assess her needs fully and fairly. Each assessment took an inordinate amount of time and effort and barely covered her actual needs. As a family, we chose to use her own money to engage her personal assistant for more hours than she had been ‘awarded’ by the Social Services assessment. I, and other family members were constantly required to provide additional hours of care and interventions outside of the normal care hours. Her PA was backed up by additional agency care to cover for holidays. On 2 occasions the LA refunded an amount of money equal to the cost. of all the ‘extra’ care my mother-in-law had been paying for herself. This was done without any detailed explanation other than ‘refund of overpayments following financial review’.
When her care needs became too much to cope with in her own home, because she was continually at risk of falls etc 24/7 if left alone, we asked that she be assessed for 24hr care in a care home.
This is where things got a little muddied. I knew that if my mother-in-law was assessed as needing 24hr care, then it was the duty of the SS/LA to find a suitable place that could meet those needs. However, this placing did not have to be anywhere local if there was no local places available.
She had been recently awarded some respite care in a local care home in order that it would provide care cover whilst her PA was on annual leave. She was awarded 4 weeks in total and had taken two weeks of that very successfully just recently. When discussing our urgent request for 24hr care, the assigned social worker suggested that she might first take up the 2 weeks of unused respite care as there was spare capacity available immediately in the care home where she had previously stayed. We had been very happy with this care home, although we had to pay a significant but not extortionate top-up fee for her previous stay.
I argued that it would not be economical for her to take this respite care, as her PA had no remaining annual leave and would therefore need paying whilst ‘laid off’ for 2 weeks.
The SW suggested that if 24hr care was required my mother-in-law may be able to continue with a full time placement at the same care home without having to return home. This raised many questions.
When could we give the PA notice? What would be the financial implications?
Would the placement be seen as her ‘choice’ and therefore requiring any top-up payment to be made? Or, would it be seen as a LA placement requiring no top up. My understanding was that for 24hr care needs, the LA has a responsibility to offer ‘a placement’ somewhere and that the placement would therefore not require any top-up fee. Under normal circumstances, following assessment of 24hr care needs, a number of alternatives might be offered by the LA, including placements quite some distance away in other authorities. By accepting the respite I didn’t want to be making an ‘expressed choice’ of care home for my mother-in-law, which would bypass any ‘placement offer’ process. Nevertheless, this is what happened due to wider family input and SS pressure. The care home enquired who would be responsible for top-up payments and insisted a form be signed before admission, which was signed by a family member.
I decided to challenge the LA, asking why a top-up payment was relevant when we had not had the option or offer of an alternative placement from the LA, even though my MIL was already in respite care. This respite had also been extended by an addition 4 weeks whilst the assessment was on-going and the placement had not been made officially permanent. This meant that we were still having to pay the PA as we could not risk putting her on notice until we knew that my MIL would not be returning home. We also had all her normal home expenses to pay just in case she was turned down for 24hr care. The 24hr are package was eventually agreed in writing and the placement made permanent.
12 months on, it seems that, although not specifically acknowledged in any written response, that in response to my complaint my MIL now has no top-up fee to be paid by her family. We have no been asked again, who is responsible for top-up fees and have not received any invoices other than the one for during her initial 2 week respite period. This has been a huge saving for family, as top-up fees can not be paid by the client themselves when receiving LA funding.
My understanding appeared to be correct. ‘If the local authority can only offer a placement to meet care needs at a home that requires a top-up fee, then the LA is responsible for covering that fee, or obtaining that placement without the top-up being imposed.’
Question from Maureen: Thank you for the informative article. I’m just a bit unclear about Top Up fees. My mum has been in a Derbyshire Care Home for 4 years. The local authority pays most of the Care Home fees as my mum had insufficient personal funds, but my brother and I have always paid Top Up fees of £200 a month as the LA contribution didn’t cover the full cost of the fees. As LA’s set a limit on what they’ll pay, I would be surprised if they’d pay the Top Up. I’d appreciate clarification.
As far as I am aware, the LA has a responsibility to offer at least one placement that does not involve any top-up fee. Did they offer you such a placement? It may not have suited your choice for your mum but, nevertheless, should have been on offer.
If you subsequently chose an alternative, then you would be liable for any top-up fee payable. The bottom line is that there should always be a ‘No top-up option’ offered following an assessment concluding a need for 24hr care.
Question from Gaynor: My mom is in a nursing home has been for 18 months…she’s on EMI ward …and receives FNC. ..She also pays £138 a week and my dad pays £50 top up fee …third party ….my mom’s deteriorating fast now she has vascular dementia. ..copd ..and recently been diagnosed with a tumor on her lung …looking for advice here …what is fast track ? ..should she be paying this much ….she dosen’t have a SW anymore that stopped when she went into care ….
If your mum needs full-time ‘nursing care’ to meet medical needs, then she should have a CHC review that could lead to ALL her care costs being met by the NHS.
It can also be backdated if you can prove when these NHS needs first began.
Question from Denise: Mum has NHS CHC and for three years I have only paid for her hair & chiropody. In Feb this year the care home wrote to me and said I must pay a further £150 per week for “Lifestyle Choices” £100 for the privilege of being in a specific market town and choosing this nursing home. The further costs were for random items such as £4 per week for a TV in her room – its Mum’s TV and electricity is free, £5 per week for an occasional glass on wine or sherry – mum is 96 and does not drink and so on. Up until a year ago, mum used to stay in her room with her TV on all day – she didn’t want to go downstairs with the ” old people”. Due to her dementia increasing , she forgot she couldn’t walk and was found three times on the floor. I was told she must come downstairs to stop this and prevent a serious accident. Surely the fact that she was brought downstairs is a care issue, so the various entertainments she has ( not many!) are part of the care package. The NHS say not.