Unlawful care home top-up fees: what every family needs to know
When a loved one requires long-term care, families are often thrown into a world of assessments, paperwork, and difficult decisions. Alongside the emotional toll of seeing a parent or partner become increasingly dependent, many families face the financial burden of rising care home fees.
It’s not uncommon for us to speak to people who have spent their life savings, sold their family home, or borrowed money simply to pay for care. One area that frequently arises is so-called “top up fees”, extra charges that care homes request from families.
But here’s the truth: if your relative qualifies for NHS Continuing Healthcare (CHC) funding, these top-up fees are usually unlawful. NHS National Framework guidance is clear that once CHC funding is in place, the NHS must pay 100% of your relative’s care costs, including accommodation. Families should not be asked to contribute. Yet many are.
What are top-up fees?
A “top-up fee” is an additional payment charged by a care home to the resident on top of what is already being paid by their local NHS Integrated Care Board for CHC funding.
These fees are sometimes framed as “contributions” (however disguised) towards the cost of care or as the price of securing a bed in the home. Families, desperate to secure good care for their relative, often feel they have no choice but to agree.
Top-up fees might be justified by the care provider as covering lifestyle choices, things like:
- A larger room or better view.
- “Premium” services, such as more luxurious furnishings.
If a family chooses these extras voluntarily, then a top-up may be legitimate. But if the fees relate to the core healthcare needs that your relative has been assessed as requiring, then charging them is unlawful.
What the law says
The National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care (2018) is clear on this point. Paragraph 180 states:
“NHS care is free at the point of delivery. The funding provided by Clinical Commissioning Groups (CCGs) 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.”
In other words:
- If your relative has been assessed and awarded CHC, the NHS must pay the FULL cost of meeting those assessed needs.
- It is not lawful for care homes (or anyone else) to ask families for additional contributions to meet those same needs.
Top-ups can only apply where the family makes a personal choice for something over and above the assessed needs, for example, choosing a more expensive room.
Why are unlawful top-up fees so common?
Despite the National Framework’ clarity, thousands of families in England and Wales are still paying unlawful top-up fees. There are several reasons for this:
- Lack of awareness – Most families have never even heard of NHS Continuing Healthcare until they stumble across it online. The NHS doesn’t advertise its availability, and care homes rarely explain it. Families are often told “this is just how it works” when asked to pay more.
- Confusing contracts – Care home contracts are often lengthy, complex, and full of jargon. Families may sign without fully realising what they are agreeing to, particularly during a stressful admission process.
- Power imbalance – When you’re looking for a bed for a loved one, you feel you have no bargaining power. If the care home says “you need to pay a top-up,” families are reluctant to challenge it for fear of losing the placement.
- Financial pressures on the NHS – Integrated Care Boards are under immense pressure to save money by “rationing” CHC funding or downgrading assessments to reduce costs. As a result, care homes sometimes try to make up the shortfall by charging families.
- Widespread misunderstanding – Even professionals within the care sector often misunderstand CHC rules. We regularly see social workers, care managers, and even NHS staff giving incorrect advice to families.
Real families, real impact
At Farley Dwek, we’ve supported and advised numerous families who have been wrongly charged top-up fees. The stories are always heartbreaking:
- Families selling their home to cover care fees that should have been fully funded.
- Children pooling their savings to keep a parent in a home they had grown comfortable in.
- Relatives left wondering if they’ve been taken advantage of, often after a loved one has died.
One of the biggest injustices is that many people only learn about CHC funding after it’s too late, after they’ve already paid tens or even hundreds of thousands of pounds. By then, they are not only grieving but also left with anger and confusion about whether those fees were ever rightfully owed.
The link to NHS Continuing Healthcare – the “best kept secret”
The issue of top-up fees cannot be separated from the wider problem of NHS Continuing Healthcare itself.
CHC funding exists to cover the full cost of care for individuals with a “primary health need.” Yet it has often been described, including by us at Farley Dwek, as the NHS’s “best kept secret.”
Why? Because:
- It is rarely explained to families at the point of need.
- Assessments are complex, subjective, and often inconsistent.
- Appeals are long, stressful, and confusing.
The result is that many people who are entitled to CHC funding never receive it. And even when they do, they may still be unlawfully asked to contribute through top-up fees.
This creates a double injustice: first being denied funding, then being asked to pay extra even when funding applies.
What you can do if you’re paying top-up fees
If you are currently paying, or have previously paid, top-up fees, here are some practical steps to take:
- Check your relative’s CHC status
- Review the care contract
- Ask for clarification in writing
- Challenge unlawful fees
- Seek specialist advice
How Farley Dwek can help
We know how overwhelming this process feels. That’s why we offer a dedicated Reclaiming Top-Up Fees Service.
Our team can:
- Review your care home contract and CHC funding package.
- Identify whether top-up fees were lawful.
- Pursue reimbursement of unlawful fees on your behalf.
- Provide advocacy and representation at any stage of the CHC process.
We also provide a range of complementary services, including:
- Free Initial Assessment – we give you an honest opinion about your prospects of success.
- Appeals Representation – if you’ve been turned down for CHC, we can handle the complex appeals process for you.
- Retrospective Claims – if your relative has already passed away, we can still pursue reimbursement of care home fees wrongly charged.
Our approach is simple: we take the pressure off families, so you can focus on caring for your loved one and spending precious time together.
Why it matters
This isn’t just about money – although the sums involved can be life-changing. It’s about fairness, legality, and peace of mind.
Families should not be forced into financial hardship or to sell homes unnecessarily when the NHS is legally responsible for meeting those care costs. Older people deserve dignity in later life, and families deserve honesty and transparency from the system.
Don’t pay what you don’t owe
If your loved one has NHS Continuing Healthcare funding in place, you should not be asked to contribute towards their assessed healthcare needs. Top-up fees in these circumstances are unlawful.
Unfortunately, many families are still being charged, either through confusion, pressure, or lack of awareness. That’s why it’s so important to challenge and, where possible, reclaim what’s rightfully yours!
At Farley Dwek, we’re committed to supporting families through this process. Whether you’re facing a current top-up demand or want to reclaim past fees, we have the expertise to help.
Take action today. Call us on 0161 272 5222 or email help@farleydwek.com for a free initial discussion.
You don’t have to fight this battle alone. If the NHS is responsible for your relative’s care, we’ll make sure they pay. Not you.