A Year in Review: Key Lessons from NHS Continuing Healthcare in 2025
As another year draws to a close, it’s a good moment to pause and reflect on what families navigating NHS Continuing Healthcare (CHC) have experienced over the past twelve months. For many, 2025 has been a year of challenge, learning, frustration — but also empowerment.
Here at Care to be Different, we have continued to shine a light on the realities families face when dealing with CHC assessments, reviews, appeals and funding decisions. Looking back across the year, some clear themes emerge: the importance of preparation, the value of understanding your rights, and the growing need for families to advocate confidently for appropriate care.
This round-up revisits some of the most important lessons from the past year and explains why they matter now more than ever.
Understanding the CHC process remains the biggest hurdle
One of the strongest recurring themes we have seen throughout 2025 is confusion around how CHC decisions are actually made. Despite clear national guidance, many families still come to us feeling bewildered by the process.
Articles from our archives such as 16 Useful Tips You Need to Know at the Beginning of Your CHC Journey continue to resonate because they strip the process back to essentials — explaining eligibility, assessments and the language professionals use.
This confusion is not surprising. The official National Framework for NHS Continuing Healthcare is lengthy and complex and, while it provides the legal foundation, it is not written with families in mind. You can find it on the Government website here:
The key lesson from 2025 is this: families who take time early on to understand the structure of CHC — particularly the difference between healthcare needs and social care needs — are far better placed to engage confidently with professionals later.
The MDT meeting: still a make-or-break moment
Another clear focus for us this year has been the Multi-Disciplinary Team (MDT) meeting, where eligibility decisions are shaped.
Our article: What Happens at the Multi-Disciplinary Team Meeting? has helped many families demystify what can otherwise feel like an intimidating process.
For many people, this is the first time they realise that eligibility is not based on a diagnosis alone, but on the nature, intensity, complexity and unpredictability of needs.
The NHS confirms that CHC is not condition-led but needs-led:
https://www.nhs.uk/social-care-and-support/money-work-and-benefits/nhs-continuing-healthcare/
One of the clearest takeaways from this year is that families who attend MDT meetings and are better prepared — with evidence, real-life examples and an understanding of the Decision Support Tool — are far more likely to feel informed and involved, regardless of the final outcome.
Appeals and reviews: challenging decisions is becoming the norm
Throughout 2025, we have also seen more families questioning — and challenging — CHC decisions. This is reflected in the continued interest in our article from our archives:
Appealing the MDT Decision – so you’ve been rejected CHC?.
Appealing a decision is not about being “difficult”; it is a recognised and lawful part of the system. NHS England guidance confirms that individuals have the right to request reviews and raise complaints where appropriate.
Where disputes remain unresolved, families can escalate concerns to the Parliamentary and Health Service Ombudsman:
https://www.ombudsman.org.uk/making-complaint/what-we-can-and-cant-help/how-we-can-help-complaints-about-continuing-healthcare-funding
A negative decision does not have to be the end of the road. Persistence and patience, supported by evidence and a solid understanding of the NHS Natio nal Framework, remains one of the most powerful tools available to families.
Personal Health Budgets: growing awareness, uneven practice
Another important theme we have explored this year is the growing awareness — but inconsistent implementation — of Personal Health Budgets (PHBs) for individuals eligible for CHC.
In our article: Make Sure You Are Offered a Personal Health Budget (PHB)! we highlight a crucial issue: many families are simply never told that PHBs are even an option!
According to NHS guidance, people eligible for CHC have a legal right to ask for a Personal Health Budget:
https://www.nhs.uk/nhs-services/help-with-health-costs/what-is-a-personal-health-budget/
Looking back over the year, one message stands out — choice and flexibility are still too often under-promoted.
Reviews, anxiety and ongoing uncertainty
CHC does not end with eligibility. Annual reviews — and sometimes earlier reviews — have remained a significant source of anxiety for many families throughout 2025.
Our blog: Tips and Advice for Success at Your CHC Review has been especially relevant this year, as many families tell us they feel under pressure to “prove” continued eligibility.
NHS guidance makes clear that reviews should not be used to remove funding without clear evidence of change, yet uncertainty persists.
Unlawful charges and top-ups remain a hidden issue
Sadly, 2025 has also shown us that unlawful charging practices — particularly around care-home top-up fees — remain an ongoing issue.
Our article: Act Now If Your Care Home is Charging Unlawful Top-Up Fees! continues to resonate because many families still assume such charges are unavoidable.
Government guidance is clear that where care is fully NHS-funded, individuals should not be asked to contribute towards core care costs for assessed healthcare needs.
Question charges, ask for clear explanations, and seek advice early.
Looking ahead: taking these lessons into the new year
- Knowledge really is power.
- Preparation consistently leads to better outcomes.
- Advocacy is not confrontation — it is participation.
- Families are not alone – we can support you.
As we move into a new year, we remain committed to supporting families with clear, practical and independent information.
Above all, 2025 has reinforced one simple truth: families who understand their rights are better placed to protect the care their loved ones care needs.
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