Navigating the Maze of NHS Continuing Healthcare: A Practical Guide for Families

Caring for a loved one whose health needs are escalating can be overwhelming — not just emotionally but financially and logistically. The journey through the world of funding, assessments and support under NHS Continuing Healthcare (CHC) is fraught with uncertainty. In this blog, we explore how you can make sense of the process, draw on expert guidance such as the many articles on our website and stay empowered along the way.

Understanding CHC: What it is and why it matters

At its core, NHS Continuing Healthcare is a package of care arranged and funded solely by the NHS for individuals aged 18 or over who have been assessed as having a “primary health need”. In simpler terms: if a person’s healthcare needs are such that they need support beyond what might ordinarily be the remit of local authority social care, the NHS funds them entirely. You can find official guidance here: NHS – What is NHS Continuing Healthcare It’s important because the cost of long-term care is rising, and families can quickly get caught off-guard.

Common pitfalls families face (and how to avoid them)

There are many issues that cause families problems – from misunderstandings about eligibility to top-up fees in care homes (see Act Now If Your Care Home is Charging Unlawful Top-Up Fees!). Here are three valuable take-aways:

• Know your eligibility status early – Many families believe that because a person is “very ill” they must qualify for CHC; but the legal test revolves around a primary health need and the interplay with social care. The Government’s National Framework sets this out.
• Understand the assessment process – After the Checklist, an MDT (Multi-Disciplinary Team) uses the Decision Support Tool (DST).
• Be aware of cost traps – For example, care homes charging “top-up” fees when a resident is already funded via CHC can constitute unlawful practice or result in unfair cost burden for families.

Taking control: The role of the personal health budget

Another key development is that individuals eligible for CHC also have a legal right to a Personal Health Budget (PHB). This is an amount of NHS-funded money that enables more personalised support. See the guidance here What is a Personal Health Budget? And here Make Sure You are Offered a Personal Health Budget (PHB)! The key benefits:

• It gives you choice and flexibility: Rather than “one-size-fits-all”, you tailor your care and support plan around what matters.
• You retain oversight: you work with your NHS team to plan how money is used.
• It’s an option, not added cost: It does not mean extra NHS money — it’s re-directed for more personalised use.

Practical steps for families: an action-plan

Drawing together the above, here is a suggested “mini-roadmap” for those about to embark on this journey:

• Check eligibility and initiate the process Ask your local Integrated Care Board (ICB) about CHC: confirm that your loved-one’s case is being assessed (Checklist, MDT, DST). See this article Tips and Advice for Success at Your CHC Review for what to prepare (even though that is post-award review it still gives insight).
• Gather evidence and documentation Document the full scope of health and care needs: nursing, therapies, tasks of daily living, behavioural issues. The National Framework emphasises the need for clinical documentation. External resource: Age UK Factsheet – NHS Continuing Healthcare and NHS-Funded Nursing Care.
• Attend the MDT and engage fully Understand what questions will be asked; see What Happens at the MDT Meeting? above. Proactively bring your evidence and ask for feedback.
• Consider a Personal Health Budget If eligible, ask for a PHB. Explore how the budget could be used to support your family member’s goals — whether at home, in supported living or in another setting.
• Challenge decisions if necessary If the outcome of the MDT is negative, you can seek a review or appeal. The Parliamentary and Health Service Ombudsman explains the complaints route here: How we can help with complaints about continuing healthcare funding Also see our article Appealing the MDT Decision – so you’ve been rejected CHC?
• Plan for the future CHC funding isn’t static — reviews occur, situations change. Budget for the mid-/long-term: ask about likely scenarios such as deterioration, need for specialist care, or home adaptations. This blog Tips and Advice for Success at Your CHC Review delves into this.

Why expert advocacy makes a difference

Working with an advocacy or specialist advisory service like the one offered by Farley Dwek Solicitors can make a tangible difference. Why?

• They understand the system: The CHC landscape is specialised; they translate the policy into what families encounter on the ground.
• They see the patterns: From unlawful top-ups to missed PHB offers, they identify common failings and show you how to respond.
• They give you confidence: Knowing your rights strengthens your voice when engaging with the ICB or care provider.
• They provide up-to-date insights: With a wealth of information available on their site and over the phone.

Final thoughts: Empowerment through knowledge

If there’s one takeaway, it is this: you don’t have to accept “the way it’s always been done”. The CHC process is legally framed, there are rights in place (such as the PHB), and with the right preparation you can better navigate the system and protect your loved-one’s interests. This blog is an excellent starting point for families seeking guidance; paired with official sources such as the NHS page on CHC and Age UK factsheets it becomes a robust tool-kit for understanding and action. Above all: stay informed, stay organised, and don’t shy away from asking questions. With careful preparation and informed engagement, families can move beyond confusion and into clarity, securing the right support for those they care for.

Useful links

• NHS – What is NHS Continuing Healthcare?
• NHS – What is a Personal Health Budget?
• Age UK Factsheet – NHS Continuing Healthcare and NHS-Funded Nursing Care
• Parliamentary & Health Service Ombudsman – Complaints about CHC funding
• What Happens at the Multi-Disciplinary Team Meeting?
• Tips and Advice for Success at Your CHC Review