Challenging an NHS Continuing Healthcare Refusal

A refusal of CHC is not final. The challenge route has three formal stages, and you must normally work through them in order:

1. Local review by the ICB. Ask the Integrated Care Board in writing for a local resolution review, normally within three months of the decision letter. Ask at the same time for a copy of the completed Decision Support Tool, the checklist, and the minutes of the multidisciplinary team meeting — you are entitled to these and you cannot argue the case without them. The review should be completed within three months.
2. Independent Review Panel (IRP). If local resolution does not settle it, request an IRP through NHS England. The panel is chaired independently of the ICB and reviews both the process followed and the eligibility decision itself.
3. Parliamentary and Health Service Ombudsman (PHSO). Once the IRP is exhausted, the PHSO can investigate maladministration — a failure to offer an assessment at all, use of an incorrect version of the DST, unreasonable delay, or a failure to apply the National Framework properly. The PHSO can also investigate retrospective claims that were improperly refused.

In a small number of cases where the ICB has acted unlawfully — rather than merely wrongly — judicial review is available. It is a remedy about the legality of the process, not a second opinion on the person's needs, and it carries costs risk; take specialist legal advice before going down that road.

Reviews are won on documentary evidence about day-to-day reality, not on how strongly the family feels. Assemble:

• Care home daily records and turn charts — these show frequency and unpredictability far better than any summary, and they are contemporaneous.
• Incident logs — falls, choking episodes, aggression, absconding, pressure-area breakdown.
• GP and specialist letters written for the review, addressing the four characteristics directly rather than restating a diagnosis.
• Medication administration records, particularly where symptom control is being varied frequently.
• Your own diary of a typical week, including nights.

Then attack the reasoning, not just the scores. The most common winning argument is that the multidisciplinary team applied the Decision Support Tool mechanically — adding up domain levels and stopping there — instead of standing back and asking whether, taken as a whole, the nature, complexity, intensity and unpredictability of the needs add up to a primary health need. The National Framework requires that overall judgement, and a panel that never made it has misdirected itself. Other recurring grounds are that the family was excluded from the MDT, that a domain was scored from an out-of-date assessment, or that needs were treated as "social" simply because a care assistant rather than a nurse happened to be meeting them.

The NHS Constitution applies throughout the CHC process. During an assessment or a review you have the right to:

• Be treated with dignity and respect, and to have your wishes considered
• Be given information in a way you can understand, including an interpreter or communication support
• Have a family member, carer, or advocate present at any meeting
• Complain about the process and receive a written response under the NHS Complaints Regulations 2009
• Have the process completed within National Framework timescales — typically 28 days from checklist to decision

Independent advocacy

If the person being assessed lacks mental capacity and has no family or friends able to represent their interests, an Independent Mental Capacity Advocate (IMCA) must be instructed under the Mental Capacity Act 2005 for serious decisions including care placement. Failure to arrange one in those circumstances is an error of law and a ground of challenge in its own right. Where the person has capacity but the family needs help, a statutory advocate may be available under the Care Act 2014, and free NHS Complaints Advocacy — from organisations such as POhWER and VoiceAbility — can help gather evidence, attend meetings, and draft submissions. The CHC Alliance offers free guidance specific to CHC.

Integrated Care Boards commission CHC within the wider Integrated Care System, and NHS England oversees them against the National Framework for NHS Continuing Healthcare (last updated 2022). Where an ICB is failing systematically rather than in one case — using an inadequate checklist, routinely excluding families from MDTs, or letting decisions drift far beyond 28 days — that is a matter for NHS England's regional office, and raising it there can be more effective than another individual appeal.

If funding is being withdrawn rather than refused

The ICB must reassess eligibility at least annually and whenever needs change significantly. If it proposes to reduce or withdraw an existing award it must give its reasons in writing, and the same three-stage challenge route applies. Crucially, the care package must not be reduced or stopped while the review process is running, unless there is an urgent safety reason to act sooner. If a package is cut off mid-review, say so in writing immediately and escalate — that is a separate and more serious failing than the eligibility decision itself.

Retrospective claims

Where care was paid for privately during a period when CHC should have been in place, a retrospective claim can be made through the NHS local resolution process, in some circumstances reaching back to 2012. These are evidence-heavy and slow; specialist CHC solicitors, many working on a no-win no-fee basis, can advise on whether a claim is worth running.