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Families routinely wait years for a Continuing Healthcare decision to be reviewed. Some of that delay is structural. A surprising amount of it is not — and knowing which is which is the difference between a case that moves and one that quietly sits in a queue.
There is a particular kind of exhaustion that comes with a Continuing Healthcare appeal. Not the exhaustion of the care itself, which families expect, but the slower grind of waiting for a decision about a decision. Cases reported in the press describe waits of four years or more for a single review to conclude. That is not unusual. It is close to normal.
What follows is an honest account of where the time actually goes, and where a family can realistically shorten it.
Almost every appeal stalls here first. A Continuing Healthcare case is decided on contemporaneous care records — daily notes, care plans, risk assessments, medication charts, behaviour charts. A care provider is expected, on reasonable request, to produce current resident records within around two weeks and archived records within around four.
In practice, records arrive late, arrive for the wrong period, or arrive incomplete: blank attachments, a care plan with headings and no narrative, no historic risk assessments. Each round of chasing adds weeks. Where a home has changed hands or replaced its record system, it can add months.
Local resolution is handled by the Integrated Care Board, and volumes are high. A retrospective claim covering several years of care generates a substantial evidence bundle, and each one has to be read by a reviewing nurse before any meeting is scheduled.
Reviews need the right people in the room, often including professionals who were involved at the time. Coordinating clinical diaries is genuinely difficult, and one cancellation can push a case back a full quarter.
If local resolution does not settle it, an Independent Review Panel convened by NHS England adds its own timetable on top.
Delay is not neutral. Every month a case sits, the evidence gets weaker: staff move on, systems are replaced, and the people who could explain an entry are no longer there to ask.
A vague request produces a vague response. A schedule that names each document type and the exact period sits much harder to answer partially. We ask specifically for daily notes, original and evaluated care plans, dated risk assessments including Waterlow and MUST, medication administration records, behaviour charts, continence and repositioning records, professional visit notes, and any mental capacity or Deprivation of Liberty assessments.
This is the single most useful procedural step, and almost nobody takes it. Ask the Integrated Care Board for a category-by-category schedule of what it has received and what remains outstanding.
It costs nothing, it is entirely reasonable, and it changes the footing of the appeal. A Board that has committed in writing to what is missing finds it considerably harder to determine the case without it.
Where records are outstanding, an ICB may still propose to proceed. Our position in those circumstances is straightforward: no substantive determination should be made on a knowingly incomplete evidential record while relevant, identifiable records remain reasonably obtainable.
Put that in writing, early. It is far easier to prevent a premature decision than to unpick one afterwards.
Appeals asserting that every domain should be higher get discounted, and they take longer because the Board must address each claim. A submission that identifies the two or three domains where the recorded score genuinely conflicts with the contemporaneous evidence — and explains how those needs interact — is both more persuasive and quicker to determine.
Every request, every promised date, every missed one. It is tedious, and it is the thing that turns “we have been waiting ages” into a documented account of unreasonable delay — which is what an escalation or an Ombudsman complaint eventually rests on.
While you wait, remember that the two routes are different. An appeal against a decision must normally be brought within six months of the decision letter. A retrospective claim, for a period where nobody ever assessed eligibility, has no fixed deadline.
You cannot use the retrospective route to revive a missed appeal. Families lose the appeal route to this more often than to anything else.
If a case has stalled beyond anything reasonable, the delay stops being background and becomes a ground in its own right. The route is a formal complaint to the Integrated Care Board, and where that fails, the Parliamentary and Health Service Ombudsman, which considers maladministration including unreasonable delay.
That is a real remedy, not a threat to brandish early. But a well-kept chase log makes it a credible one, and Boards are aware of that.
You are unlikely to turn a two-year appeal into a three-month one. The structural delays are real and they are not going away while volumes stay where they are.
What you can do is stop losing months to the avoidable causes: incomplete disclosure, unfocused submissions, and letting a Board decide on a record everyone knows is missing pieces. In our experience that is where most of the recoverable time sits.
Solicitor since 2012 and Principal of Christodoulos Ltd, which specialises in NHS Continuing Healthcare claims and appeals. SRA 809508.
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