In a multidisciplinary team meeting for neuroendocrine cancer, a case comes up. The tumours have spread to the liver, and the specialists agree that selective internal radiation therapy could suit the patient. Then the discussion turns to a question no clinical guideline anticipates, which is whether the patient can pay for it privately. More than two years after NICE recommended the treatment, one of its leading clinical advocates says access in England still turns on that question.

The facts are simple. NICE recommended the therapy in May 2024 as an option for eligible patients, subject to standard clinical governance, consent and audit. NHS England does not routinely commission it for neuroendocrine tumours that have spread to the liver. A Hampshire charity, PLANETS, has gathered more than 49,000 petition signatures and is taking its case to Parliament.

The explanation lies in what NICE guidance obliges. The wording of the recommendation suggests interventional procedures guidance, which assesses safety and efficacy but carries no statutory funding requirement. A technology appraisal, by contrast, brings a duty to fund within three months. Patients, and many clinicians, reasonably read a positive NICE decision as a promise of availability. For this category of guidance, that reading is mistaken, and the resulting gap is a problem of public trust as much as of clinical access.

Commissioners have their own logic. Specialised budgets are finite, the patient population here is small, and each new commitment competes with others. Declining to fund one therapy can be defensible. A pattern of unfunded recommendations is harder to defend, because patients who cannot pay receive a different standard of care from those who can. A government that has promised to narrow health inequalities should find that outcome uncomfortable.

The timing sharpens the issue. NHS England is being absorbed into the Department of Health and Social Care, and responsibility for many commissioning functions is being redistributed. Transitions are when unowned decisions stall. A treatment awaiting a commissioning policy has no obvious sponsor, and each reorganisation offers a new reason to defer. The incoming leadership of whichever body inherits this portfolio should expect a backlog of recommendations that never acquired a funding route, and should audit it early.

Industry has a stake too. The parliamentary event on Monday is funded by Boston Scientific, which makes one of the SIRT devices. That is not disqualifying, since patient charities often depend on such support, and the clinical case stands on the evidence NICE reviewed. Policymakers should still weigh the advocacy with that funding in view. For life sciences companies the lesson is wider. The government wants the UK to be an attractive launch market, yet a positive appraisal that fails to translate into uptake weakens that pitch more effectively than any pricing dispute.

There are limits to the argument. The treating clinician himself says the therapy will not suit every patient, and a route to routine access would need to preserve specialist selection through multidisciplinary teams. The costs, the likely number of eligible patients and the audit requirements all deserve scrutiny before a policy is written. None of that explains why two years have passed without a clear answer either way.

The practical steps are modest. NHS leaders can map where recommended but uncommissioned treatments sit in their own systems and say plainly who decides. Ministers can require that every NICE recommendation, whatever its category, is followed by a published commissioning position within a fixed period, even if that position is a reasoned refusal. Patients can then at least know where they stand.

Two years of silence is itself a decision, and an expensive one for the people living through it. A health service that issues recommendations without owners teaches patients that guidance is advisory and that private means are the fallback. Whatever the merits of this particular therapy, that is a lesson the NHS cannot afford to keep teaching.

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