Primary care trusts must communicate with patients more clearly about exceptional case decisions, the Picker Institute is demanding.
In a statement responding to Professor Mike Richards' inquiry into co-payments, Picker called for reform of exceptional case handling, saying there was a need to "improve the PCT decision-making process as a whole".
Its comments follow high-profile cases of patients disputing PCT decisions not to fund treatments that the National Institute for Health and Clinical Excellence has rejected.
Picker, which had originally decided not to respond to the review because of its short timescale, said PCTs should harmonise and update their knowledge, review the composition of exceptional case panels, use a "common nomenclature" to aid transparency and, where possible, use recommended standard decision-making procedures for exceptional cases. Decisions should be shared on a database and viewed as possible precedents.
The proposals echo information sharing systems under consideration by PCT public health leads.
Picker head of policy and communications Don Redding said: "I'm not sure patients understand [the process], that it's transparent. You get different terminologies in different places."
He said where PCTs had made similar decisions, this evidence should be drawn on. But he had doubts about using PCT networks to achieve information sharing, saying that while it could be done in principle, the institute was "yet to see a model that is convincing".
Picker is also calling on the Department of Health to ensure that "customer care guarantees" are extended to patients making exceptional case applications.
NICE's role in providing information to the public should be boosted and backed with more resources and a tariff should be drawn up for specific top-up treatments and associated costs, it said.
A fine balance
NHS Confederation PCT network director David Stout said reducing the variation in PCT decision-making might improve public perceptions, but he warned: "You have to balance logistics and economies of scale with making decisions as close as possible to the patient."
Meanwhile, the Faculty of Public Health has warned in its own review submission that allowing NHS patients to make top-up payments for treatments not funded by the NHS would reduce the credibility of the health service and undermine its core principles.
The faculty said: "Those treatments which are considered by commissioners to be of low priority, or to represent poor value for money for the local NHS, are likely also to represent poor value for money for patients.
Last week, the Welsh and Scottish governments both announced reviews of funding of drugs not available on the NHS.