Just 60% of primary care trusts and 35% of local health boards in England and Wales routinely use therapies recommended by the National Institute for Health and Clinical Excellence to treat blood cancer patients, a survey by UK charity Leukaemia Care has revealed.

Worryingly, the survey also found that just 23% of PCTs and 22% of LHBs are still only making Velcade (bortezomib) and MabThera (rituximab) available through Individual Funding Requests (IFR) – which are basically requests to fund an individual episode of healthcare that falls outside existing contracts - despite the fact Velcade was endorsed by NICE more than a year ago (MabThera received a green light last month), which suggests that a significant portion are simply not following the Institute’s guidelines.

According to the charity, the fact that these treatments are, in many cases, still only being made available to patients through IFS “reflects a significant failure of the current system and creates great uncertainty for patients who have a right to these treatments”, and it insists “there should therefore be greater recourse for patients going through the IFR process where NICE guidance already exists”.

In another illustration of the current confusion over when to make treatments available on the NHS, the survey found that 39% of PCTs in England and 30% in Wales are stumping up the cash for treatment with dasatinib, even though this treatment has been approved by the AWMSG for imatinib-resistant or intolerant CML but is yet to receive a green light from NICE. The expectation is that dasatinib should be much more routinely funded in Wales as it has been approved there, but the survey shows that this is not the case.

Leukaemia Care has voiced concern that PCTs are not responding to NICE guidance for haematological cancer treatments the same way they would to recommendations for other therapies. “Our greatest concern is that treatments which have been found to be cost effective by NICE are not always being made available to patients”, the group said in a statement.

In addition, the charity claims there appears to be “considerable confusion” about the procedures for making treatments available that are undergoing a NICE assessment, which, it says, is reflected in the “very wide number” of sources both PCTs and LHBs look to for advice. “This inconsistency and ambiguity about patient access to treatments is a very serious matter for patients with blood cancers where quick treatment is vital”, it stressed.

Plan of action
The report’s findings have prompted Leukaemia Care to draw up a five-point plan to help foster a more consistent and transparent approach to providing treatment across England and Wales.

Its suggestions centre on: the provision of a central reference point for guidance on new treatments; the speedy introduction of the NHS Constitution - which safeguards the right of patients in England NICE endorsed therapies; the introduction of a specific requirement to collect data on the guidance implementation; better guidance on the use of IFRs; and setting up procedures to record/collect data on the uptake of treatment ‘top-ups’.

On a more positive note, the charity did note that there had been “marked improvements” in the levels of care received by patients, and it welcomed the growing role of cancer networks in their advisory capacity to PCTs and the achievements of joint commissioning, which, it claims, “has vastly improved access to cancer treatments in a number of areas”.