Emails show how clinical decision was reversed
Health board managers changed their minds about providing treatment to a patient with cancer after concerted pressure from the Scottish government, documents have revealed.
Emails released under freedom of information (FoI) laws show a flurry of urgent communications from, to and within NHS Grampian, including “multiple contacts” from the Scottish government and its chief medical officer. The interventions followed a newspaper article about a breast cancer patient who had been refused the medicine Kadcyla.
The drug, which costs about £90,000 a year, can help to prolong the lives of cancer patients but it has not been approved for use by the Scottish Medicines Consortium (SMC), which weighs up the costs and benefits of new treatments.
Individual health boards can sanction the use of drugs that are not cleared by the SMC if approved by a panel of senior doctors on clinical grounds after an individual patient treatment request (IPTR).
Earlier this year the NHS Grampian panel turned down Anne Maclean-Chang’s plea for her to be offered the drug.
That decision was reversed after Mrs Maclean-Chang, a palliative care nurse from Elgin who has had cancer for ten years, contacted the first minister’s office and her attempts to “crowdfund” the costs of the drug were highlighted in the Daily Record on the morning of September 15.
Heavily redacted FoI emails reveal apparently numerous contacts from the Scottish government and its chief medical officer regarding the original decision and the following outcry.
After a meeting of the NHS Grampian doctors’ panel, Nicola Sturgeon was able to tell first minister’s questions at Holyrood later that day that the decision had been overturned.
After being challenged about political intervention in clinical decisions, she told MSPs: “This is not a case of me and my government intervening; it is a case of the system operating to get the patient the drug that I agree she should access.”
The board only appeared to act, however, after the Scottish government contact. One clearly harassed official wrote: “I’ve had multiple contacts from SG [Scottish government] and CMO [chief medical officer] office concerning this case — could you call me as soon as you are able to.”
Another email seeks an “urgent update” from the NHS Grampian chief executive, Malcolm Wright, about the health board overturning its original decision to prescribe Kadcyla.
A press statement issued that day by NHS Grampian — after the decision had been reviewed by the board’s medical director, Nick Fluck — said: “The medical director for NHS Grampian reviewed the individual patient treatment request decision relating to the provision of Kadcyla for this patient [Mrs Maclean-Chang].
“He spoke with panel members and the patient’s treating clinician to understand the context and circumstances. Having considered the unusual circumstances of this case the medical director sanctioned the use of Kadcyla in this particular case.”
Emails show, however, that the statement appears to have been edited to omit references to the original decision of the IPTR panel to refuse Mrs Maclean-Chang, after following the correct procedures.
A position statement from the medical director to the board says Kadcyla was refused “as there were a number of alternative treatments available for the patient’s condition”.
The press statement also omits a phrase used in one version which makes clear that the drug was now being granted on “compassionate” as opposed to clinical grounds.
In addition, the decision to overturn the original ruling was questioned internally the day after Ms Sturgeon’s announcement by an unnamed board member in an email to Laura Gray, NHS Grampian’s director of corporate communications and the board secretary.
It read: “From my viewpoint there is as much, perhaps more, need to be cognisant of the potential implications of political intervention in a clinical decision taken within the agreed national parameters, actually in any clinical decision.
“What happens to the next person to write to the press, how accountable can clinicians be if their professional judgment is challenged, etc.”
A Scottish government spokesman said: “Following correspondence to the Scottish government, officials contacted NHS Grampian to obtain further information about this case and the processes followed. NHS Grampian’s medical director reviewed the individual patient treatment request to understand the context and circumstances behind the original decision, and following consideration subsequently sanctioned the use of Kadcyla on clinical grounds in this instance.
“We’ve substantially increased access to new medicines, particularly for cancer, due to reforms in recent years. To build on this we will soon be publishing our response to Dr Brian Montgomery’s review of access to new medicines.”