BORDERS health chiefs this week publicly reassured cancer patients that every request for exceptional funding for treatment is considered thoroughly.
The pledge comes in response to a new report by the Rarer Cancers Forum which claims 200 Scottish cancer patients have been left to die over the last two years, after seeing their last-ditch plea for life-extending treatment rejected by the NHS.
The report, Exceptional Scotland?, details how nearly 1,300 patients across Scotland have been forced to face the NHS’s exceptional cases committees in the last two years in order to justify receiving their cancer treatment – proportionally twice as many as in England. The 200 who saw their requests denied have been forced to go without potentially life-extending treatments – or, says the forum, pay ‘top-ups’ themselves of 21,000 each.
The findings were revealed under Freedom of Information requests sent to every NHS board in Scotland, which uncovered striking variations in the proportion of pleas rejected in different areas.
Out of Scotland’s 14 health boards, NHS Borders was one of only four which approved all of the applications it received for exceptional funding in the last two years – in the Borders case this was just five.
However, local health bosses still came under fire for the way applications are handled.
NHS Borders is one of only five area boards which have no written protocols for determining exceptional case requests, which, says the forum, makes it difficult for patients to have confidence that decisions are being made in a transparent way.
Secondly, while exceptional case decisions are usually taken by NHS boards through committees, which may include relevant clinical experience, in NHS Borders, decisions are taken only by executive members of the board.
Forum spokesman Bill Morgan told us: “If a board has no written protocols to govern how exceptional cases are processed, it makes it very difficult for a doctor or a patient to build a case for approval.
“NHS Borders has neither written protocols nor a process to develop them. Secondly, all exceptional case applications are determined by the executive team.
“Although at NHS Borders this comprises a medical director and a director of nursing, fundamentally, the board is not the right place to make these decisions. The medical members are outnumbered by the non-medical members. These non-medical members may not have any clinical experience at all and the medical members may not have any cancer experience.
“There are no lay members or patient representatives on the executive team. It is not balanced and it is for signing off on budgets, it is not necessarily about patients.
“The medics may have no experience in cancer care – so do they take evidence from a cancer consultant?
“Notwithstanding the fact that all five applications in the Borders were approved, I would not want to be a cancer patient in NHS Borders area. It is not designed with the patients at heart.”
There are three main circumstances in which doctors may need to launch exceptional case requests on behalf of their patients.
Firstly, where an NHS Board chooses not to fund a treatment routinely which has been recommended by the Scottish Medicines Consortium (SMC), perhaps because alternative treatments exist.
Secondly, where a doctor wishes to prescribe a medicine to a patient for use outside that medicine’s licensed indication (meaning that the SMC cannot issue guidance on it).
And thirdly, where a treatment has not been recommended for use in the NHS, but where a doctor believes the patient could derive an ‘exceptional’ clinical benefit if they receive it.
The forum is now recommending a 10-point plan of action.
NHS Borders told TheSouthern yesterday that all requests for exceptional funding are reviewed by the NHS Borders executive team in anonymised form.
This team includes the director of public health, who is the director responsible for this process, the medical director and the director of nursing & midwifery and that, as senior clinicians, they ensure they have all the relevant clinical information necessary to reach a decision on each case.
Dr Alan Mordue, acting director of public health for NHS Borders also told us: “NHS Borders receives very few requests for exceptional funding for cancer treatments, and not all of these requests are for specific drugs. In fact, only one of the five cases cited above was a request for a drug.
“Clearly it is important that we have all the relevant clinical information and that we take a balanced view of each individual case.
“We think our current procedures allow for this, but we shall certainly be looking at the report’s findings and recommendations in respect of our own processes, and in the meanwhile we would like to reassure our patients that every request for exceptional funding is considered very thoroughly.”