Hope for clarity as risk report into Tayside's lower chemo doses published

In the past week, a number of consultants have spoken out anonymously to defend the practice - now reversed - of administering 75-80mg doses of the drug Docetaxal to breast cancer patients in Tayside compared to the 100mg standard applied by health boards in the rest of Scotland, arguing that the higher dose was "unacceptably toxic" and that a reduced dose was actually beneficial.

Read more: Fourteen breast cancer deaths investigated amid Tayside chemotherapy outcry

One complained that oncologists had been "thrown under the bus" as NHS Tayside's senior managers rushed to apologise to patients in the wake of a critical report on April 1 by Healthcare Improvement Scotland, while another insisted that lower Docetaxal doses have been "used in hundreds of patients safely and effectively in high-quality clinical trials for many years".

Sifting the fact from the furore is crucial, most of all for the patients affected and for loved ones bereaved by breast cancer.

Of the 304 women given the lower chemotherapy doses at NHS Tayside between December 1 2016 and March 31 2019, 14 have since died.

Their individual cases are being reviewed by an independent expert, commissioned by NHS Tayside, to advise whether the lower Docetaxal could have harmed their chances of beating the disease. Those findings will be shared, privately, with their families.

Separately, the Scottish Government is set to publish its own risk assessment at 2pm today outlining the advice of independent experts in relation to the general policy of administering lower Docetaxel doses.

Key will be the probability of relapse: was the benefit of reducing potentially serious side effects such as febrile neutropenia - an infection occurring while the white blood cells are low, weakening the immune system - outweighed by the potential for patients' cancer to spread or return because their treatment had been less aggressive compared to patients in other parts of Scotland?

Read more: Poor management culture at NHS Tayside 'in a league of its own' says Shona Robison 

Medics have insisted that outcomes for breast cancer patients in the Tayside region in relation to tumour eradication, relapse and survival are in line with other parts of Scotland, regardless of the different approach taken to treatment.

We will have to see whether that is borne out by the statistics, and it may still be too soon to tell: most cancer measures are based on five- year timescales from the end of treatment.

Meanwhile, Health Secretary Jeane Freeman did not pull any punches in her criticism of NHS Tayside's decision to axe a dedicated helpline for people affected by the breast cancer crisis just a week after it launched.

“That’s just wrong,” she told local radio station, Tay 2.​

Ms Freeman added: “People take time, you need time to process. You don’t have immediate questions necessarily – you may have immediate questions that you get answered and then a few days later you think of something else, and you want an answer to that too.

“Our health service and NHS Tayside should be open to answering those questions for as long as people have them because this was not an acceptable situation."

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For many of the women affected, the lack of transparency is equally important. In its review, Healthcare Improvement Scotland said Tayside breast cancer oncologists defended the decision not to make patients aware that its dosing regime varied from other health boards because it was, in their view, "non egregious".

Lee Dennis, one of the 304 women treated who now runs the NHS Tayside Cancer Care Support Group, said patients have a “right to be informed, listened to, and to have their decisions respected”.

She said: “At NHS Tayside, this clearly was not the case because we breast cancer patients were not provided with fully informed consent about what our dosages would entail and how they differ from other cancer centres in Scotland.

“The situation has made many patients question the decisions being made by their doctors and what information they are not being told about.”

To date, NHS Tayside has insisted that the expert guidance it has received indicated that the risk to patients was low.

Ashleigh Simpson, Policy and Campaigns Manager (Scotland), Breast Cancer Care and Breast Cancer Now said: “It’s extremely concerning that the helpline has been closed.

"It is absolutely essential that patients affected and their families are given the support and care they need at this distressing time, and we urge NHS Tayside to reopen the helpline as soon as possible.

“Patients must be able to count on receiving high quality care no matter where they live in Scotland.

"It's essential that patients are given the information they need to allow them to make an informed decision about their care in partnership with their clinician, and that they are fully consulted on the benefits and risks of all parts of their treatment.

“We now await the imminent publication of the Immediate Response Group’s risk assessment report to fully understand the impact that using a lower dosage of chemotherapy may have had on patient care.”

A spokeswoman for NHS Tayside said: “We can confirm that we have now been in contact with all patients affected to offer them an appointment with an oncologist, and all but 13 of those who want to take up the offer of an appointment have already been booked in to a clinic.

"We have written again to those 13 patients and are awaiting their response.

“However, we have taken on board the fact that some patients may have taken a period of time to read the report and consider its implications for them and their families.
“That is why we have arranged for the NHS Inform information line to be reinstated. This will be available from noon on Tuesday, 16 April 2019 until Tuesday, 30 April 2019.

"The number is the same as before: 08000 858 531 and it is open from 8am to 10pm Monday to Friday and 9am to 5pm Saturday and Sunday.

“Patients can also still contact the NHS Tayside Complaints and Feedback team on 0800 027 5507.

“We understand that this remains a distressing time for patients and their families and we would like to apologise again.”