Sarah Kate-Templeton at The Sunday Times 22nd May 2016 reveals the truth behind the health lottery and post code rationing. “Don’t trust your cancer doctor says specialist”. The perverse incentives to omit offering the best care are too great. The doctor needs to be reminded that when his duty to the patient conflicts with his duty to the state the patient takes preference.
A leading cancer consultant has exposed the lottery of NHS cancer care in a book that gives patients tips on how to secure the treatment they need from the health service.
In The Street-Wise Patient’s Guide to Surviving Cancer, Karol Sikora warns cancer patients that the NHS does not exist to help them as individuals and they cannot simply trust their doctors and nurses to ensure that they get the best available treatment on time.
Sikora, a former chief of the World Health Organisation cancer programme, tells patients how to “work the system” and gives practical advice on how to ask for the best drugs and when to write to doctors if their treatment schedule is delayed.
He even advises patients to give chocolates to clinic receptionists and consultants’ secretaries to get them on their side.
Sikora, who has worked in the NHS for more than 40 years, writes: “You need to understand one very simple point.
“The system is not actually there to help you — or at least not you alone.
“The system is there to maximise the quality of cancer treatment overall, to make sure the organisation and the people within it make a living and to make sure that the burden on society as a whole is not too great. Of course, much of the time, that will mean treating your cancer as quickly and effectively as possible. But — and this is the important point — not all the time.”
Sikora says the main focus of the “cancer industry” is curing patients in general, adding, “it doesn’t make much difference [to the health service] whether you are one of the people who get cured or not”.
To avoid being lost in this system he advises patients that they, and their relatives or friends, must start off by becoming extremely well informed about the particular cancer they are suffering from, including obtaining copies of their scans and pathology reports and looking up the most respected American guidelines on what the treatment plan should be.
This includes drawing up their own treatment schedule and ensuring that the hospital sticks to it.
Sikora writes: “The difference between treating a cancer quickly and delaying for a few months can quite literally be life or death.”
As a result he believes that all patients should write to the specialist in charge if a delay “stretches into weeks”.
Sikora also says that the drugs available vary between NHS hospitals, and patients need to find out which ones offer the best treatment for their cancer.
“If you feel you are missing out, make a fuss — politely,” he writes. “If you don’t ask, you don’t get.”
Patients are also advised to get to know the first names of receptionists and consultants’ secretaries and recommended to give them small gifts such as chocolates, flowers or wine, because Sikora says this will make it more likely that they will have their appointments booked on time.
Kris Hallenga, 30, has managed her own treatment for the past seven years after doctors failed to diagnose her breast cancer and dismissed a lump in her breast as hormonal.
She was finally diagnosed with breast cancer, which had spread to her spine, in 2009, after insisting on a referral to a specialist.
Hallenga says she is so accustomed to delays and errors in her care — such as letters advising her of scans arriving on the day the test is due to take place — that she now has a “hotline” to the hospital’s imaging department and checks the appointment times herself. The campaigner, who has set up the charity CoppaFeel!, said: “You think there is a clear road map. No one tells you how proactive you have to be.
“I worry about the people who are old and frail and who are not [proactive] and that they are not getting the care and follow-up that they need.”
‘Give PA box of chocolates’: Karol Sikora’s top tips for surviving cancer:
• Learn the first names of the clinic receptionist and consultant’s PA
•Give them chocolates
•Request to see the same nurse or doctor
• Work out a treatment timetable from the start. If it falls behind schedule, write to the consultant
• Learn as much as possible about your cancer and the best available treatments
•Request a copy of your pathology report and any scans
•Negotiate for the best treatment calmly and politely, but don’t be a push-over
•Find out which hospital offers the best treatment for your particular cancer and ask for a referral
•Before you sign consent forms for radiotherapy, ask your consultant if it is the most up-to date type