On any given work day, 1,000 people in the UK are told they have cancer — a devastating diagnosis for anyone.
All too often, rather than passing quickly into line for first-class treatment, in many cases there is a lengthy delay — and even then the best treatment isn’t always on offer.
This is the view of a world-leading cancer specialist, who also believes that the British way of passively taking your spot in a queue not only for treatment but also for diagnosis in the first place is costing lives.
In a provocative new book, he is urging people to take a different approach altogether — and given the scale of the delays now facing NHS patients, many may think he has a point, with official data released last week showing that in March more than a third of people with possible cancer failed to get a diagnosis or start treatment within two months of their GP giving them an urgent referral.
Two months is the maximum time patients should wait for their first treatment under NHS targets.
Professor Karol Sikora (pictured) has written a new book encouraging people to be pushy patients in order to save their lives
The professor warns that ‘postcode lotteries’ in funding and medical technology mean your local NHS hospitals may not offer you the most effective treatments (file image)
Yet a report from the spending watchdog, the Parliamentary Public Accounts Committee, warned that in March, cancer waiting times were at their worst recorded level, with more than 66,000 patients being forced to wait more than two months for their first treatment last year after a referral.
Some patients waited as long as six months.
All this is even more reason, suggests Professor Karol Sikora, that we should push ourselves to the forefront of the NHS cancer lists and to argue for the very best treatments that today’s health service can provide.
Karol Sikora, 74, is a professor of cancer medicine, a Cambridge University fellow, a former chief of the World Health Organisation’s cancer programme and an NHS oncologist for 42 years.
He has written 300 scientific papers and 20 books, including Treatment Of Cancer, which remains the standard British postgraduate textbook after 30 years in print. In other words, there is little he doesn’t know about the disease and its treatment.
Professor Sikora chooses an alarming example to underpin his controversial argument.
This is the 1985 Manchester Airport disaster, where a British Airtours plane caught fire on take-off, killing 53 people in the back.
He explains: ‘The passengers who died were overcome by fumes, but the exception was a young man so driven to survive that he jumped over many in front of him to reach the exit.
‘Ethicists can debate forever if this was reasonable. But maybe if you’ve been trapped inside the NHS cancer maze, you just need to put yourself first to survive.’
To a nation of people which prides itself on queuing patiently, this might seem shocking.
Yet Professor Sikora is adamant.
The 12 key questions you need to ask
Take a screenshot of this guide and take it with you to your appointments:
1. What type of cancer is it and what tissue is it coming from?
2. How big is the cancer? Sometimes a number will be used to express this. T1 (‘T’ is for tumour) implies a small tumour, T4 is a large tumour.
3. Has it spread outside the primary tissue to anywhere else in the body?
4. Has it spread to lymph nodes? When cancer spreads, it travels first from the tissues into the lymphatic channels, and then into the nearby lymph nodes — which are small, bean-shaped clusters of cells — then into the bloodstream and beyond into other organs.
5. What stage is the tumour? Staging refers to how far your cancer has spread. The stage is given as a Roman numeral, ranging from stage I (no spread) to stage IV (spread to other organs).
6. What grade is the tumour? The grade represents the speed or aggression with which your cancer is growing — it is usually determined by the appearance under a microscope and is sometimes given as a number; 1 is low grade and generally has a better outcome than grade 3, for instance.
7. What is the proposed treatment?
8. Are there other options?
9. Where will this treatment be done?
10. When will I start treatment?
11. What are the chances of the cancer being cured completely?
12. Can I have a copy of the biopsy and the most important imaging reports such as X-rays, CTs or MRIs?
‘You need to get out of your head the idea that it’s impolite or simply not British to push yourself forward,’ he says. ‘You have got to make things the best for you.’
He warns that ‘postcode lotteries’ in funding and medical technology mean your local NHS hospitals may not offer you the most effective treatments — but if you do your homework and discover that better care is available in a nearby authority, it is your right to request to be treated there.
What’s more, he adds, pushing to receive the best, most modern treatment available on the NHS and to have it delivered in the best way can help to improve the system by pushing the service to offer only the optimum care available. ‘By contrast, just being a passive, unengaged patient simply won’t change anything for the better,’ he argues.
Professor Sikora repeatedly calls the NHS system a ‘cancer maze’.
Why? As he explains: ‘The system is not particularly user-friendly and it simply doesn’t have enough time to help people through it properly.
‘In my career I’ve increasingly realised that what people need is something to help them to negotiate the system.’
Ultimately this ‘something’ is in the patients’ hands. Learning to be proactive, knowledgeable and assertive is something millions of us must learn to do, he adds, saying: ‘One in three will get cancer and the incidence is rising dramatically as our population ages. This is because cancer predominantly affects the over-60s, although it can strike at any age.’
But how can we become proactive, knowledgeable and assertive in the shadow of cancer?
And how can we do it without getting ourselves labelled as the type of troublemaking patient that NHS staff and medical professionals would prefer to avoid?
Professor Sikora says that when it comes to how we get the best care, the secrets lie in polite persistence, medical self- education and even light bribery of the right people.
In his new book, he explores how to acquire the plain and often surprising skills that are needed, and how to use them to save your own life or that of a loved one — as he explains below.
SWOT UP AND GET INVOLVED
As a patient you need to learn how the system works. You need to learn how to make sure it works for you all the time.
Informed and engaged patients survive much better than ones who just passively let things happen to them. Data shows the difference between informed patients and those who fail to engage with the system, who are intimidated and don’t participate in their care by learning everything they can about the cancer that they have, their scans and tests, and how this all affects their bodies.
Studies suggest that this can make up to a 20 per cent reduction in their chances of survival.
Don’t be afraid of looking at the prognosis (the outlook for your cancer). Survival rates for some cancers are quite high, and for others unfortunately very low.
It may come as a shock to learn that the chance of your living through the next two years is perhaps as little as 30 per cent.
But bear in mind that doctors are always too cautious in their assessments. Just because the chances of survival are low, there is no reason why you shouldn’t be the one who pulls through, especially if you are engaged and proactive.
Equipping yourself with the maximum amount of information possible and taking control of your treatment by discovering all the options and deciding which are best for you, are the two key factors to beating your cancer.
Don’t be put off by the medical terminology — use Google to clarify anything you don’t understand. With the right information you can create a level playing field between you and your doctors. They won’t be able to simply fob you off.
PRACTISE POLITE PERSISTENCE
Being treated for cancer inevitably means you have to keep going back into the system multiple times.
So it’s important that you always interact pleasantly with all the healthcare staff you come across, even if things aren’t going well, in order to maximise your chances of them getting you the best and most timely care.
This is especially true with the people you might consider the underdogs in the system.
You probably think of the cancer system as run by a consultant, with junior doctors, and then a layer of nurses and other clinical specialists. You probably imagine that if you get on well with the consultant, you’ll get the whole system working for you.
Actually it’s better to get the people at the bottom of the hierarchy on your side, such as the clinic receptionist and the consultant’s secretary. In most cancer centres, receptionists and secretaries have a power that most patients don’t really understand.
They control the flow of appointments. They organise the agenda. They can make sure that everything happens at the correct time with your treatment.
These people will all go the extra mile to ensure the best, most timely treatment, if they like you.
Should you get a second opinion?
Your chances of getting an effective second opinion through the NHS before you start treatment are nowadays negligible.
The capacity just isn’t in the system.
The only way is to get a private appointment. This will cost between £250 and £350. It may be worth doing just to give you and your family peace of mind.
You could persuade someone to give it you as an early birthday present.
Make sure you’ve got all your clinical data — the imaging and biopsy reports, together with the proposed NHS treatment plan.
As for who you should see for a second opinion, there’s no point asking the consultant that’s going to treat you. They are likely to refer you to one of their chums.
There are patients who have the money to go to one of the big U.S. cancer hospitals such as Memorial in New York or MD Anderson in Houston for a second opinion, but it’s prohibitively expensive — it will set you back £100,000 or so plus travel and hotel costs.
But there’s no real need to leave your home country, because news travels fast in oncology.
It’s vital you see someone who specialises in your type of cancer and is bang up to date. Not too young and not too old. The ideal age is 45 to 60 years.
They should be taking part in clinical trials, work in a large cancer centre and publishing academic literature.
Most such consultants do private work. Doctors are not allowed to advertise their services directly but if you look on the websites of large private hospitals and clinics you will very likely find them listed there.
Try these websites by searching for your type of cancer.
The other way is to ask around, but I can’t stress enough how important it is that the expert you choose specialises in your type of cancer.
Once you’ve identified who you think could give a good opinion, check out their publications over the past five years on Google Scholar. Put in their full name and see how productive they’ve been in areas associated with your cancer type.
One further trick: some older doctors may not see you without a referral letter — but this may be difficult to obtain.
Get an appointment and say you’ll sort out the letter. You can ask your GP just for the letter or you can ask the consultant who first saw you. In truth, if you’ve got all your clinical information on hand, then the referral letter is not important. The whole charade is a throwback to a different age of medicine when the system held all the cards, and you were just an ignorant nuisance. Times have changed.
Make sure that the doctor you’re consulting for a second opinion has as much clinical information as possible sent to them in advance of the appointment. Take along your partner or a close friend and, if you like, ask if they mind you recording their recommendation on your phone. Good doctors won’t mind.
People often ask me whether a second opinion is really worthwhile. In my experience, the initial diagnosis is very rarely wrong. In less than 5 per cent of cases will the assessment be radically changed.
This will transform your whole experience and dramatically improve your chances of living through the cancer.
There’s nothing wrong with showing your appreciation of their efforts through gift-giving.
It’s got to be small, rather than offering tickets to Wimbledon. And give it to the people who are the backbone of the service, such as the receptionists and the nurses, rather than senior consultants.
Start with the receptionist — a bunch of flowers, a bottle of wine or a box of chocolates.
Wait until the third or fourth appointment so you already know them a bit, and at that point make a gesture of thanks for their help.
At my hospital, we treated a woman for many years who ran a greengrocery shop. Every few months when she came for follow-up visits after her cancer had been treated, she would bring in a fabulous box of fresh fruit for all the staff. They loved it. And the whole team felt good.
When our patient developed symptoms suggesting a possible recurrence of her cancer, she was sorted out instantly.
Conversely, I have seen a lot of unpleasantness over the years. As patients get increasingly bitter, the staff turn against them. Such patients get labelled ‘heartsink patients’, people to be avoided. Staff are not saints. If you seriously harass someone, what are they going to do? Might they quietly move your file to the back of the system and silently hope that you die before you come back to harass them again?
UNDERSTAND THE PLAN
What’s the plan for your care? You need to know what is going to happen so that you can keep checking whether you are on the right situation on the clinical pathway (the standardised plan of care) that’s set out for treating your cancer.
The world’s best cancer treatment guidelines come from the U.S. National Comprehensive Cancer Network and can be found in detail at nccn.org — and they apply here just as much as they do in the U.S. Go to this site and register as a health professional.
It will give you gold-plated care pathways for almost every type of cancer. You also need to understand exactly where your cancer is and to where it has spread.
Having all this detail allows you to take control and ask the right questions about your options — such as which types of surgery might be available for your particular tumour and what are their success rates and risks.
Start with getting the biopsy and the medical imaging on your cancer. A biopsy is a sample of your tissue taken from an area of your body suspected of being a cancer. It holds the key to your diagnosis.
This, along with the results of your medical imaging, such as scans and X-rays, are recorded in your notes. Ask and you should be given a printed copy.
Those directly involved in your care — doctors and nurses — are the first port for information.
Older and more senior doctors sometimes think these things are none of your business.
Remain charming but explain that you want to understand as much as possible about your illness so you can help contribute to the healing process.
Remember that you are fighting for something that you need to survive. It is every patient’s job to be their own best advocate. Negotiate calmly and usually locked doors will simply open and a mutually satisfactory solution found.
THINK ABOUT GOING PRIVATE
Given the delays that can dog the NHS system, sometimes it is worth spending your own money to unblock any hold-up in either your assessment or treatment, by getting things such as tests done privately.
Private hospitals are notoriously opaque about their charges.
But it is easy to shop around online for private clinics’ prices to find a computerised tomography (CT) or magnetic resonance imaging (MRI) scan that can often be done for you tomorrow for around £300, and then be sent to your NHS doctor.
Unless you have private insurance or are very well-heeled, it is best to use the NHS for your main cancer treatments.
After all, you’ve paid the price for them already in your taxes. Indeed some of the new cancer drug schedules would set you back over £200,000 for a year’s treatment.
- Cancer: The Key To Getting The Best Care: Making The System Work For You, by Karol Sikora, is published by EER Publishers, £19.99.