But in Britain this is placing an increasing demand on the NHS system that deals with aftercare, according to cancer expert Professor Jane Maher.
Writing in this week’s ‘Scrubbing Up’, she says the current system “is wasteful, ineffective and not the best way to spot many recurrent cancers”.
At the moment, cancer patients who survive initial treatment enter what is called the “follow-up” system – regular appointments to check that the cancer has not returned.
Traditionally, follow-up involves out-patient department visits with a consultant, backed up with diagnostic tests.
But the tradional way of doing things is failing patients.
According to Prof. Maher there is little evidence that this method is the best way to spot recurrences of cancer, or the other possible long-term health consequences of being treated for cancer.’
Gigi would agree with the Professor. Five years after her initial lumpectomy and course of hormone pills, she is feeling bewildered. “I find when I go for my check-ups it seems to be a case of ticking boxes. Right, that patient has been seen. Next please. And there is no time to ask questions.
Last time I had vague fears. One always imagines that any ache or pain might – just might – be cancer returning. I finally maanaged to mention to my doctor that I had a painful arm, and could this be cancer had spread to my bones? He pooh poohed my worries; but eventually, when I saw another doctor he found that I had a tear in my muscle, and he said that this must have been very painful. It was, but my original Consultant had made me feel I was worrying over nothing.
Then I have problems ‘down below’. I found out about a Bowel Cancer Test, but surely this should have been mentioned to me by my Consultant, or an automatic alert from the hospital? Or even a ‘check sheet’ when I was discharged? The test was very easy to do, so no problems there. But – the results show I should go for further investigation. I have a painful muscle condition which means I should have extra pain relief if anyone mucks about in this area, so I phone the hospital to ask how they treat my type of patient.
‘We treat you just the same as everyone else’ I was told.
This was NOT what I wanted to hear. So, I start asking questions.
“Will I have a anaesthetic during the colonoscopy?” This is normal in hospitals in Europe. ‘No, in fact WE may not even give you a sedative’ says callous nurse. Really, where do they find them?”
So Gigi is going privately, where she has been assured they know exactly what she requires, and will make sure she gets it.
Recent work suggests that around 70% of recurrence of breast cancer could be detected either by patients noticing symptoms themselves, or by surveillance testing alone, with a face-to-face appointment if needed.
But this is only possible if patients are helped to understand their illness, can access regular tests and know how and when to contact specialists if problems arise. Were YOU given any advice when you left hospital about self-testing? This should be obligatory for everyone.
The current system is just not meeting cancer survivors’ needs.
One in five people living after treatment for cancer will develop long-term emotional, psychological and physical problems that seriously affect their quality of life.
Yet there are few, if any, NHS services specifically for cancer survivors, and the National Cancer Survivorship Initiative is way off reporting its final outcome.
Lack of suitable treatment and advice
This not only affects quality of life, but also leads to unnecessary illness that costs the NHS – and the UK – dearly.
It means people can’t get back to work and may need treatment for other conditions caused by cancer or its treatment, coming on months or even years later. But as Prof. Maher says, “This cannot continue. The NHS needs to radically transform the way it provides support for patients following hospital treatment”.
Doctors need to be able to assess the level of risk, identify which patients need regular face-to-face appointments and specialist support, and which patients could, given the right tools and skills, manage their own condition.
Fundamental changes in the way that aftercare is provided would be cost effective, both to the NHS and to the wider economy.
Macmillan’s own research shows 90% of survivors have both physical and emotional needs after treatment, with many unable to return to work as a result.
If patients are equipped with information, and understand when they need to see a health professional or when they may need a diagnostic test, this will reduce the need for unnecessary follow-up appointments.
This, in turn, will free up resources which can be reinvested in the new aftercare services for people with cancer. It costs much less to provide a person with the skills and knowledge to self-manage their condition, and provide support if needed from a nurse in the community, than it does to make patients travel to hospital for a follow-up appointment that doesn’t take into account all of the patient’s needs.
Give cancer patients the tools to self-manage, treat us like intelligent human beings, give us effective rehabilitation services that support us getting back to work, and this would mean:
- fewer people claiming benefits
- more people paying taxes
- employers retaining experienced staff.
Which is a win, win, win situation for everyone.