Around 116,000 cancer patients in England could be at risk of serious illnesses because the potential future side effects of their treatment were not fully explained to them, according to brand new analysis by Macmillan Cancer Support.

Almost half (42%) of all cancer patients surveyed in the Cancer Patient Experience Survey (CPES), a national survey of 71,186 cancer patients conducted by Quality Health, said staff did not fully explain the potential long-term side effects they could face.

These could include debilitating illnesses such as heart conditions, swelling limbs or issues with fertility.

Previous Macmillan research estimates that at least one in four people living with cancer –around 500,000 in England - experience a wide range of long-term debilitating health conditions caused by their cancer or its treatment.

For example, women living with or after breast cancer are almost twice as likely to get heart failure compared to those who have not had the disease.

It is vital that people with cancer are able to spot these long-term side effects so they can get prompt treatment and support to manage them.  If people are unaware of these side effects they could go left untreated or worsen.

Being unprepared for potentially debilitating long-term side effects could leave patients anxious and depressed.

In some cases, small lifestyle changes could help to prevent or manage health problems.

For example, if someone with cancer develops a heart condition from their treatment, they could benefit from altering their diet or exercise regime.

One reason that so many patients may be unaware of the potential long-term side effects of their cancer is that an estimated 100,000 patients in England are not receiving a care plan.

This is a record given to patients after they have developed it with their healthcare professional which examines potential issues such as mental health or social care needs.

It lets healthcare teams know what follow-up or aftercare is needed and should be reviewed and updated at different points including after a patient’s treatment ends.

Macmillan is concerned about the lack of patients receiving care plans given that the Cancer Strategy for England, released a year ago, recommends that everyone with cancer should get one, along with information on the short and long-term side effects and how to manage them.

Lynda Thomas, Chief Executive at Macmillan Cancer Support, says “It is deeply worrying that thousands of cancer patients in England are being left in the dark about potential side effects that could develop months or even years after diagnosis. To find out, like a bolt from the blue, that you have a heart condition or incontinence, something you could have been more prepared for with the right information, must be devastating. It could mean patients end up in A&E or worse, suffering in silence."

“Going through cancer can be a confusing and stressful time so in some cases, patients may have been told about side effects but not absorbed the information. These findings highlight how important it is that patients are given information at the right time and in the right way, whether that’s through a face-to-face discussion, leaflets or access to online resources, or a combination of all of these. Cancer patients need to be told about potential long-term side effects, be offered a care plan, be told where to get support and know who to speak to about their worries and fears. The NHS needs to be equipped to provide this for cancer patients in order to cope with the increasing numbers of people being diagnosed and living with the disease.”

Macmillan’s analysis of the survey, which has been improved this year so that it reaches more people and is more effective at pinpointing areas of improvement, has shown that cancer patients in England could also be feeling alone once they leave the confines of hospital.

Almost half (48%) of those surveyed said they could not always find staff to talk to about their worries and fears during their hospital stay.

The quality of cancer care is patchy across the country and more needs to be done to narrow the gap between the best and worst performing areas. Those living in the North East of England were the most likely to receive a care plan and a full explanation of potential side effects.

Those in the South West were amongst the most likely to find someone to talk to about their worries and fears.

Source: Macmillan Cancer Support