14 July 2016
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.1
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.2 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.3 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.4
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.5 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.
Frances Hansom, 32, from Leeds, West Yorkshire, was diagnosed with Hodgkin’s lymphoma in 2012. She says:
“Once I was eventually diagnosed with cancer, the care and treatment were good, but support about life after cancer was lacking. People still believe that you’re either cured and running up mountains or you’ve lost the ‘brave fight’.
“No one really explained that I’d suffer for years not from the cancer but the surgery and chemotherapy I had to go through. The hangover from the drugs has been immense and the list of side effects is long, from extreme fatigue, poor sleep and acute anxiety to breathing problems and sight loss.”
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.6
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. 7Those in the South West were amongst the most likely to find someone to talk to about their worries and fears.8
If you are concerned about the long-term side effects of treatment you can access a range of support from Macmillan, including leaflets and booklets, a website with reliable information and support, and a telephone line. Macmillan’s information and support bus also tours the UK,offering free, confidential information and support to people in their communities.For more information visit macmillan.org.uk or call 0808 808 0000.
For further information, please contact:
Catherine Jones, Senior Media & PR Officer, Macmillan Cancer Support
0207 091 2453 (out of hours 07801 307068)
Notes to Editors:
- Macmillan estimate based on the 42% of respondents who said they were not fully explained to them (Quality Health, National Cancer Patient Experience Survey 2015, http://www.ncpes.co.uk/index.php/reports/national-reports/2488-cpes-2015-national-results/file) applied to the 280,000 people had a first treatment for cancer in 2015 (NHS England Cancer waiting times.https://www.england.nhs.uk/statistics/statistical-work-areas/cancer-waiting-times/) to give a minimum number of those who did not have their side effects fully explained to them
- As above
- Macmillan estimate based on known cancer prevalence of the number of people living with cancer in England in 2015 (Maddams J, Utley M, Møller H. Projections of cancer prevalence in England, 2010-2040. Br J Cancer 2012; 107: 1195-1202) and expert consensus, see Macmillan Cancer Support (2013) Throwing light on the consequences of cancer and its treatment.
- Based on data reviewed as part of Macmillan Cancer Support (2013) Throwing light on the consequences of cancer and its treatment: Khan NF Mant D, Carpenter L, Forman D and Rose PW. 2011. Long-term health outcomes in a British cohort of breast, colorectal and prostate cancer survivors: a database study. British Journal of Cancer 105, S29–S37. Data showed that those with breast cancer were 1.95 more at risk of developing heart failure compared to those without a cancer diagnosis
- Macmillan estimate based on the 54% of respondents said they had not been given a care plan (Quality Health, National Cancer Patient Experience Survey 2015, http://www.ncpes.co.uk/index.php/reports/national-reports/2488-cpes-2015-national-results/file) applied to the 280,000 people had a first treatment for cancer in 2015 (NHS England .Cancer waiting times.https://www.england.nhs.uk/statistics/statistical-work-areas/cancer-waiting-times/) to give a minimum number saying they were not given a care plan.
- Quality Health, National Cancer Patient Experience Survey 2015,http://www.ncpes.co.uk/index.php/reports/national-reports/2488-cpes-2015-national-results/file
- The Macmillan estimate for the regions in England is calculated from scores for the residents living in the CCGs (Quality Health, http://www.ncpes.co.uk/index.php/reports/local-reports/data-tables/2493-ccg-data-tables/file) which have been matched to Region based on ONS Lookup Tables (available at: https://geoportal.statistics.gov.uk). Four CCGs straddle more than one region and in this instance they have been allocated to the region which contains the majority of its Output Areas. It is important to note that calculations exclude those who said they did not need an explanation (which at an all England level is 5.0%) and those that did not know or could not remember (which at an all England level is 3.5%). Scores have been weighted to account for case-mix adjustment. It is important to note that calculations exclude those who did not know/ understand what a care plan is (which at an all England level is 12.3%) and those that did not know or could not remember (which at an all England level is 7.7%)
- As above. It is important to note that calculations exclude those who did not have any worries and fears (which at an all England level is 26.2%).
- If GPs need support in spotting the potential side effects of cancer treatment they can visit http://www.rcgp.org.uk/clinical-and-research/our-programmes/clinical-priority-and-spotlight-project-applications.aspx
About Macmillan Cancer Support
When you have cancer, you don’t just worry about what will happen to your body, you worry about what will happen to your life. Whether it’s concerns about who you can talk to, planning for the extra costs or what to do about work, at Macmillan we understand how a cancer diagnosis can take over everything.
That’s why we’re here. We provide support that helps people take back control of their lives. But right now, we can’t reach everyone who needs us. We need your help to make sure that people affected by cancer get the support they need to face the toughest fight of their life. No one should face cancer alone, and with your support no one will.
To get involved, call 0300 1000 200 today. And please remember, we’re here for you too. If you’d like support, information or just to chat, call us free on 0808 808 00 00 (Monday to Friday, 9am–8pm) or visit macmillan.org.uk