9 June 2015
Top ten cancer needs revealed as a quarter of cancer patients struggle to manage the emotional impact of the disease.
A quarter of (25%) cancer patients struggle to manage the emotional impact of the disease, with many facing sleep problems, nightmares, fear and anxiety as a result of diagnosis, according to new analysis by Macmillan Cancer Support.
The analysis, being launched at the Cancer Outcomes Conference in Belfast today, takes data from almost 4,000 care plans based on Electronic Holistic Needs Assessments (eHNA) and reveals for the first time the top ten concerns of people with cancer after diagnosis.
With 2.5 million people now living with cancer in the UK, and this number set to rise to four million by 2030, the charity is warning that the current healthcare system is not set up to cope with the complex and often long-term needs of the growing number of people living with cancer.
The data reveals the top ten issues people with cancer are concerned about:
1. Worry, fear or anxiety
2. Tiredness / exhaustion or fatigue
3. Sleep problems / nightmares
5. Eating or appetite
6. Anger or frustration
7. Getting around (walking)
8. Memory or concentration
9. Hot flushes / sweating
10. Sore or dry mouth
Ashley Green, 44, from Shropshire was diagnosed with head and neck cancer in 1991 and had a recurrence in 2011. He says:
“I didn’t realise how much of an emotional impact my diagnosis would have on me and my relationship. I felt like I was sinking under the water. My relationship with my wife suffered after the diagnosis, and we slowly moved further and further apart as we buried our fears. It was only when we reached out to Macmillan that they offered us psychological support: it really helped bring us back together and helped me understand what Lara was going through.”
Juliet Bouverie, Director of Services and Influencing at Macmillan Cancer Support, says:
“The national system of post-treatment follow-up for cancer patients is the same as it has been for decades, and offers limited support for people beyond their immediate clinical needs. This is simply not good enough.
“Today’s evidence, which shines a light on the extent of the emotional and isolating impact of the disease, gives us even more reason to urgently call for a healthcare system which offers a personalised and practical approach to cancer care.
“If we are serious about getting cancer care right in this country, everyone with the disease must receive a holistic needs assessment to identify their concerns, a quality consultation to discuss and address these, and access to support services which will help them to manage their condition and live well beyond the traditional follow-up period. It’s no good papering over the cracks any longer, we need a complete system overhaul.”
The eHNA tool provides cancer patients with a detailed needs assessment through a touch screen tablet, the information is then sent to the clinician through a secure website, and provides the framework for a structured conversation based on what matters to the person with cancer and a personalised care plan.
Evidence shows that the eHNA electronic tool results in more personalised care for people with cancer, more than half (54%) of people who had an eHNA say using it helped them to discuss concerns with their healthcare team, and more than one in three (36%) felt more confident to discuss personal sensitive issues.
Macmillan Cancer Support is currently working with a number of hospital trusts across England, Scotland and Wales to implement the eHNA, and would like to see the holistic needs assessment, either in paper or electronic form, fully rolled out in each country of the UK.
No one should face cancer alone. For support or information visit www.macmillan.org.uk
or call 0808 808 00 00
For further information, please contact:
Cora Bauer, Senior Media and PR Officer, Macmillan Cancer Support
0207 091 2016 (out of hours 07801 307068)
Notes to Editors:
1. Kuczkowska K, Watson A, & A Brittle. 2015. Using eHNA data to explore cancer needs. Poster presentation. Data presented in this release is based on care plans written in the year between September 2013 and August 2014. We conducted an analysis of data from the eHNA online database which included data from 5,176 needs assessments carried out in 46 sites England, Scotland and Wales participating in the programme, using four comparable questionnaires. As a result 3,855 care plans and 4,788 actions were taken forward by clinicians and patients. Data presented here comes from sites using the ‘Concerns Checklist’, accounting for 44% of all care plans conducted in the year to the end of August 2014. There is an underrepresentation of men and older people (aged 65+) in the cohort of people with cancer using eHNA (9% and 20% fewer when compared to cancer incidence, respectively). Across the sites the eHNA is used mostly during diagnosis and treatment (65%), as these stages offer the most convenient moments for a needs assessment, given the number and length of clinician/ patient interactions at these stages.
2. Maddams J, Utley M, Møller H. Projections of cancer prevalence in the United Kingdom, 2010–2040. Br J Cancer 2012; 107: 1195–1202. (Projections scenario 1). Macmillan analysis based on extrapolation of 2010 and 2020 projections that the number of people living with cancer will hit an estimated 2.5 million in 2015.
3. Ipsos Mori for Macmillan Cancer Support. 2015. Evaluation of the Electronic Holistic Needs Assessment (eHNA).
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