CALLS TO MACMILLAN SUPPORT LINE APPROACH QUARTER OF A MILLION AS CHARITY WARNS MANY PEOPLE CONTACT AT “BREAKING POINT”

  • Staff say many calls result from patients feeling they can’t ask questions to the overstretched doctors and nurses caring for them

Calls to the Macmillan Support Line will hit almost a quarter of a million this year. Staff on the free support line, which is open 365 days a year, have already received more than 240,000 enquiries in 2019[i] and supported more than 65,000 people — 7% more people than in 2018 and 14% more than the year before that[ii].

Last year alone, the charity supported almost 100 people over the ‘three days of Christmas’ (Christmas Eve, Christmas Day and Boxing Day).

The number one reason callers contacted Macmillan was for emotional support, with 20% more people calling with issues such as anxiety, fear and depression[iii] than the previous year. Staff also point to callers needing support as they experience so called “scanxiety” — anxiety related to waiting for results and treatment.

This rise in calls also comes at a time of significant pressures facing the NHS. Approaching half (44%) Cancer Nurse Specialists say that their workload is having a negative impact on patient care[iv] and one in five people recently diagnosed with or treated for cancer (17%) say the healthcare professionals who cared for them seemed to have unmanageable workloads[v]

Cancer Waiting Times performance is also on a downward trajectory. Across all nine NHS England cancer targets, the last 12 months recorded the lowest proportion of patients seen or treated within the timeframes of any year since records began[vi].

Ellen Lang, a Service Manager on Macmillan’s Support Line, says:

“Every day people call our support line because their world has been turned upside down by a cancer diagnosis. Whatever the concern; fear about impending test results, anxiety about how they will tell their children or what their scan outcome means, they just need someone to listen and help them make sense of it all.

“When you only have ten minutes with your doctor and your nurse is visibly rushed off their feet, it’s inevitable that you’ll leave without all the answers you need. This is something we’re seeing people experiencing more often. For us a big part of the role is to fill in the gaps which cause so much distress and anxiety for patients and their loved ones.”

Mandy Mahoney, 48, is an outreach support worker from London and was initially diagnosed with breast cancer in 2011. She says:

“The Macmillan Support Line has been like a one stop shop for me — I’ve spoken to nurse specialists as well as benefits advisers and they’ve all been great. My metastatic cancer diagnosis has directly impacted on my anxiety and knowing the support line is there for me emotionally has been so helpful.

“In recent times with the pressures on the NHS, I’ve become less likely to contact the hospital for fear of being a nuisance, but this has an impact on my mental health. I live in three month chunks these days, always waiting to see what happens at the next scan. Managing that uncertainty long term can be hard. The Macmillan Support Line has been such a lifeline for me.”

Lynda Thomas, Chief Executive at Macmillan Cancer Support, says:

“We’re incredibly proud of the service our support line provides, but it’s heart-rending that so many people call at breaking point having struggled to find the support they need from their healthcare team who we know are run-ragged and doing the best they can.

“NHS staff do an extraordinary job faced with huge pressures, but as increased demand for our services shows, there simply aren’t enough of them to meet the needs of the growing number of people living with cancer.

“The newly-formed government must urgently deliver on its promises to prioritise a fully-funded plan for our NHS workforce so that everyone living with cancer can receive the very best care and support they need.”

For more than 5,000 people, issues with accessing hospital or community care were the main reason they called — the second most common reason for calling after emotional support. This includes issues such as difficulties with contacting the staff involved in their medical care either in hospital or in the community, difficulties in accessing specialist medical equipment for use at home, or support with accessing hospice services.

More people needed help with accessing care than with side-effects of treatment and pain combined, and the number has increased by 11% this year after remaining relatively steady for several years[vii].

The charity expanded its support line opening hours last year to meet growing demand. Staff taking calls say many people living with cancer ring up in distress having not had the time they needed to process information when speaking with their healthcare team.

Fact Box

  • The Macmillan Support Line offers confidential support to people living with cancer and their loved ones and is staffed by cancer information advisors, cancer information nurses, financial guides, a work support team, welfare rights advisors and an energy advice team.
  • The free phone line can be called on 0808 808 00 00, 7 days a week, from 8am to 8pm, although there are hours may vary over the festive period. See Macmillan’s website for more details.
  • The busiest day for calls to the support line in 2019 was 8th April while Monday between 10am and 11am was the most popular time of the week to call.
  • The most common specific reason that people call is for emotional support — more people called about this than side-effects of treatment, pain and tests combined (8011 unique customers in 2019 to date vs 2254, 882 and 1297 respectively).
  • 2019 also saw more than 2,000 people call for support with accessing welfare benefits — a similar number to those who called about the side-effects of treatment
  • Macmillan’s Online Community is also expecting spike in activity in January compared with the other winter months (December and February). In January 2019 there were more than 700,000 page views, a 22% increase on December 2018 and 10% higher than in February 2019 (720,056 compared with 652,789 and 591,154 respectively) as people sought peer support in the New Year.
  • Previous Macmillan research shows that nearly two thirds (64%) of people recently diagnosed with cancer in England have experienced feelings of anxiety, fear or depression whilst waiting for their treatment to start[viii].

Macmillan warns that while cancer isn’t always life-threatening, it is always life-changing. Macmillan does all it can to help people living with cancer live their lives as fully as they can, but it cannot do it alone.

The charity is funded almost entirely by generous public donations, and so it continues to call for donations to help its services be there for more people affected by cancer and calls on governments across the UK to address the staffing challenges facing the NHS and social care.

- ENDS -

For further information, please contact:

Ruth Moore, Media and PR Officer, Macmillan Cancer Support

020 7840 4852 (out of hours 07801 307068)

rmoore@macmillan.org.uk

About Macmillan Cancer Support

We’re here to help everyone with cancer live life as fully as they can, providing physical, financial and emotional support. So whatever cancer throws your way, we’re right there with you.

For information, support or just someone to talk to, call 0808 808 00 00 or visit macmillan.org.uk

[i] As of 19th December, the Macmillan Support Line has received 241,234 enquiries through its channels, 219,378 of which were phone calls. This is a similar number to the previous year. Macmillan has recently changed how it records enquiries so comparable data is not available for prior to 2018.

[ii] As of 19th December, the Macmillan Support Line has supported 65,912 people in 2019 compared with 61,701 people in the same period in 2018 and 58,055 in 2017.

[iii] 8011 customers in 2019 compared with 6661 in 2018, where subject is logged

[iv] Macmillan Cancer Support. Voices from the Front Line. 2019. Available from: https://www.macmillan.org.uk/_images/voices-from-the-frontline-september-2019_tcm9-355168.pdf

[v] Macmillan cancer support and Populus paper and online survey of 6,905 people recently treated for, or diagnosed in the last 5 years with, cancer across the UK. Fieldwork July-September 2019. Survey data has been weighted to be representative of recently treated cancer population (Cancer Registration data) in terms of age, gender and cancer type within England. The weighting of England, Scotland, Northern Ireland and Wales has been based on cancer prevalence data. Extrapolation based on 500,000 English Cancer Registrations in 2014 (NCRAS, http://www.ncin.org.uk/cancer_information_tools/cancer_patient_experience)

[vi] Cancer Waiting Times — National Time Series October 2009 — October 2019 (Provider-based) [https://www.england.nhs.uk/statistics/wp-content/uploads/sites/2/2019/12/Cancer-Waiting-Times-National-Time-Series-Oct-2009-Oct-2019.xlsx] (Accessed December 2019)

[vii] As of 19th December 2019, there have been 5,351 customers about accessing hospital or community care in 2019. This compares with 4,810 for the same period in 2018, 4,910 in 2017 and 4,949 in 2016.

[viii] Macmillan Cancer Support/YouGov survey of 1,020 adults in the UK with a previous cancer diagnosis. Fieldwork was undertaken between 5th and 14th October 2016. The survey was carried out online. The figures have been weighted and are representative of the living with cancer population. Results quoted are based on the 184 respondents in England diagnosed within the last two years.

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