13 October 2018
Thousands of incurable breast cancer patients continue to be denied crucial nursing care three years after UK Government cancer strategies promised to deliver access to a designated nurse for all cancer patients, reveals Freedom of Information data from charity Breast Cancer Care.1
Shockingly, the figures - released on the international awareness day for the disease – expose that almost three quarters (72%) of NHS Trusts and Health Boards across England, Scotland and Wales do not provide a dedicated nurse for people living with incurable breast cancer.2
There has been only a 7% increase in the Trusts and Health Boards providing vital nursing support in the two years since the charity’s last research, indicating a worrying lack of NHS investment in care to help people live well for longer.3
With Cancer Patient Experience Surveys across the UK identifying that people with a clinical nurse specialist are more likely to be told about side effects and given the opportunity to discuss their needs and concerns, Breast Cancer Care is calling for urgent funding to be made available to recruit and train nurses to fill the significant gaps.4
Samia al Qadhi, Chief Executive of Breast Cancer Care, says:
“Our staggering findings reveal just how much NHS nursing care for people with incurable breast cancer has stagnated. After this life-changing and life-limiting diagnosis patients continue to be abandoned without the ongoing, specialist support they need to manage complex treatment and debilitating side effects, like chronic pain and fatigue.
“People living with incurable breast cancer tell us that access to a specialist nurse is the single most important aspect of their care and without it they feel isolated, forgotten and invisible. So today’s failings must not be swept under the carpet.
“We are calling on all UK Governments to create a Secondary Support Package for incurable secondary breast cancer to ensure that everyone has access to the specialist support they need, when they need it. Funding to recruit and train the urgently needed clinical nurse specialists must be made available, starting with a commitment in the NHS England Long Term Plan published next month.”
Jo Myatt, 42 from Chorley, was diagnosed with incurable secondary breast cancer in August 2016, 10 years after her primary breast cancer, and has been campaigning with Breast Cancer Care for more dedicated nurses. She says:
“I was told I had incurable breast cancer by a GP on a Friday evening, and sent home with no information or numbers to call, or any idea about what was to come. After being given such a devastating diagnosis, the support I received was non-existent. I felt totally written-off.
“I was totally overwhelmed and mourning the future I’d never have and yet had no dedicated nurse, that person to contact for emotional support, or to guide me through my long list of questions about available treatments and the side effects that I would experience.
“It’s incredibly disappointing to see such a lack of progress in getting people with incurable breast cancer - like me - the nursing support we so urgently need. We do not have the time to wait – we all deserve the best care possible today.”
Breast Cancer Care’s figures also reveal other failings in the care of people with incurable breast cancer across the UK:
Two fifths (40%) of NHS Trusts, Health Boards and Health and Social Care Trusts were unable to state, when asked, how many secondary breast cancer patients are currently under their care.5
Over two thirds (70%) of hospital organisations across the UK do not assess people’s emotional and physical needs at diagnosis and as treatment changes.6
The majority (80%) of hospital organisations do not give all patients a summary at the end of each treatment, including about how they have responded to the treatment.7
This Secondary Breast Cancer Awareness Day, Breast Cancer Care is calling for everyone diagnosed with the incurable disease to have a Secondary Support Package at the point of diagnosis to ensure they can access a dedicated nurse to co-ordinate their care and a referral to tailored support services, to give them the vital, specialist support they need to live well.
The charity’s secondary breast cancer campaign is currently being supported by players of People’s Postcode Lottery.
For further information, please contact:
Sophie Softley Piece, Press and PR Manager, Breast Cancer Care
020 7960 3505 (out of hours 07702 901 334)
Notes to editors
There are an estimated 35,000 people with secondary breast cancer in the UK.
All figures are from a Breast Cancer Care Freedom of Information request undertaken between 15 August 2018 and 5 October 2018. Sent by email to all NHS trusts in England (151), all NHS Boards in Scotland (14) and Wales (8) and all Health and Social Care Trusts in Northern Ireland (5). There was a 86% completion rate across Scotland, 88% in Wales, 83% in England and 80% in Northern Ireland, giving a total of 149 responses.
To allow accurate assessment of progress in the provision of dedicated nurses for incurable breast cancer these figures exclude Northern Ireland (not surveyed by the charity in 2016) giving a total of 145 responses. All other figures referenced include Northern Ireland.
The total number of hospital organisations answering each question varies according to the breast cancer services and treatment pathway they offer.
1. The Cancer Strategy for England (2015-2020) committed to access to a Clinical Nurse Specialist or other key worker for all patients. The Scottish Cancer Strategy (2016) included a commitment to everyone with cancer in Scotland who needs it has access to a specialist nurse during their care and treatment, and in The Cancer Delivery Plan for Wales (2016-2020), there is a commitment to everyone having a named key worker, usually the clinical nurse specialist, to help navigate the pathway and ensure a smooth patient journey. There is no cancer strategy in place for Northern Ireland.
2. 105 NHS Trusts and Health Boards in England, Scotland and Wales responded they did not offer nurses that provide care to secondary breast cancer patients only.
3. In 2016, 33 out of a total of 155 (21%) NHS Trusts and Health Boards surveyed in England, Scotland and Wales responded they offer a dedicated nurse and in 2018 this rose to 40 out of a total of 145 (28%) NHS Trusts and Health Boards surveyed in England, Scotland and Wales.
4. Wales Cancer Patient Experience Survey 2016, Macmillan Wales and Welsh Government, results available at https://www.macmillan.org.uk/_images/wales-cpes-infographic_tcm9-314011.pdf; National Cancer Patient Experience Survey 2016, Quality Health, England CCG Data Tables available at http://www.ncpes.co.uk/reports/2016-reports/local-reports-1/data-tables-1; Scottish Cancer Patient Experience Survey 2015/16, The Scottish Government and Macmillan Cancer Support, results available at https://beta.gov.scot/publications/scottish-cancer-patient-experience-survey-2015-16-9781786522979/ and analysis of free text available at https://beta.gov.scot/publications/scottish-cancer-patient-experience-survey-2015-16-analysis-free-text/pages/5/
5. 52 NHS Trusts, Health Boards and Health and Social Care Trusts were unable to respond how many patients with secondary breast cancer are currently under their care (out of 129 hospital organisations in total).
6. 91 NHS Trusts, Health Boards and Health and Social Care Trusts do not offer a Holistic Needs Assessment to secondary breast cancer patients at the point of diagnosis and as their treatment changes, which is a discussion with a healthcare professional to help patients think about needs and concerns (out of 130 hospital organisations in total).
7. 103 NHS Trusts, Health Boards and Health and Social Care Trusts (out of 128 hospital organisations in total) responded that they do not offer a Treatment Summary at the end of each phase of treatment, which is used as an ongoing document by a person with secondary breast cancer when using services they have been referred to, and in ongoing discussions with the range of healthcare professionals providing their treatment.
Breast Cancer Care provides free support and information for anyone affected by secondary breast cancer, find out more at www.breastcancercare.org.uk
About Breast Cancer Care
Breast Cancer Care is the only specialist UK wide charity providing support for women, men, family and friends affected by breast cancer. We’ve been caring for them, supporting them, and campaigning on their behalf since 1973.
Today, we continue to offer a unique range of support including reliable information, one-to-one support over the phone and online from nurses and people who’ve been there. We also offer local group support across the UK.
From the moment someone notices something isn’t right, through to their treatment and beyond, we’re there to help people affected by breast cancer feel more in control. www.breastcancercare.org.uk
About People’s Postcode Lottery
People’s Postcode Lottery is a lottery operator in which people play with their postcodes to win cash prizes, while raising money for charities and good causes across Great Britain and globally. A minimum of 32% from each subscription goes directly to charities, and players have raised £350 million for good causes so far. For £10 a month, players can win prizes every day: www.postcodelottery.co.uk/prizes Maximum amount a single ticket can win is 10% of the draw revenue to a maximum of £400,000. Postcode Lottery Limited is regulated by the Gambling Commission under licences number: 000-000829-N-102511-014 and Number: 000-000829-R-102513-013. Registered office: Titchfield House, 69/85 Tabernacle Street, London, EC2A 4RR.