20 April 2017
Charity warns of gulf between nursing care for incurable and primary breast cancer
Three quarters (76%) of NHS Trusts and Health Boards say there is not enough specialist nursing care for people with incurable secondary breast cancer, reveals charity Breast Cancer Care.
Worryingly, close to half (42%) of organisations surveyed do not provide specialist nursing care for people with incurable breast cancer, in stark comparison to the majority (95%) of people with primary breast cancer having a named clinical nurse specialist for support.
This is despite half (49%) of NHS Trusts and Health Boards saying a main benefit of specialist nursing is reducing lengthy periods in hospital – often unnecessary if symptoms and treatment are managed well – simultaneously improving the experience of women and men with incurable breast cancer and saving the NHS money by freeing up beds.
The first ever survey of NHS Hospital Trusts and Health Boards with breast care services across England, Scotland and Wales also found many breast cancer nurses caring for people with incurable breast cancer feel ill-equipped to meet their needs.
And while a third (33%) have a specialist nurse who divides their time between people with primary and secondary breast cancer – nearly half (47%) of these nurses spend less than a quarter of their time with people with incurable breast cancer.
Breast Cancer Care warns this gulf in care means thousands of people with incurable breast cancer are not getting the care and support they need to live well with the disease for as long as possible.
Laura Ashurst, 49 years old, from North Yorkshire has been living with incurable secondary breast cancer for almost 10 years. She says:
'When I had primary breast cancer there were two nurses and I was given a phone number for anything I needed at all. With my secondary breast cancer diagnosis this support is just not there. There’s no one person with all the specialist skills to help me through.
'Being told I had incurable secondary breast cancer felt like going into the abyss. It is hugely isolating. What I need most is emotional and psychological support, yet I still don’t have a specialist nurse. No one I can ring for day-to-day support or questions, or to point me in the right direction for other information. I’ve had to find my own way through the dark days.
'As time goes on living with this disease is getting harder, not easier. I live in small windows of time between my check-ups. Nursing support is vital to help you live every day and should be there for everyone.'
Samia al Qadhi, Chief Executive of Breast Cancer Care, says:
'These findings highlight the worrying truth – care for people with incurable secondary breast cancer is not good enough. Our survey revealed nurses often lack crucial training to coordinate the complex care and treatment, help people manage often debilitating pain or have conversations about dying.
'And it is outrageous that even though specialist nursing can dramatically improve quality of life for women and men with incurable breast cancer, so many do not have a nurse they can count on for essential support. Our tailored and trustworthy support services are vital to help women and men live their lives now but it’s clear that urgent improvements to care are needed.
'We are calling on NHS Clinical Commissioning Groups and Health Boards to ensure specialist nursing care is available for all patients with incurable breast cancer and that the right breast cancer services are in place in their hospitals to meet patient needs. Only then will everyone living with incurable breast cancer get the care and support they need.'
The fourth report in Breast Cancer Care’s Secondary. Not second rate. campaign is available at breastcancercare.org.uk/secondary
Mum-of-two Caroline Humber, 47 years old from Leicestershire, was diagnosed with incurable secondary breast cancer in February. She says:
'I was devastated to find out I have secondary breast cancer in my brain. I was diagnosed in A&E and it was a total shock. There is no specialist secondary breast cancer nurse at my hospital, so at a time I really needed support I felt abandoned.
'I have to follow up my appointments and scan results and don’t have anyone to call with my questions about treatment options. It’s upsetting I’ve had to initiate everything myself and look for my own support. Having one nurse to coordinate things would make it all so much easier.
'My cancer means I’m not able to work, have lost my independence and have limited time with my family and I’ve been left to deal with the distress and anxiety on my own. I feel totally let down by the lack of dedicated nursing support, it is so important when you’re living with incurable breast cancer.'
For further information, please contact:
Sophie Softley Pierce, PR Manager, Breast Cancer Care
020 7960 3505 (out of hours 07702 901 334)
Notes to editors
Figures from a Breast Cancer Care survey by Apteligen. Fieldwork was undertaken between February and August 2016.
The survey was sent by email to all acute NHS trusts with breast care services in England (137 NHS trusts) and all NHS health boards with secondary breast cancer provision in Scotland (12). In Wales the survey was sent to all health boards (7) and the Velindre NHS Trust. There was a 100% completion rate across Scotland and Wales, and a 99% completion rate for England, giving a total of 155 responses.
For each organisation we approached Clinical Nurse Specialist, lead cancer nurses and, in some, cases, directors of nursing where no other cancer nurse contact was known.
In-depth interviews were carried out with eight NHS Trusts and Health Boards.
All percentages calculated by Apteligen and rounded to the nearest whole number, for more information please contact Sophie Softley Pierce.
CPES data for primary breast cancer access to a nurse: 95% of primary breast cancer patients were given the name of a clinical nurse specialist who would support them through their treatment. National Cancer Patient Experience Survey 2015, available at http://www.ncpes.co.uk/index.php
About Breast Cancer Care
When you have breast cancer, everything changes. Time becomes measured in appointments. The next scan. The next results. The next challenge.
At Breast Cancer Care, we understand the emotions, challenges and decisions you face every day. So, from the day you notice something’s not right to the day you begin to move forward, we’ll be here to help you through.
Whether you want to speak to our nurses, download our specialist information or connect with volunteers who have faced what you are facing now, we can help you feel more in control.
For care, support and information from day one, call our nurses free on 0808 800 6000 or visit breastcancercare.org.uk