There is a “gulf” between the specialist nursing support available for patients with incurable breast cancer and that accessible for those with the primary stage of the disease, a charity has warned.
Three quarters of trusts and health boards acknowledge there is not enough specialist nursing care for patients with incurable secondary breast cancer, according to a survey for Breast Cancer Care.
“Care for people with incurable secondary breast cancer is not good enough”
Samia al Qadhi
It commissioned the first ever survey of NHS hospital trusts and health boards with breast care services across England, Scotland and Wales.
The research, carried out last year between February and August, was completed by 100% of providers in Scotland and Wales, and 99% in England, giving a total of 155 responses.
The charity noted that, worryingly, 42% of organisations surveyed did not provide any specialist nursing care for patients with incurable breast cancer.
This was despite 49% admitting that a major benefit of specialist nurses was reducing lengthy hospital stays and simultaneously improving the experience of patients, and saving the NHS money.
It also found many breast cancer nurses caring for people with incurable breast cancer felt ill-equipped to meet their needs.
The survey revealed that nurses often lacked crucial training to co-ordinate the complex care and treatment, help people manage often debilitating pain or have conversations about dying.
“Nursing support is vital to help you live every day and should be there for everyone”
The charity said its findings were in “stark comparison” to level of specialist nurse support on offer for patients with primary breast cancer.
For example, it noted that 95% of primary breast cancer patients reported having a named clinical nurse specialist for support in the 2015 National Cancer Patient Experience Survey.
The survey also found that a third of organisations had a specialist nurse who divided their time between patients with primary and secondary breast cancer – but those with the latter lost out.
Nearly half of these nurses spent less than a quarter of their time with people with incurable breast cancer, compared to primary cancer.
Breast Cancer Care warned that the “gulf in care” meant thousands of people with incurable breast cancer were not getting the care and support they needed to “live well” for as long as possible.
Its new report – titled Secondary. Not second rate – quoted Laura Ashurst, 49, from North Yorkshire has been living with incurable secondary breast cancer for almost a decade.
She said: “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.
Lack of nurse support for incurable breast cancer
“Being told I had incurable secondary breast cancer felt like going into the abyss. It is hugely isolating,” she said. “What I need most is emotional and psychological support, yet I still don’t have a specialist nurse.
“Living with this disease is getting harder, not easier,” she said. “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, added: “These findings highlight the worrying truth – care for people with incurable secondary breast cancer is not good enough.
“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,” she said.
“We are calling on clinical commissioning groups and health boards to ensure specialist nursing care is available for all patients with incurable breast cancer,” said Ms al Qadhi.