The majority of patients have a named specialist nurse when they are first diagnosed with the deadly disease, according to Breast Cancer Care.
But a survey by the charity revealed 65 of 156 NHS trusts and Health Boards across England, Scotland and Wales do not provide specialist nursing care for people with incurable secondary breast cancer.
And patients admitted they “find my own way through the dark days” amid a lack of support.
Samia al Qadhi, chief executive of Breast Cancer Care, called for specialist care for all patients with incurable breast cancer and urged hospital bosses to ensure the right services are available.
She said: “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.
“It is outrageous that even though specialist nursing can dramatically improve qualify of life for women and men with incurable breast cancer, so many do not have a nurse they can count on for essential support.”
Almost half of NHS trusts and Health Boards which provide breast care services said specialist care reduces the likelihood of patients spending long periods in hospital.
Yet 76 per cent admitted there is not enough specialist care.
And while 33 per cent of trusts do have a specialist nurse who divides their time between people with primary and secondary breast cancer, nearly half of these nurses spend less than a quarter of their time with people with incurable breast cancer.
Laura Ashurst, 49, has been living with incurable secondary breast cancer for almost 10 years.
She said: “When I had primary breast cancer there were two nurses and I was given a phone number for anything that 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.
“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.”
An NHS England spokesperson said: “Evidence shows that access to a Cancer Nurse Specialist or other key worker supports a positive patient experience.
“We are working closely with others across the NHS to agree the best way to widen access to specialist support for all people living with cancer, including those living with secondary breast cancer, as part of our plans to transform cancer services across the board.”
Daily Express :: Life and Style Feed
