Hope on the line
Paula Madden says dealing with young people who have a poor prognosis is always tough
As senior nurse adviser on the Beating Bowel Cancer helpline, former Nursing Standard nurse of the year Paula Madden has a rewarding but often challenging role.‘I really enjoy making a difference to someone’s life and being part of the patient’s whole pathway. But dealing with people who have a poor prognosis, especially when young, can be extremely hard,’ she says.
‘I recently spoke to someone on the helpline who was terminal and the same age as me. She had two young children and wanted to know how to tell them that she wouldn’t always be around. These are tough questions to answer, but it is what patients need to know.’
Ms Madden, who is on a one-year career break from her role as colorectal nurse consultant at London’s Imperial College Healthcare NHS Trust, has almost 30 years’ experience in cancer nursing.
She first became interested in the specialty when she worked on a colorectal surgical ward at Ipswich Hospital in Suffolk, shortly after qualifying in 1990. After working as a ward sister at a private hospital in Surrey, she took up a post as nurse specialist in stoma care at Heatherwood and Wexham Park Hospital in Berkshire.
In 1996, she became coloproctology nurse practitioner at the trust before moving to Imperial in 2000, where she became the first colorectal nurse consultant in England.
‘During my time as a stoma nurse, I realised that bowel cancer patients without stomas had no ongoing support,’ says Ms Madden. ‘I was establishing a service to address this when I was contacted by Lord Ara Darzi, who was setting up such a service at St Mary’s Hospital in Paddington. He asked me to join him, and we set up one of the first specialist services for bowel cancer patients in the country.’
At Beating Bowel Cancer – the UK support and campaigning charity for everyone affected by the disease – Ms Madden leads the only nurse-led specialist helpline for bowel cancer in the UK.
Her role involves raising awareness of bowel cancer among clinicians and the general public by speaking at health conferences and events, developing projects and activities, and maintaining the charity’s high quality, one-to-one advice and support services by acting as a supervisor and mentor to the charity’s other nurse advisers, who communicate with people who are concerned about symptoms or have been diagnosed.
‘You are dealing with a patient’s emotional and mental health as well as their physical health, so it is a holistic package of care,’ says Ms Madden.
‘I spoke to a woman on the helpline a few weeks ago who said she felt as though she was treated as a disease, rather than a person, at one hospital. But she was coping much better now that she had moved to a new hospital where they treated her as an individual. They looked at all her needs, not just the physical ones, which is so important to patients.’
One of the charity’s main aims is to promote early diagnosis. Screening has been shown to reduce the risk of dying from the disease by 16%, and the charity was instrumental in introducing a national screening programme that has now been implemented across the UK.
‘If I could change anything, I would ensure that screening uptake reaches 100%,’ says Ms Madden.
‘I also want everyone to stop being too embarrassed by bowel cancer symptoms to go to the doctor, and for GPs to be more aware of the symptoms and the need to refer patients quickly.’
She would also like to see a smoother transition from hospital to home. ‘Patients need to know what support is available locally. In a lot of cases, better communication is needed between the hospital and the patient’s GP and support services.’
Ms Madden believes it is essential that nurses caring for patients with cancer also have the right emotional support, and that they know when to ask for help.
‘Make sure you have an experienced nurse you can get support from,’ she says. ‘It is okay to admit there are times when you are not coping. This is not a weakness, and problems arise when you try to keep this to yourself.’