Brain tumour patients benefit from clinical nurse specialists.
hen a patient is diagnosed with a life changing or limiting disease, there are usually more questions than answers. 'Am I going to die? is often the first, although it is not always voiced. Some focus on the practical; 'When will my treatment begin? 'How often will I have to come to hospital? 'Will I be able to work? Others have worries that are less easily addressed. 'How am I going to cope? 'What shall I tell my children? 'What will it feel like to lose my hair? As a clinical nurse specialist (CNS) in neurooncology, part of my role is to answer all of those questions and many more. My CNS colleagues and I support patients with a primary brain tumour, acting as a single point of contact with the multidisciplinary team (MDT).The patients we work with face a difficult and complex journey, often involving a wide range of health professionals including oncologists, surgeons, occupational therapists, physiotherapists and counsellors. Each team member has specific expertise that is invaluable to our patients. What we bring as CNSs is both an overview and a continuous presence throughout treatment and beyond. At the Royal Surrey County Hospital NHS Foundation Trust, either I or one of my CNS colleagues in neuro oncology meets every patient with a primary brain tumour at the time of their diagnosis. They are often given a vast amount of information in their first consultation with an oncologist, making it a frightening and emotionally overwhelming experience in some cases. Our job is to ensure patients have understood what their oncologist has told them, partly by providing written information after their consultation, and to support their decisions about treatment and care. We listen to their concerns and fears and act as advocates to ensure they have access to the right support services at the right time, calling on others in the MDT if urgent interventions are needed. We also have strong links with colleagues in the community, working together to implement the best supportive care at home to ensure the patient is safe and avoids unnecessary admission to hospital. Access to a CNS is certainly not universal, either within the field of neuro oncology or any other specialty. However, I hope our role will earn new recognition following publication of a report by The Brain Tumour Charity (2016) which shows the significant impact we can have on patients' experiences. The report, Finding Myself in Your Hands. The Reality of Brain Tumour Treatment and Care, is underpinned by a survey of more than 1000 people living with a brain tumour. It found that patients with access to a CNS were likely to report a lower symptom burden and experience better mental and emotional health than those without. Respondents included those with high grade and low grade tumours, making the survey the most comprehensive of its kind. Overall, 58% said they had access to a single point of contact in their healthcare team, usually a CNS, whom they could approach with any concerns. Those respondents were almost twice as likely as those without a CNS or other single point of contact to say that their brain tumour had no impact at all on their emotional or mental health (10.6% compared with 5.5% Among respondents whose symptoms had an impact on their daily life, those with access to a CNS were 1.5 times more likely to report their symptom burden as low. Those without a CNS or other single point of contact were 1.5 times more likely to report a high symptom burden, and 2.7 times more likely to disagree that they had good access to information on managing symptoms. They were also 4.7 times more likely to disagree that the health professionals they dealt with understood brain tumours. The report recommends a UK wide review of the capacity and sustainability of the brain tumour CNS workforce. It is a move I would welcome not only as a neuro oncology CNS but on behalf of patients and health professionals in every sphere, whose lives can be made easier through team work, mutual understanding and good communication. BJN
British journal of nursing