The Brain Tumour Charity have collaborated with NHS England to better understand the role of Clinical Nurse Specialists (CNS) and Keyworkers who work with people affected by brain tumours.
NHS England will use the findings of this work to inform new thinking on how to improve access to a CNS or Keyworker for everyone affected by cancer.
The role of a CNS and Key Worker varies across neuro-science centres and in response to the needs of the patient.
People affected by a brain tumour told us that they think the primary responsibilities of the CNS role is to provide information and advice, act as a single point of communication and support and co-ordinate care.
Our research shows that access to a single point of contact (typically a CNS) can make a significant and positive difference to a person's access to information, experience of symptoms and emotional and mental health.
Yet we know that access to a single point of contact varies. For example, just 53% of people with a low grade tumour have access to a CNS compared with 75% of people with a high grade brain tumour.
The England Cancer Strategy recommended that every person affected by a cancer have access to a CNS or Keyworker from diagnosis onwards. Our work with NHS England is a first step in this process.
We organised two digital workshops, one for people affected by brain tumours and another for CNSs, held an online survey and submitted a written response on behalf of those affected.
NHS England will run pilots of models which they hope will address problems around access to a single point of contact.
We will monitor the developments of this work to ensure that the CNS is properly resourced and able to attend to the needs of people diagnosed with a brain tumour.