The value of working with charities and voluntary agencies
Individuals with neurological conditions have particularly complex and diverse needs and diagnosis often results in profound life changes which can affect an individual’s relationships, career prospects and expectations for the future.
The recently published National Service Framework (NSF) for Long-Term Conditions (Department of Health, 2005) states that good communication and the provision of appropriate information are essential features of a quality care service; however, information continues to be given a low priority in the NHS. This is evident from the survey conducted by the Neurological Alliance (2001). Less than a quarter of respondents were happy with the information they received about their conditions from the NHS and felt that voluntary organizations provided the best support.
However, it must be recognized that individuals often do not absorb all of
the information they are given at time of diagnosis and, therefore, the NHS should not be held solely responsible for the provision of health information. Patients should be given the opportunity to discuss their diagnosis at a time that is convenient to them and from a source that they choose, for example, a specialist health organization.
Transition
Three years ago I made the transition as a neuro nurse in the clinical setting to the charitable sector working for the Brain and Spine Foundation with the specific role of providing information and support via a helpline. I am in the advantageous position that I have time to spend with patients discussing and explaining all aspects of neurological and neurosurgical conditions. Issues discussed range from washing hair following a craniotomy, to the best places to obtain travel insurance, to the diagnosis of motor neurone disease. However, it still shocks me to realize just how isolated and unsupported neuroscience patients can be.
Unfortunately, I find myself fighting to prove my worth and knowledge to fellow clinical colleagues, who often do not realize the valuable contribution that charities and voluntary organizations can make to a patient’s experience. The recent publication, Action on Neurology (Department of Health, 2005), suggests that when a patient is informed about their condition they have a better understanding of when and how to seek help and can play a more active role in their care and treatment. However, anecdotal evidence continues to suggest that health professionals are suspicious of signposting patients to external organizations and rarely do so. This is incredibly frustrating because organisations such as the Brain and Spine Foundation are there to assist the NHS and bridge the gap between hospital and home. I have lost count of the times a helpline user has said, ‘It’s great to be able talk to someone, if only the ward had given me your number and booklet.’
Idealistic
The NSF outlines standards of care that we all know patients should be entitled to, but it has received much criticism for being unachievable and too idealistic. However, I believe that, as nurses, we do have the power to actively implement the standards by widening our outlook, collaborating and making use of each others’ skills, knowledge and resources in order to meet the needs of patients.
Publications such as Getting the Best from Neurological Services neurological Alliance, 2003), the British Journal of Neuroscience Nursing and groups like the RCN Neuroscience Nurses’ Forum increase our awareness of each other and allow us to share experiences in order to provide our community with a voice with which we can influence and change the future care of neuroscience patients.
References
Department of Health (2005) National Service Framework for Long-Term Conditions. The Stationery Office, London
Neurological Alliance (2001) In search of a service:The experiences of people with neurological conditions. Neurological Alliance, London
Neurological Alliance (2003) Getting the best out of neurological services; a guide for people affected by conditions of the brain, spine and nervous system. Neurological Alliance, London
NHS Modernisation Agency (2005) Action on Neurology: Improving Neurology Services—a Practical Guide. The Stationery Office, London
