Access to palliative care for people with motor neurone disease in New Zealand.
OBJECTIVE
To identify the services available through hospices for people with motor neurone disease (MND) in New Zealand; to find out about the type of care and support available in each service; and to identify any barriers to access to care for these people.


METHODS
A postal questionnaire was sent to hospices and palliative care services who were listed in the Hospice New Zealand directory (N=41) in March 2004.


RESULTS
Thirty-five services returned completed surveys (85% response rate). All services responding offered care for people with MND, with a wide range of services being offered. Results indicated that for a small number their service contract was a barrier to accessing services. One identified the issue of bed availability for respite care and another expressed concern about long-term care. Other challenges noted included the high level of time and resources needed to care for people with MND; the complexity of multidisciplinary care; the knowledge of the disease process needed; the duration of the condition and the uncertainty of prognosis; the different focus of care compared to the care of people with cancer; and the ability to find appropriately skilled carers.


CONCLUSIONS
Palliative care services have much to offer in the care of people with MND particularly in symptom management, respite care, and in addressing the psychological and spiritual issues that have been shown to have a greater bearing on quality of life than physical functioning. Co-ordination of service provision and timely referral to palliative care services are essential if the optimum care is to be provided. The development of the knowledge base required for effective care, a systematic approach to providing support, and effective coordination are all essential to improve the quality of life for people with MND and their families.
McKenna
Christine
C
Department of General Practice, Dunedin School of Medicine, University of Otago, Dunedin.
MacLeod
Rod
R
D019538:Health Care Surveys; D006287:Health Planning Guidelines; D006297:Health Services Accessibility / Q000706:statistics & numerical data*; D017051:Hospice Care / Q000592:standards / Q000706:statistics & numerical data*; D006801:Humans; D016472:Motor Neuron Disease / Q000628:therapy*; D009520:New Zealand; D010166:Palliative Care / Q000592:standards / Q000706:statistics & numerical data*; D017410:Practice Guidelines as Topic; D036301:Qualitative Research; D012017:Referral and Consultation / Q000592:standards