Background Motor neuron disease (MND) is a progressive neurodegenerative disease. The incidence of developing MND is approximately 2 per 100,000 people with 7 per 100,000 people living with the disease worldwide. The MND Association of standards of care document recommends that referral is made to the Specialist Palliative Care (SPC) Team for all patients soon after diagnosis and for psychological support at the time of diagnosis. A recent all-party parliamentary group inquiry found that: good specialist palliative care provides value for money by reducing interventions, reducing calls to emergency services and reducing hospital admissions. Unfortunately access to SPC varies greatly across the UK and there are no standardised referral pathways.
Aims Currently the mid-Yorkshire SPC team see only a few patients with MND each year. This audit was intended to establish the common symptom management problems and determine which patients are referred to SPC, and by which methods. An additional short survey to both the Palliative Care and MND Teams was performed to highlight staff views with regards to access to appropriate expertise and services at the appropriate time.
Results/Conclusion A small number of patients with MND are referred to the SPC team in mid-Yorkshire and consequently confidence levels among the SPC staff looking after them can be low. Introducing the role of specialist palliative care soon after diagnosis would allow these patients to have choice regarding their care and educate them that palliative care is not just about death and dying but about enhancing quality of life.
Recommendations More collaborative working between the two teams, review of current referral pathways and SPC attendance at MND clinics to improve communication and also the holistic care for these patients. A formal education programme is also needed with refresher/update sessions for all staff to improve confidence and skill levels.
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