Article Text
Abstract
Background MND sufferers benefit from specialist PC input at various points during its trajectory with varying degrees of involvement the authors wanted to optimise and homogenise technical and human resources to integrate them in a single model to offer the right continuing care to this group of patients and their families. Referral criteria were mere recommendations developed by the different MND Units' Coordinators, not formalised;. independent criteria could be enough to support referral.
Aim To create a common protocol of care for all MND Units and PC teams. To encourage the early detection of palliative care needs for this patient's group. To know the best point at which to include these patients in regional PC program.
Methods Several meetings were held incorporating members from HC Teams, Hospital Teams, public and private inpatient units, Primary Care, Neurologists, monographic MND units and PAL24. Together they have designed and started to implement: Organisative Model. Assistential Model. Pathway definition 24 h specialist access and care Taylor made electronic systems.
Results Trigger or inflexion points to inform the decision making process as to when to refer to PC have been established and incorporated in the Madrid Adult Referral Form. An urgent need to create inpatient facilities -with technical, material and human resources-to cater for the needs of this group of patient was identified: Regular inpatient care and respite care.
Conclusion 1. Madrid has achieved its first ever MND PC joint project 2. Close collaboration and coordination between all professional groups involved ensued and helped agree the following:
▶ Referral criteria.
▶ MND training for PC professionals.
▶ Need for PC professionals to gain experience in MND Units.
▶ To offer workshops run by MND experts to PC professionals.