Quality requirement 9: Palliative Care

People in late stages of LTNCs are to receive a comprehensive range of palliative care services when they need them to control symptoms, offer pain relief and meet their needs for personal, social, psychological and spiritual support, in line with the principles of palliative care.

Easy access to comprehensive palliative care services

 

Support for carers of adults with end-stage neurological conditions

 

 

Indicators of progress

Abbott and Carpenter (2009) report use of children’s hospices for young men with Duchenne Muscular Dystrophy.

Leigh (2011) reports that the King’s Centre for Palliative Care in Neurology has developed a referral pathway that has been proposed for MS which could be adapted for PD. This suggests a process of assessment, review and, if appropriate, referral for specialist palliative care assessment and/or continuing follow-up. This pathway includes appraisal of symptoms, disease progression, communication and cognitive problems and complex treatment decisions.

 Inhibitors of progress

Jackson (2011a) found little evidence of timely psychological support being made available to carers of adults with end-stage progressive conditions; specifically MND, MS and Huntington’s Disease.  Access to palliative care services that could offer counselling support both before and after bereavement was a key unmet need in this group.

 

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