Progressive neurological conditions: guidance for palliative and end of life care

On these pages you will find guidance, resources and key considerations to support professionals involved in the care of people with progressive neurological conditions. It is designed to help those working across health and care settings deliver coordinated, person-centred palliative and end of life care.

Caring for people with progressive neurological conditions

People living with progressive neurological conditions often experience complex, changing needs that affect their physical function, communication, cognition, nutrition and emotional wellbeing. Palliative and end of life care can play an important role from diagnosis onwards, supporting people to live as well as possible while planning ahead for their future needs.

Understanding the condition beyond the diagnosis 

A diagnosis alone rarely captures how a neurological condition affects someone's daily life. Caring for a person with a progressive neurological condition can place significant carer burden on family and friends and they will require support in their caring role.

Healthcare workers can expect to work with uncertainty as the person navigates their disease journey. It is advisable to link with the care centre that is responsible for the persons care, the community multidisciplinary team supporting the patient and if possible, it is advised to start palliative principles early for these patients. 

High quality palliative and end of life care for people with progressive neurological conditions is proactive, rehabilitative and person centred, and starts from diagnosis onwards.

Acknowledgements

We've developed these resources using the learning from our Progressive Neurological Conditions programme, with the generous support of our partners and donors for this programme, including the Freemasons' Charity.