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Report shows people with advanced MS miss out on access to palliative care services

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Triggers for palliative care, a report by Marie Curie, suggests that people with neurological conditions including MS are missing out on care that can make a real difference to quality of life. It shows that there is limited understanding from both health professionals and the public of what palliative care can offer, who can benefit and when the time is right time to access this holistic care.

The report suggests that people's awareness of palliative care is often associated cancer and end of life care. In reality the goal of palliative care is broader and encompasses achieving the best possible quality of life for an individual and their family through management of symptoms and by providing emotional and spiritual support. Palliative care can begin early in the course of the condition where understanding and management of more complex symptoms is required.

This report highlights the issues of limited access to timely palliative care for people with MS despite experiencing symptoms including pain, recurrent infection, swallowing problems, emotional and psychological difficulties that palliative care can help with. Research has demonstrated that receiving earlier palliative care can improve symptoms and reduce the burden for care givers. A flexible approach to involving of palliative care services is often required for people with MS as individual needs vary throughout the course of the condition.

Triggers for palliative care makes a number of recommendations including:

  • commitment from UK governments to provide resources to ensure all those with a palliative care need can access appropriate services regardless of their condition
  • development of stronger relationships between condition specific health professionals (such as MS specialist nurses) and palliative care specialists
  • that all health bodies recognise the importance of ensuring that everyone understands what palliative care is, what it can offer people across all disease conditions and how it can be accessed.

Amy Bowen, MS Trust Director of Service Development commented "Palliative care can be a vital element of improving quality of life for people managing more advanced symptoms of MS and also for their families. Access to this care is essential and it is important that people with MS, their families and health professionals understand what palliative care services can offer."

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