A recent report by Marie Curie fellows organization suggests that those suffering from neurological conditions such as multiple sclerosis are missing out on care that could make a major difference in the quality of their lives. When it comes to palliative care, the report contends that there is a limited understanding about the need for it among both public policy makers and health professionals. In a recent post by the MS Trust, the organization seeks to highlight what palliative care can offer, who can benefit from it and when is the right time to access this type of holistic care.
According to the report, people often associate palliative care with cancer treatment and end of life care. However, the truth is that the goal of palliative care is much broader and includes achieving the best quality of life possible for patients and their families by managing symptoms and providing spiritual and emotional support. Palliative care can start sooner to help manage a condition even in its early stages — particularly progressive ones such as MS.
The report also emphasizes the issues concerning limited access to timely palliative care for those suffering from multiple sclerosis despite having symptoms like pain, swallowing problems, recurrent infection, and emotional and psychological obstacles that palliative care can treat. Research has shown that receiving earlier palliative care can improve symptoms and decrease the burden for caregivers. For patients suffering from multiple sclerosis, a flexible approach for palliative care services is required and the intervention might change over time according to the course of the disease.
Suggestions for improved palliative care services include:
- more commitment from health authorities to provide resources to everyone with palliative needs so they can have access to more appropriate services independently of their condition.
- advancement of stronger relationships between palliative care specialists and condition-specific health professionals.
- all health agencies should recognize the relevance of making sure that everyone understands the concept of palliative care and what it can provide to people and how it can be accessed.
The MS Trust Director of Service Development, Amy Bowen, noted: “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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New Zealanders Neil Barnett and Russell Watts, who are both living with Multiple Sclerosis, will join the crew sailing the 67-foot sloop Oceans of Hope on the Darwin, Australia to Singapore leg of its round-the-world voyage to change popular perceptions regarding MS. Mssrs. Barnett and Watts were welcomed aboard the yacht on July 5 for their four-week sailing adventure, joining a crew of eight others, including five persons who have been diagnosed with MS. Mr. Barnett, 58, who says he has been sailing on and off since he was 13 years old, had actually sailed in Oceans of Hope — then named Motorola — in the 1988 BT Challenge from Edinburgh, Scotland to Plymouth, England via London Tower Bridge.