A study has found wide variation in how much palliative care and neurological teams provide joined-up services at eight sites in England and Wales. There was least coordination in services for people with MS.
Palliative care aims to support people and their families by providing physical, psychological, spiritual and emotional care. While traditionally associated with end of life care in cancer, there’s a growing recognition that palliative care services can benefit people with other conditions and may need to be available earlier in the course of their disease. However, little is known about the extent to which palliative care is available to people more severely affected by a neurological condition, such as Parkinsons disease, motor neurone disease or MS.
This study looked at eight centres in England and Wales where both palliative care and neurology services were offered. The teams were asked to provide details of their services which allowed the researchers to assess how much integration there was between palliative care and neurology.
The researchers found wide variation in the services provided and integration between neurology and palliative care. The variation was not only between the eight sites but also between the different neurological conditions, with motor neurone disease having the strongest integration. Integration was most limited for multiple sclerosis, with only two of the eight sites having formal links between the two services.
A number of potential barriers to closer integration were suggested including that palliative care specialists might be reluctant to take on the care of non-cancer patients, neurologists might be reluctant to refer people to palliative care for fear of diminishing their hope and people with neurological conditions might be reject referrals because they associated palliative care with end of life. Attempts to improve integration would need to take account of these potential problems.
The results of this study have helped the investigators design the next phase of their research which will look in more depth at some of the issues involved in palliative care and neurology. The OPTCARE Neuro study aims to find out whether patients and their families would benefit from a short-term integrated palliative care service. People more severely affected by a neurological condition will have three visits from a specialist palliative care team over a period of 12 weeks. OPTCARE is due continue recruiting participants until the end of 2016.
Amy Bowen, Director of Service Development at the MS Trust says,
"Many people with MS are living with a number of difficult and disabling symptoms, many occurring simultaneously. They need access to well-coordinated services that help them cope with the many physical, emotional and social challenges they face. Closer working with palliative care services, and a clear understanding that palliative care has much more to offer than just end of life care, would be a positive step toward improving care for people with more advanced MS."
The MS Trust’s MS Forward View project is looking at how to improve care for everyone with MS and has had a particular focus on the needs of people with advanced MS, who often struggle to access the services they need.
Read more about MS Forward View.
- BMC Neurology 2016;16:63. Full article How integrated are neurology and palliative care services? Results of a multicentre mapping exercise.
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