The study – which is funded by the National Institute for Health Research, and led by a team from the Cicely Saunders Institute at King’s College London – is the first time that the effectiveness of palliative care for patients with long-term neurological conditions has been trialled anywhere in the world.
It is hoped that the research will reveal more about the needs of people affected by conditions such as Parkinson’s disease, multiple sclerosis and motor neurone disease (MND). More than 10 million people in the UK are affected by long-term neurological conditions.
Currently, people living with such conditions only receive palliative care at the very end of their life, meaning that their physical symptoms and their emotional, social and spiritual needs are not properly dealt with.
The study will show whether patients and their families benefit from a short-term integrated palliative care service. Participants will receive three visits from a specialist palliative care team over a period of 12 weeks.
Nottingham University Hospitals NHS Trust (NUH) is one of five centres across the UK taking part in the study, alongside centres in London, Liverpool, Cardiff and Brighton.
Andrew Dodsworth, a former nurse at Nottingham City Hospital who was diagnosed with MND last year, was one of the first to be recruited.
“My consultant asked if I would like to be involved in the study during one of my outpatient appointments and I didn’t hesitate to say yes,” he said. “The trial has the potential to help me and others who are in my situation.”
Palliative medicine consultant at NUH, Dr Vincent Crosby, said that Nottingham was very proud to be a partner in the study. “Palliative care is all about improving quality of life and this study is an opportunity to demonstrate the benefits of palliative care for patients with long term neurological conditions and their families,” he said.
Professor Irene Higginson, the chief investigator of the study, who holds positions at King’s College Hospital and King’s College London, said the study had the potential to change the way that patients with neurological conditions are treated.
“The quality of life for patients with long term neurological conditions is vital, and yet we don’t do enough to improve it,” she explained. “We want to test whether by providing earlier palliative care we can improve the quality of life for patients and reduce the stress on them and their families. We are excited about the potential benefits this study may have for our patients, and those around the world.”
Read more about the study on the Nottingham University Hospitals NHS Trust website or on the King’s College London website.