Dr Simone Veronese, co-chair of the group gives this group update:
The EAPC Reference Group for Neurology has been busy over the last few months and is increasingly involved in activities, projects and ideas within the neuropalliative care world.
The EAPC has a close relationship with the European Academy of Neurology and in February 2023 palliative care was chosen by the EAN as the topic of the month. The EAN Specialist Panel for palliative care, which I have the honour to co-chair together with Dr Ludo Vanopdenbosch, organized a webinar on the role of palliative care in Parkinson’s Disease, in collaboration with EAPC. This took place and the end of February, many attended and the recording is available at the following link; https://eancampus.ean.org/course/view.php?id=1580 . The webinar looked at the role of palliative care for people with PD, and the care at the end of life and in pain control.
The EAN also hosted interviews on palliative care:
PC in Huntington disease: Marianne Visser interviews Astro Arnesen (president of European Huntington Association)
https://eancast.simplecast.com/episodes/ep-34-palliative-care-in-huntington-disease-X_SD8sma
Chronic neurological diseases in the elderly: Ed Richfield https://eancast.simplecast.com/episodes/ep-35-chronic-neurological-diseases-in-the-elderly-yKerRnUq
Hot current topic: PC in MS Solari Alessandra
https://eancast.simplecast.com/episodes/ep-36-palliative-care-in-multiple-sclerosis-5V3hayVQ
There have been other EAPC webinars over the last year, with over 150 people attending from all over the World and many more watching later – these are all available as pre-recorded podcasts by the following link
- General introduction of PC in neurology: David Oliver
https://eancast.simplecast.com/episodes/ep-33-basics-of-palliative-care-jGdvL0ge
- Palliative care for ALS/MND – models of care, symptom management, psychosocial issues
- Models of palliative care – Outpatient clinics, specialist hospital units, collaboration with neurology services
We are planning to spread these contents as much as possible, therefore we invite you to share the links to all possible interested parties.
The Reference Groups, in collaboration with the EAN, also undertook a survey on the involvement of palliative care with neurology- a comparison of UK, Switzerland and Italy, and these results were published in Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration late in 2022.
Another significant publication from the SP is a letter to the editor of the European Journal of Neurology, first author Katarina Rukavina about Neuropalliative care in times of war.
Katarina has also proposed to write a position paper on the topic “How can we provide care for people with long-term neurological disorders in a health-care system that prioritises acute care?”. This is again a cross sectional topic that might raise the role of palliative care in many neurological conditions. She will draft the paper late in May after she will have completed her PhD Thesis on Pain in PD. We invite all EAPC members to collaborate, if interested, by making contact with her at katarina.rukavina@kcl.ac.uk or simone.veronese@fondazionefaro.it
Alessandra Solari is leading an Italian National trial on ACP in multiple sclerosis which has recently completed the enrolment and whose protocol is available here. This may be extended across Europe over the coming months.
Two interesting publications related to the involvement of stakeholders in the formulation of the clinical questions for the Italian guidelines for palliative care in primary brain tumours have recently been published and can be found here and here.
We would finally like to ask you all to actively participate in the activities of the Reference Group by commenting on the actual activities, making new proposals, raising ideas and providing feedback related to your own field of experience.
You are warmly invited to attend to the Open meeting titled “Challenges in Symptom Management” that will be held at the next EAPC congress in Rotterdam in Van Beuningen Zaal, on Friday, June 16, 13:00 – 14:00. This will be a joint initiative of the EAPC Reference Group Neurology and Palliative Care/European Academy of Neurology (EAN) and will be co-chaired by Prof David Oliver (UK), Ludo Vanopdenbosch (Belgium) and myself.
Please feel free to write to the co-chairs of the joint panels. We copy our personal emails that you can use to communicate with us, and we’ll be happy to share your content within the management group.
We wish you all the best and hope for a fruitful collaboration
Prof David Oliver drdavidoliver@gmail.com
Ludo Vanopdenbosch ludo.vanopdenbosch@azsintjan.be
dr Simone Veronese simone.veronese@fondazionefaro.it
