Dr Sean Hughes, Research Associate (InSup-C), International Observatory on End of Life Care, Lancaster University, UK, continues our series on the InSup-C project on integrated palliative care.
Researchers from 10 European partners are working to discover the best ways to provide integrated palliative care to those with advanced cancer and chronic disease. The study – InSup-C – aims to build on examples of good practice from across the continent. InSup-C is funded by the European Commission under the Seventh Framework Programme (FP7). It will run for four years, coordinated by Dr Jeroen Hasselaar from the Netherlands in collaboration with the expert chairs of five work streams.
We know that well delivered palliative care can help ease the burden on people approaching the end of life. But getting professionals and organisations to work together in a coordinated way can be a challenge.
As a palliative care social worker in the UK, I became aware that peoples’ experiences were varied. Sometimes a person had a range of services that helped them at the right time, in the right place, and to the right extent. Others seemed to have little effective support and experienced services that were duplicated, disorganised or absent. Sometimes people didn’t know who should be providing what, amongst the professionals that came to help. On some occasions, professionals and agencies appeared to be working in opposition to one another and confusion reigned. There were also examples of good and effective services and these are the models that InSup-C will explore – a task I will help with in my research associate role.
Work has begun on examining the evidence for integrated palliative care in previously published research. This will establish a list of service models that already exist. Once this work is complete researchers in five countries will follow some patients during their contacts with palliative care services. This will help our understanding of what it’s like to live through this experience from the service user point of view.
We anticipate that our study will identify what works best. This information will be presented on InSup-C’s dedicated website that we are currently developing. In time, a checklist on the site will enable services to measure themselves against agreed standards for integrated palliative care. For professionals, an e-learning platform will support practice development and encourage them to influence local service improvement. A book of best practice examples, to be published towards the end of the project, will be supported by journal articles, presentations at conferences and other publicity. A meeting of those who make and influence health and social care policy at national and international levels will be held in order to maximise the impact of the study.
InSup-C is a truly collaborative effort that has the potential to improve the care we offer to those facing chronic, long-term decline and death across Europe. If we can ease this passage, we will have succeeded.
We welcome your comments and views. Please comment below or, if you prefer, you can email me direct.
Join us in Prague…
If you’re attending the EAPC World Congress in Prague 2013 please come along to the InSup-C meeting and share ideas with us on Saturday 1 June. (Please note that this is a closed meeting; however, the last 30 minutes – 13h30 to 14h00 – are open to anyone who wishes to attend. Room 222).