Every May the Dying Matters coalition (which has 30,000 members across England and Wales) hosts an awareness week, providing an opportunity to talk about dying, death, bereavement and making plans for the end of life. This year’s theme is ‘The Big Conversation’.
During the week, Dying Matters (@DyingMatters) will be hosting tweetchats every day, 1-2 pm (BST), on themes around end of life and bereavement, using the hashtag #BigConversation. Find out more on the Dying Matters website.
In addition to getting involved in these tweetchats, PaPaS and Hospice UK will be publishing a number of blogs and blogshots to support the week-long campaign.
The Dying Matters coalition wants to encourage people to openly discuss their wishes around death and dying, and we also hope to raise awareness of palliative care issues.
Here at PaPaS, we are delighted to be an active part of this year’s Dying Matters week. We look forward to engaging with key organisations in this topic area and connecting with many more people who may find our evidence and information useful.
Who are we?
Cochrane is a global independent network of researchers, professionals, patients, carers and people interested in health. We gather and summarise the best evidence from research to help people make informed choices about treatment. Cochrane reviews are published on the Cochrane Library.
The Cochrane Pain, Palliative and Supportive Care review group (PaPaS) is one of more than 50 review groups. We are based in Oxford and are funded by the National Institute of Health Research (NIHR).
We publish systematic reviews of studies of interventions, including:
- palliative care for those with a life-limiting disease or illness
- supportive care of patients and significant others living with serious illness
- cancer pain.
We have also published a comprehensive, annotated database of published palliative care and end of life research – you can access the database on the PaPaS website.
Providing support for over 200 hospices, Hospice UK is the national charity for hospice care in the UK. The charity supports professionals and care providers to deliver the highest quality of care to people with life-limiting or terminal conditions and their families. Collectively hospices in the UK care for around 360,000 people every year and Hospice UK works closely with them to support their work and the development of hospice and palliative care worldwide.
Hospice UK is a founding partner of ehospice, an innovative website aiming to revolutionise access to the latest news, commentary and analysis from the world of hospice, palliative and end of life care.
What are we doing?
We’ve been busy preparing blogs, blogshots and a tweetchat to support the Dying Matters campaign.
We’ll be publishing three more blogs during the week, either here on ehospice UK or on the Evidently Cochrane website. These will cover:
- Palliative care evidence – voices of experience from Cochrane authors and editors.
- Dying at home – findings from systematic reviews.
- A summary of Dying Matters Week.
PaPaS has also prepared eight blogshots (summaries of complex evidence) for key palliative care reviews, to be published throughout the week on www.papas.cochrane.org
We will also join the Dying Matters lunchtime tweetchats, follow closely all the activity on #BigConversation and share as much as we can. As managing editor of PaPaS I will be tweeting from @CochranePaPaS, alongside assistant managing editor Kerry Harding.
Sarah Russell, head of research and clinical innovation and Hospice UK, will be tweeting all week from @learnhospice, but you might also find her on @WeEOLC and @researchospice.
On Tuesday and Friday, from 1-2pm Sarah will be contributing to the @DyingMatters tweetchats on planning and talking about end of life care.
Sarah is also co-hosting – with @Rachel_EOLP and @CompassionateCP – a tweetchat on Tuesday 10 May from 8-9pm via @WeEOLC, on the topic of #BigConversation: to be or not to be, that is the question, using the hashtags #WeEOLC and #BigConversation.
How can you get involved?
Find out more about the Dying Matters Awareness Week on the Dying Matters website.
You can read and share all of our blogs and blogshots, and join us for the tweetchats if you can.
Follow us on Twitter for the latest news and updates:
- Sarah Russell @learnhospice and @WeEOLC
- Anna and Kerry, PaPaS @CochranePaPaS
- Dying Matters @DyingMatters
Remember to use the hashtag for all of your tweets: #BigConversation.
Getting involved with Cochrane
Every time we publish a new review, we tweet about it (@CochranePaPaS). You can read and share them among your networks. Follow the hashtag #painevidence for our latest publications.
You can provide valuable feedback during the development of new reviews as a peer referee or consumer referee. Consumers are patients, carers and family members, or people seeking information about a health condition or treatment.
About the author
Anna Erskine is the managing editor of the Cochrane PaPaS group. Anna can be contacted at anna.erskine@ndcn.ox.ac.uk
The PaPaS coordinating editor is Professor Christopher Eccleston, University of Bath. The National Institute for Health Research (NIHR) is the largest single funder of the Cochrane Pain, Palliative and Supportive Care Review Group.
Disclaimer: the views and opinions expressed therein are those of the author and do not necessarily reflect those of the NIHR, NHS or the Department of Health.
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