End of Life Care Research Project at Northumbria University funded by Marie Curie. Realist Evaluation of Rapid Response Services. Tweets from Kathryn McEwan.
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Looking forward to seeing you all at #EAPC2023 - both @atkinson_joanne and Kathryn McEwan from our team will be there - our poster presents some early findings on **the importance of continuity of care in community end of life care** for more info see: prezi.com/view/krM1We5uA7ZkK…
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Rapid Response EoLC Research retweeted
Help please!
We have had an amazing response to our @BereavementECfA study BUT we have gaps.
We are looking for more 1)males
2) those from Polish, Traveller or Roma communities
3) those bereaved by child loss/suicide/murder/manslaughter/RTC.
Please retweet 🙏🏽🙏🏽
👇🏽👇🏽
We are thankful for the overwhelming response to our study and grateful to everyone who has trusted us with their stories and experiences.
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Valuable report from @TheKingsFund highlighting the contributions of unpaid carers - 30% of whom involved in giving medicines. Let’s not forget all the other hidden work of medicines management involving carers: decision making, ordering/accessing supplies, organisation, disposal
Unpaid carers contribute the equivalent of 4 million paid care workers to the social care system. But who is classed as an unpaid carer? What kind of support do they can and are they able to access it? We explore these questions in our report ➡️ kingsfund.org.uk/insight-and…
ALT The graphic depicts a range of carers, with individuals that they are supporting. Below is the question :'Who are people caring for'. The answers include: Mother or mother-in-law (34%); Husband, wife or partner (18%), Father or father in law (`6%), Son or daughter (14%), Friend (10%), Grandparent (7%), Neighbour (4%), Brother or sister (7%), Pther family member (4%), Someone else (2%), Grandchild or great grandchild (1%). There is also the question: 'what tasks are carers performing?'. Answers include: Keeping people company (69%); Keeping an eye on them and other practical help (67%); Physical help (34%); Giving medicines (30%); Personal care (28%); Dealing with care services and benefits (26%).
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@libby_sallnow gives us a data master class and cracks both how it can feel and where the approaches to care and support has to lie! Not a straight or neat algorithm in sight. #PCC #lancetvalueofdeath virtual conference 👏🏼
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In Rwanda, when you are well, you belong to yourself but when you are sick, you belong to your family @ntizimira uses this approach every time he meets a patient and family #23OPCC
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Next week (Thursday pm) I'll be talking about doing ethnographic research in the context of palliative and end of life care. The talk is online & free - link here to register. eventbrite.be/e/anthropologi…
#palliativecare #endoflifecare #researchmethods #ethnography #socscieolc
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Looking forward to starting our
@MarieCurieEOLC project
on end-of-life care for people in vegetative & minimally conscious states: - supporting patients, families & staff.
If you want to participate, & access free training, join our launch seminar in Oct
cdoctraining.org.uk/mci-sign…
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I am thrilled to release the first in a v special series of podcasts: Dying at home, what you need to know and how to be prepared. Thank you @MagnifMidlife for being such a great partner in this project
🎧speakforme.co.uk/podcast-epi…
#AdvanceCarePlanning
@kathrynmannix
@hospiceUK
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Some reflections from me and @SamQuinn91 on the @Dying_Margins study as it officially comes to an end after 4 years! @MerrynGott @DrEmmaCarduff endoflifestudies.academicblo…
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Travelling to #DDD16 in person this week in Padova? Check out our Open Access articles if you want something to browse on your journey! tandfonline.com/action/showO…
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Yup.
Data for the head, stories for the heart.
We need data to show gaps, measure progress, reduce inequity.
But until the data are translated into stories, we won't understand why all that matters. Stories are the levers for action.
Bravo @CormacRussell
2 ways of knowing: 1 studies 2. Stories. Most studies lead to more data; stories are the seeds of social change. Cold data is mostly devoid of meaningful stories abt specific communities. In contrast, warm data (cf @NoraBateson) seeks to reveal local meaning. No data w/o stories.
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Bertrand Russell said in 1932: “The idea that the poor should have leisure has always been shocking to the rich.” That idea is alive and well. theguardian.com/commentisfre…
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We understand that the summer holidays might not be a relaxing break if you’re caring for someone with terminal illness 💛
Here are some tips to help you look after yourself: bit.ly/459pct0
ALT Text reads: Tips for caring for yourself as a carer Try talking to someone you trust or call our support line on 0800 090 2309. Take time for yourself, find a little time each day for normality. Don't forget about your health. Look after your own body and mind too. Ask for help. Talk to healthcare professionals as additional support may be available.
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📨Where do you turn when your grief feels like too much?
Our Senior Policy & Research Manager Rachel Warren highlights @theUKCB's call for statutory bereavement leave in The Guardian ⬇️
theguardian.com/lifeandstyle…
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The key elements which signal improved care outcomes are: care coordination; care planning; digital health; and using methods to prepare, inform and motivate patients and families. #hpm #hapc buff.ly/3QuGhcG
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Compared to patients with cancer, hospitalized patients without cancer were referred to specialist palliative care at a lower functional status, a poorer anticipated prognosis, and more likely for end-of-life care. #hpm #hapc #palliativecare buff.ly/43RycBR
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Anyone and everyone who works in palliative care should listen to @KStajduhar compassionate-communitiesuk.…. She describes so clearly and with great eloquence why we need to change the model of palliative care, so that no one is marginalised. No one should be left behind.
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Thanks for the follow @eolc_rapid.
You may be interested in MyGriefToolbox.ca developed by Paramedics for Paramedics to build skills for constructively approaching own, pt and family grief. Free. Certificates of completion. Evidence informed.
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1/2 So we opened an interesting debate on #gooddeath and feel it just skimmed the surface. @ericaborgstrom & I have captured it in an @BMJ_SPCare blog blogs.bmj.com/spcare/2023/08… and...
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Home deaths increased for everyone in the UK, but the increase was greater for those living in the least deprived areas compared to those living in the most deprived area. #hpm #hapc buff.ly/3Dwgfy2
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in our findings, direct line to call a specialist palliative care nurse for support and advice was very important to informal carers at home at end of life- they often had existing relationships, so continuity, and experience, time. and skills to give advice, signpost, or visit.
Additional comments on this thoughtful conversation.🧵
1. Despatch of a paramedic crew doesn't always come from 999 call. 111 calls can be escalated/trigger an emergency response.
Caller may want clinician advice, fully aware of anticipated dying & DNACPR decision.
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