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Compassion in Dying

@compassionindying.bsky.social
1.3K followers 368 following 122 posts

We want people to be in control of their end-of-life decisions because there is no-one better to make them.

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Compassion in Dying @compassionindying.bsky.social · 24/08/2026
New Webinar Alert! Join us on Monday the 28th of September at 13:30 for a free webinar where we consider how the current end-of-life policy agenda can close the gap between people’s wishes, policy intention, and practice. Sign up here: us02web.zoom.us/webinar/regi...
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Compassion in Dying @compassionindying.bsky.social · 10/08/2026
@charlotteaugst.bsky.social latest piece for the Future Governance Forum explores how the new Prime Minister’s approach to health policy is a helpful step towards a more community-based, preventative approach to care and treatment at the end of life.
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Compassion in Dying @compassionindying.bsky.social · 04/08/2026
What do we mean when we talk about Bridging the Gap? In our new blog we explore what our latest reports recommendation's mean within the current end-of-life policy landscape. You can read this here:
compassionindying.org.uk
What do we mean when we talk about Bridging the Gap?
The last two years have felt like a critical moment for end of life care, with a surge of public and political attention towards investing in meaningful improvements that better support people at the ...
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Compassion in Dying @compassionindying.bsky.social · 20/07/2026
Last week we published our new report amplifying the voices of the people our services support. Hear Elizabeth talk about her husband Alan’s experience of care at the end of life and how planning ahead supported Alan to ensure his decisions were respected.
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Compassion in Dying @compassionindying.bsky.social · 17/07/2026
“The challenge for those of us working to improve end-of-life care is how we address the clear gap between people’s wishes, policy intent and practice.”
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Compassion in Dying @compassionindying.bsky.social · 15/07/2026
Yesterday we published our new report - it lays bare how too many people are still dying in ways they explicitly said they did not want. Hear Usha, our Director of Partnerships and Influencing, explain why we began this work. compassionindying.org.uk/resource/bri...
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Dr Anushka Aubeelack @bumblebeenush.bsky.social · 14/07/2026
What we do with this information is of the utmost importance. If we truly want to honour informed choice and patient-led care, we need to improve our systems as soon as possible. The recommendations form a solid approach to do this. #NHS #EndOfLifeCare #InformedChoice #ImportantConversations
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Sarah Wootton @sarahwootton.bsky.social · 14/07/2026
This report should be a wake-up call for everyone working to improve experiences at the end-of-life
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Dr Anushka Aubeelack @bumblebeenush.bsky.social · 14/07/2026
Incredibly proud to be associated with Compassion in Dying who have produced another excellent report, exploring issues being faced by those who want to plan their end of life care The insights from conversations with health care professionals hit hard & I think many will empathise
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Compassion in Dying @compassionindying.bsky.social · 14/07/2026
Today, we launch our new report: Bridging the gap: How to ensure people's decisions are respected at the end of life. It shows that too many people are still dying in ways they explicitly said they did not want. compassionindying.org.uk/resource/bri...
compassionindying.org.uk
Bridging the gap
How to ensure people’s decisions are respected at the end of life
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Compassion in Dying @compassionindying.bsky.social · 08/05/2026
It’s the last day of dying matters week, this year’s theme is about conversations, we are resharing a guest blog from Jill who talks passionately about why we need to start planning ahead conversations early. #dyingmatters #dyingmattersawarenessweek
compassionindying.org.uk
Why is it important to start advance care planning conversations early and before crisis?
A guest post from Jill which asks healthcare professionals to have advance care planning conversations much earlier, before a crisis hits.
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Compassion in Dying @compassionindying.bsky.social · 22/04/2026
On #PowerofAttorneyDay, we reflect on what the people we support tell us about LPAs. Attorneys speak to us about: 👉not being recognised as decision maker 👉 not being included in best interests meetings 👉losing confidence to speak up for their loved one compassionindying.org.uk/blog-post/im...
compassionindying.org.uk
The important but challenging role of a health attorney
Our services are here for everyone, including attorneys who need support in their role. We hear from lots of attorneys who need answers, and don’t know where to turn.
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Compassion in Dying @compassionindying.bsky.social · 09/03/2026
In our latest blog Sarah White, our new Clinical Lead, explores the complex realities of dying, and shares why honest conversations about the limits of palliative care are so important if we are to ensure people can make informed choices about what matters to them most at the end of life.
compassionindying.org.uk
Rethinking palliative care: finding honesty in difficult conversations
Sarah White, our new clinical lead with 25 years of nursing experience shares some personal reflections on her experience of working in palliative care – why it matters so deeply, and why honest conve...
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Compassion in Dying @compassionindying.bsky.social · 24/02/2026
This month we have published new user-led information on assisted dying for our website. Here’s why (a thread) ⬇️ compassionindying.org.uk/blog-post/ne...
compassionindying.org.uk
New user-led content on assisted dying
Our research showed that people need clarity on what an assisted death is, and if it is currently legal in the UK.
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Compassion in Dying @compassionindying.bsky.social · 17/02/2026
🚨 We're Hiring! 🚨 We're excited to announce we're expanding our clinical team. We're looking for two dedicated and motivated nurses who'll help provide clear and practical support to people to help them make informed decisions about the end of their life.
compassionindying.org.uk
Work for us
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Compassion in Dying @compassionindying.bsky.social · 19/12/2025
As 2025 draws to a close, here at Compassion in Dying we’ve been reflecting on a significant year for personalisation and patient power in end-of-life care. Our latest blog explores some of the activities and moments we are proud of from the last 12 months.
compassionindying.org.uk
A Year of Impact: reflecting on Compassion in Dying in 2025
As 2025 draws to a close, here at Compassion in Dying we’ve been reflecting on a significant year for personalisation and patient power in end-of-life care.
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Compassion in Dying @compassionindying.bsky.social · 26/11/2025
Dying people’s voices must be at the centre of design and delivery. Our latest blog responds to the government’s prioritisation and commitment to improve Palliative and End of Life Care through a new Modern Service Framework. compassionindying.org.uk/blog-post/tu...
compassionindying.org.uk
A turning point for end of life care?
Our response to the announcement of a Palliative and End of Life Care Modern Service Framework.
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Compassion in Dying @compassionindying.bsky.social · 18/11/2025
It’s been almost two years since the HSJ published our piece highlighting how dying people are being failed by the NHS’s approach to sharing information. Unfortunately, from what we hear through the people we support, not much has changed.
hsj.co.uk
Dying people are being failed by the NHS's approach to sharing information
Usha Grieve explains how in the realm of digital health data, the spotlight on the Federated Data Platform overshadows the sluggish progress in enhancing electronic end-of-life records, hindering meaningful patient-centric change and necessitating urgent action
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Open Justice Court of Protection Project @openjusticecop.bsky.social · 06/11/2025
** New blog post - 90-year-old woman and her advance decision to refuse treatment openjusticecourtofprotection.org/2025/11/05/p...
openjusticecourtofprotection.org
P’s Advance Decision to Refuse Treatment is not valid, not applicable, and not a reflection of her past or present wishes
It seems to me that the judge was entitled to make the decision that P’s ADRT was invalid. That causes me concern because of what it means not just for P but for everyone else with ADRTs.  Do our A…
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Compassion in Dying @compassionindying.bsky.social · 06/11/2025
We're delighted to be at the @helplinesuk.bsky.social Annual Conference & Helpline Awards today. We're thrilled to be nominated for Helpline of the Year 2025 alongside AgeUK Nacoa UK Safeline UK Self Injury Support SWGfL.
Several or our staff members pictured at the conference
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Zach Moss @zachmoss.bsky.social · 27/10/2025
At @compassionindying.bsky.social we decided to FOI NHS Trusts to see their advance decision / MCA policies. Here's our thinking about why that might help us diagnose some problems and help the people we support when they have trouble at hospitals.
zachmoss.co.uk
Why (and how) we decided to submit an freedom of information request to NHS Trusts・Some thoughts
In May this year I went along to observe a hearing at the Court of Protection. It’s something we at Compassion in Dying do sometimes as the
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Amber Price @ambernurse.bsky.social · 02/10/2025
Thank you to the @nursingstandard.bsky.social for having me to write this piece. Happy to connect with any fellow nurses thinking about transitioning to work within the charity sector.
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Compassion in Dying @compassionindying.bsky.social · 25/09/2025
“We provide a human connection in a disconnected system” In this latest article from RCNi, specialist nurse Amber reflects on joining our clinical team and how prioritising people through phone-based support acts as a crucial safety net in end-of-life care. rcni.com/nursing-stan...
rcni.com
Helpline nursing: could you make the shift to a phone support role?
Helpline nursing may not involve direct patient care, but upholds the Nursing and Midwifery Council code by providing compassionate support, helping people navigate complex healthcare systems and clarifying confusing information about treatment options. A former NHS nurse and midwife who works as a helpline specialist nurse at the charity Compassion in Dying explains the difference between her former and new roles, and what nurses can expect in helpline roles, from crucial skills and the experience required to pay and work-life balance. She sees her role as ‘providing connection in a disconnected system’, helping people maintain dignity and control, even in a healthcare system under pressure. Includes practical tips for nurses who want to pursue a career in helpline nursing.
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Compassion in Dying @compassionindying.bsky.social · 02/09/2025
Last month @nationalvoices.bsky.social published a blog where we explored what information and support people need in order to understand assisted dying laws that are currently being considered across the British Isles. compassionindying.org.uk/blog-post/as...
compassionindying.org.uk
Assisted dying: how do we meet people’s needs and why the third sector should lead the way
As assisted dying laws are being debated in Parliaments across the British Isles, we asked the people we support what information and support they need to understand the law and have conversations wit...
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Compassion in Dying @compassionindying.bsky.social · 20/08/2025
Thanks @nationalvoices.bsky.social As assisted dying laws are being considered across the British Isles, our latest blog explores what information and support people need to understand the law and have conversations with healthcare professionals about assisted dying.
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Compassion in Dying @compassionindying.bsky.social · 16/06/2025
A very happy birthday to the Open Justice Project team 🎉🎉🎉 An incredible initiative backed up by selfless, tireless volunteers. Long may it continue!
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Compassion in Dying @compassionindying.bsky.social · 02/06/2025
These conversation will continue and we will be reaching out to all webinar attendees so we can capture their insight as we move forward with the idea of a public health campaign to help people make the end-of-life decisions that are right for them. Thanks for joining us today.
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Compassion in Dying @compassionindying.bsky.social · 02/06/2025
Mandy reflects on changes she has made to her clinical practice, informed by the experience of her mother's death. These conversation are having an impact on patients on her unit, and helping people end their life in a way that is in line with their wishes.
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Compassion in Dying @compassionindying.bsky.social · 02/06/2025
Usha: we are not talking about corralling people into a certain set of decisons...one size does not fit all.
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Compassion in Dying @compassionindying.bsky.social · 02/06/2025
Q. What support do people in communicates need to make this work and is there a risk this process is an "anglophone" one?
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Compassion in Dying @compassionindying.bsky.social · 02/06/2025
Tom: Clinicians are often worried about bringing up the subject. So they need tools to support that conversation ; to ask questions and be ready to listen .
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Compassion in Dying @compassionindying.bsky.social · 02/06/2025
A key theme for theme from the questions: that people record their wishes do not always trust that they will prevail. What can we do to ensure they are?
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Compassion in Dying @compassionindying.bsky.social · 02/06/2025
The challenge is for the public to have these conversations, and the challenge for clinicians to listen and relinquish a little control.
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Compassion in Dying @compassionindying.bsky.social · 02/06/2025
At its most raw, when CPR cannot reverse the dying process it can be a distressing for everyone involved. The goal is "appropriate CPR" being available to all. With emphasis on "appropriate "
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Compassion in Dying @compassionindying.bsky.social · 02/06/2025
The appropriateness of CPR is something that often comes up in conversations at the end of life. But Tom has also seen when people have received CPR that was not right for the person.
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Compassion in Dying @compassionindying.bsky.social · 02/06/2025
Now we are hearing from Tom Wood, Tom is a nurse and clinical lead for the Resuscitation Council. Tom will be talking about what the resuscitation council have learnt through developing and delivering the RESPECT process
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Compassion in Dying @compassionindying.bsky.social · 02/06/2025
Professor Kellahear makes the comparison with the health and social care system at the beginning of life - its not one size fits all. Over the past 10 years we have been building a system for the end of life.
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Compassion in Dying @compassionindying.bsky.social · 02/06/2025
"we like to be where people are" - a public health approach to the end of life care recognises the reality of how people experience dying and bereavement .
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Compassion in Dying @compassionindying.bsky.social · 02/06/2025
Now Professor Allan Kellahear is speaking, Allan is the Professor of End-of-Life Care at Northumbria University and the founder of the international public health movement in palliative care.
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Compassion in Dying @compassionindying.bsky.social · 02/06/2025
"lived experience has to be at the centre and forefront of your campaign, ‘like the writing in a stick of seaside rock’."
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Compassion in Dying @compassionindying.bsky.social · 02/06/2025
"Audiences will be at different starting points – some nearer to change than others, some with many complex barriers"
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Compassion in Dying @compassionindying.bsky.social · 02/06/2025
"So what are some key learnings which could be relevant to any ‘campaign’ you might want to run? "Any ‘campaign’ should not be a one-off endeavour, but a take a long term approach.
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Compassion in Dying @compassionindying.bsky.social · 02/06/2025
This resulted in: - A 15% reduction in average levels of mental health discrimination - The public who were campaign-aware were more comfortable disclosing mental health issues to their families and friends, at work and seeking help from a GP.
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Compassion in Dying @compassionindying.bsky.social · 02/06/2025
"Mind and Rethink got together to set up a national programme called ‘Time to Change’ which we ran from 2007-2021. With levels of funding £4m-£5m per year we had very defined outcomes with ambitious targets to reach every four-years.,
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Compassion in Dying @compassionindying.bsky.social · 02/06/2025
"In the mid 2000s, mental health was in the ‘too hard to do’ basket for the public, employers, and the media. Stigma and discrimination were common-place"
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Compassion in Dying @compassionindying.bsky.social · 02/06/2025
"Most of my career has focused on making a very taboo topic (mental health), OK to talk about, giving the motivation and tools for talking and then changing behaviour"
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Compassion in Dying @compassionindying.bsky.social · 02/06/2025
Now we are hearing from Sue Baker, she set up the Time to Change campaign in England that led to a "sea change" in public attitudes and reductions in discrimination in England.
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Compassion in Dying @compassionindying.bsky.social · 02/06/2025
Rekha shares the lessons she has learned working with racially minoritised communities, lessons that may help frame and inform this discussion.
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Compassion in Dying @compassionindying.bsky.social · 02/06/2025
Now we are hearing a short message from Rekha Vijayshankar, reflecting on her work with racially minoritised communities in relation choice and agency over health and explorig how vital it is to not approach behaviour change with a one-size fits all mentality.
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Compassion in Dying @compassionindying.bsky.social · 02/06/2025
"We need investment in culture change – how we all in society understand and talk about our end-of-life treatment and care. " @UshaGrieve
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