Compassion in Dying

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

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.

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.

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.

“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...

Our latest blog explores how we can meet people’s needs and why the third sector should be leading the way.

If you are interested in exploring collaborative solutions to support the people you work with, we would love to hear from you.

Providing accessible and clear information to the public about options available to them as they approach the end of life is crucial. If we are to ensure people are supported if the law changes, we need to start thinking now about what people need.

People tell us that they want to be able to make informed decisions about their end-of-life treatment and care. But, despite there being information they would like to know about the proposed change in law, currently they are not able to find what they need.

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...

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...

If you are interested in exploring collaborative solutions to support the people you work with, we would love to hear from you.

If we are to ensure people are properly supported in the event of law change, it’s up to us as a sector to listen to what people want and need. We need to begin work now to ensure that open conversations are fostered and that people have the information they need to understand their options.

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.

A very happy birthday to the Open Justice Project team 🎉🎉🎉

An incredible initiative backed up by selfless, tireless volunteers. Long may it continue!

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.

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.

Usha: we are not talking about corralling people into a certain set of decisons...one size does not fit all.

Q. What support do people in communicates need to make this work and is there a risk this process is an "anglophone" one?

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 .

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?

The challenge is for the public to have these conversations, and the challenge for clinicians to listen and relinquish a little control.

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 "

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.

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

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.

"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 .

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.

"lived experience has to be at the centre and forefront of your campaign, ‘like the writing in a stick of seaside rock’."

"Audiences will be at different starting points – some nearer to change than others, some with many complex barriers"

"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.

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.

"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.,

"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"