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Charity News

It’s Time to Talk

One of the effects of the COVID-19 pandemic is that collectively there will be more conversations about death and dying.  They will be challenging conversations because even though death is part of the natural process of living, sadly many people will be facing death before their natural time and this will be very distressing.

Now more than ever it’s a good idea to have open, honest talks about what is important to us and those we love. Then, during these difficult times, we can hope for the best whilst we’ve planned for the worst.

Starting the conversation

  • So how do you have these difficult conversations? They take all of us out of our comfort zone.
  • How do you even bring up the subject of death? We do not want to add to the general level of panic, but we do want to help people to be in some way mentally prepared.
  • How do we communicate with confidence and empathy?
  • How do we communicate with openness, compassion and dignity?

 

Ideas about how to do this include

  • Choosing a time when the person you want to talk to isn’t stressed or upset
  • Can we talk? I know it’s not easy but I want to help.
  • Don’t push it. If they don’t want to talk now – try again later, or another day
  • What is your understanding of the current situation?
  • Make sure you listen. Its easy to forget to listen when you’re starting a conversation that you are worried about having
  • Have you thought about what you would like to happen if you become very ill?
  • Make sure you offer reassurance and comfort. Talk about what YOU would want, make it about everyone, not just them.

 

Some things that might be useful to think about are

  • If you become very ill – would you prefer to be cared for at home or go to hospital? (It’s important to gently explain that if someone goes to hospital they should be aware that for the time being they won’t be allowed any visitors)
  • Would you feel more comfortable in a hospital environment with medical staff?
  • Would you feel more comfortable at home with a family member or friend even if you get so ill that you may die?
  • Before making the decision that you would rather stay at home, you or your family MUST contact your GP (think about the best way to do this – email may be the most effective) to discuss this decision with them and to find out what community care can be provided for you.
  • Your family could contact your local Hospice, or local authority to find out more about what support is available in your community
  • Its important to find out what community support is available in your area – these things are constantly changing, so its hard for us to give any definite advice here.
  • Have you got a will? If so where is it? Make sure your family know where to find it
  • If not, can you find someone to help you make one? It’s very easy to do… and will be a great help to your loved ones in future.
  • Do you have a Lasting Power of Attorney for Finance or Health & Wellbeing? If so where do you keep the originals?
  • Have you kept a log of passwords for your computer, social media, bank accounts etc? If so, jot them down on a piece of paper, and leave in an envelope with your will.
  • Consider writing an Advance Decision to refuse treatment (also sometimes known as a Living Will, or an Advance Directive). Be clear about what you DON’T want to happen to you.

Take some time to talk about different choices you might need to make in the coronavirus outbreak. The services that are usually on offer may have changed.

It’s very difficult to generalise as each hospital and community will have variations in how they are having to operate and deal with things in real time. See what you or your loved ones can find online about current provision in your area. 

These conversations may be the most important you have, don’t miss the opportunity and remember:
It’s important to hope for the best, having planned for the worst.

Don’t forget to consider the positives:
By planning ahead and having conversations now, should the worst happen, you will:  

  • Enable your family or loved ones to honour your specific needs and wishes
  • Reduce your loved one’s stress and anxiety by having important information accessible and clear
  • Reduce the time required to search for information and enable loved ones to sort out your affairs
  • Enable loved ones to progress with arrangements freeing up their time to grieve
  • Give your family peace of mind that they did the right thing

Small acts of kindness and friendship really matter

Before coronavirus came along, our work focused on providing support to the many patients who die alone in hospital. During the COVID-19 pandemic, the teams of Butterfly Volunteers are unable to support patients, and we feel anxious that patients and family will be alone at this time due to the lock down in hospitals.

We hope this information will help you manage your anxiety and understand what decisions you and your loved ones need to discuss. Please do contact us via our contact page if you would like us to address any other topics. We will do our best to provide as much clarity as we can within the constraints of the subject.

Our work is entirely supported by donations. Help us continue to provide support to patients at the end of life, and their families by donating now.

Thoughts from our Patrons

“We are living through unprecedented times in this modern era, which just a short while ago were unthinkable and the remedy unimaginable, a total lockdown of western European countries. As a result, these are confusing and worrying times. Our sentiments in this guidance are designed to help you navigate a range of issues that most of us find difficult to discuss. We hope you will find it of assistance”.
Dr Peter Carter

“It’s so important to have these conversations now, don’t put them off. Having them in a crisis is never good. If you have had a conversation revisit it in these unique and challenging times. Do it now and put your plans away in a box, then they are there if and when you need them.”
Claire Henry

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Message To A Loved One Service

Anne Robson Trust and Princess Alexandra Hospital partnership launches a messaging service to enable families to contact their loved ones in hospital during the Covid-19 outbreak.

An Interview on BBC Radio Essex

More information and the contacts details are available here.

 

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Support for our work by The National Lottery Community Fund – on BBC Radio Norfolk

Following a press release by the National Lottery announcing that ART has been awarded funding to support work across East Anglia – BBC Radio Norfolk invited ART Director, Liz Pryor, to speak about the charity on their Drive Time show on Friday 14th February.

They also spoke to Butterfly Volunteer Mary and heard about the impact of her role. Listen to the interview here.

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Anne Robson Trust Receives National Lottery Funding

The Anne Robson Trust has received £95,000 of National Lottery funding to support its work in providing one-to-one compassionate listening, comfort and companionship to people nearing the end of their life in hospital.

Liz Pryor, Founder of Anne Robson Trust, said:

“We are extremely excited to receive transformational funding from The National Lottery Community Fund. We are a small, but rapidly growing charity, and are keen to expand our work across the East of England and beyond. This funding allows us to engage an East of England Area Manager to oversee work, and provide much-needed support and guidance to the Butterfly Volunteer Coordinators we work with.”

Please see the National Lottery’s press release here.

 

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Autumn 2019 Patient Experience Library Newsletter

The Anne Robson Trust are proud to feature in the latest edition of the Patient Experience Library newsletter.

Human experience matters most

You can argue with figures and statistics, but you can’t argue with personal experience”.

Click the link below to take a read…

https://mailchi.mp/7310e938983c/human-experience-matters-most?e=33f6cf4951

 

 

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Local Hospital & Charity Partnership Leads The Way for End of Life Care

Contact: Liz Pryor, liz@annerobsontrust.org.uk or 07971 817552

Contact: Nicki Harris, nicolette.harris1@nhs.net or 01279 827467

 

In partnership with The Princess Alexandra Hospital NHS Trust (PAHT), The Anne Robson Trust this week is launching a Centre of Excellence for Butterfly Volunteer coordinator training at the hospital located in Harlow.

 

Half of all deaths in the UK take place in a hospital bed, many of those patients have few or no visitors at all in the last days of life. The Anne Robson Trust works with hospitals to set up and embed teams of butterfly volunteers, led by dedicated coordinators, to support patients and their loved ones at this extremely challenging time.

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Dying Matters Week 2019

Dying Matters Week 2019 is looking like it’s going to be a busy one for The Anne Robson Trust!

 

We are very excited to be fully booked during Dying Matters week 13th – 17th May 2019, delivering The “D” Word Workshops every day during the campaign to raise awareness and start the conversations about death and dying.

We will be discussing this years theme – Are We Ready? during the session on paperwork and why its so important if you are approaching the end of your life.

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Spotlight On Roger Mawle

1.     WHO ARE YOU AND WHAT IS YOUR ROLE IN ART?
 
My name is Roger Mawle and I am very proud to have recently been appointed as a Trustee of the Anne Robson Trust. I work in the business world so, together with the other trustees, I have mainly been helping us think through how we can set the organisation up to grow sustainably so that the wonderful Butterfly Volunteers can have a positive impact on as many lives as possible across the country.  

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Why I Love My Job: Liz Pryor on John’s Campaign

Liz Pryor, Director of The Anne Robson Trust, shares the inspiring story of how, in the wake of an experience that shouldn’t have happened, she has worked for change to stop it being something so often (and so painfully) repeated:

“I’m very touched that Julia has asked me to write a blog post for the John’s Campaign website. Having been a supporter of John’s Campaign since the outset – I am humbled by the sheer scale of Nicci & Julia’s achievements.

Our story is a familiar one, unfortunately, but one with a light at the end of the tunnel, I think.”

You can read the whole article on John’s Campaign by clicking here.

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2018…. We made it through our first year!

Amazingly, it has just been the ninth anniversary of the death of my mother, Anne Robson. I can’t quite believe that it’s been so long… but then I think about all that’s happened in those nine years, and realise that we’ve come quite a long way.

 

Since setting up the team of Butterfly Volunteers in Hertfordshire in May 2016, we seem to have been on rather a fast paced roller coaster!

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Spotlight on Professor Nancy Fontaine

Each Newsletter we will be shining the spotlight on someone connected with our organisation, and next up it’s Professor Nancy Fontaine…

 

  1. Who are you and how are you connected to the Anne Robson Trust?

I am Professor Nancy Fontaine, Chief Nurse of Norfolk and Norwich University Hospitals Foundation Trust, Professor of Nursing at the University of Essex and Anglia Ruskin University. This is my third Chief Nurse post and my determination is to achieve consistent, outstandingly safe and bespoke care for every patient and family. That every Nurse, Midwife, Allied Health Professional, Pharmacist & Bio-Scientist realises their true potential; achieves their academic and career aspirations; that they do the job they love every day as I am privileged to do. I am privileged to be a Chief Nurse and serve, communities and the profession; equally I feel privileged to be a Patron of the Anne Robson Trust.

 

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Actively Dying: What Does it Mean?

You may have listened to the feature about our work on BBC Radio 4’s You and Yours programme, which aired on Friday 14th September, 2018 (listen again here).

A number of people who heard the interview have asked what I meant when I said that it can take people up to 3 days to “actively die”. I thought it might be useful to provide our supporters with some information about this phrase – clearly it is not one that everyone uses…

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A Squeezed Hand and a Smile

Our ART Butterfly Volunteers provide compassionate listening, comfort and companionship for patients in the last few days and hours of life, many of whom have few or no visitors, and would otherwise be alone.

Some patients give very little or sometimes no response to our volunteers, so are we making a difference?

 

“Sometimes I wonder when I’m with a patient who doesn’t seem to be responding if I’m helping, or if they would really like me to be there if they could say.

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6 Months and Counting

Since starting work at The Princess Alexandra Hospital, Harlow in mid January 2018 – exactly 6 months ago this week – our fantastic team of ART Butterfly Volunteers have provided:

– 607 individual visits – to 247 patients who are nearing the end of their life
– That averages out at 23 visits per week, to just under 10 patients
– AND they have spent 355 hours by the bedside – which is nearly two hours per patient on average

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Why are we so passionate about what we do?

If you are wondering why the team at ART are so passionate about providing compassionate care to hospital patients in the last days and hours of their life, read on.

Below is some of the visit feedback from the fantastic team of ART Butterfly Volunteers at The Princess Alexandra Hospital Harlow. These stories speak for themselves… (names, genders and some personal information may have been changed to protect patient/family confidentiality)

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St. Clare Hospice

The Team at ART are always on the look out for similar schemes to ART Butterfly Volunteers, and this week Liz met St Clare Hospice CEO, Sarah Thompson, and Stacey Towler, who leads on their Compassionate Neighbours project. Once we had had a chance to hear about each others work – we agreed that the Compassionate Neighbour team really are the prequel to the ART Butterfly Volunteers. Spending time with people, in their own homes, in the weeks and months after their diagnosis.

ART have had to disappoint so many people who are keen to join our team, as spaces are limited, since the beginning of the year – and St Clare need more volunteers to become Compassionate Neighbours – so this seemed like an obvious solution!

We would love to hear from you if you would like more information… Here is a message from Stacey Towler, Compassionate Neighbours Manager at St Clare Hospice, Essex.

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The ART of Compassion

An exciting week at the Anne Robson Trust…

Our new volunteer Claire started working with Liz last Monday to help with admin and general office stuff… there is so much to do when setting up a new charity, one needs to be a jack of all trades – we are always amazed at how generous people are with their time – thank you Claire… We have much to do – everything from setting up online filing systems, to spreadsheets, fundraising, writing business plans, getting systems in place for projects and corresponding with members of the public who are keen to learn more about what we are doing… to working on the website with our fab tech wizard Phil (who is also a volunteer), and helping him design marketing materials to promote our work – and that just touches the surface!

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Butterfly Volunteers: Truly Inspirational

Working with volunteers who support people facing the end of their life is such an inspiration.

When I first started doing this work in early 2016 I was worried that it was too much of “an ask” to find people to take on the role. How wrong was I?

The team, efficiently led and looked after by Jo, have been actively supporting dying patients, and their loved ones since mid January, at The Princess Alexandra Hospital in Harlow. The 18 volunteers on the team have taken to their new role as if they’ve been doing it for years.

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The Month It All Started

What an absolutely amazing first 3 weeks for Butterfly Volunteers at The Princess Alexandra Hospital….

  • 59 individual visits to patients in the last days of their life
  • 27 visits to patients who would otherwise have been alone
  • 40 hours of 1:1 care for patients and their loved ones
  • A referral from A&E for a patient who was admitted nearing the end of their life – and we were able to find someone to sit with them
  • We had our first team meeting – & Jo made cake!
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Half of All Deaths Occur in Hospitals

Nearly half of all deaths in England occur in hospitals – 223,007 out of a total of 469,975 in 2014.

 

For this reason, trust boards, managers and clinicians should recognise that a core responsibility of hospitals is to deliver high-quality care for patients in their final days of life and provide appropriate support to their families, carers and those close to them.

Government policy in recent years has reinforced this requirement.

© Healthcare Quality Improvement Partnership 2016 -End of Life Care Audit – Dying in Hospital report for England: executive summary

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Jo’s Story

Why I’m so passionate about the Anne Robson Trust

I feel as if the skills and experience I have built up over the years have all been leading to my role within the Anne Robson Trust.

I have seen death from many perspectives, as a nurse and as a midwife. Expected deaths and tragic unexplained deaths such as the loss of a baby. I’ve had various personal experiences too, and have been at the bedside of relatives as they died. These personal experiences varied greatly in how well everything and everybody around the death were helped, or not. One of the most poignant was my beloved grandmother who was left confused and frightened on a ward, and when we eventually got her home to care for her in her last days of life she calmed down, surrounded by love, and had a peaceful death.

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