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Anne Robson Trust

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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A Letter to my Grandchildren

We are constantly humbled by the amazing work of the Butterfly Volunteers. A member of one of the teams recently told us about a letter he helped a patient to write to her Grandchildren in the days before she died…. We have changed names and some of the detail but the emotion comes through in every sentence…

 

To my dearest grandchildren,

In hospital today I was visited today by a volunteer. I asked him to write a few things down for me. We spent an hour or so thinking about you all and this is what we talked about.

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Memory Giving – Making it easy to donate in memory

It has become common to donate to charity in memory of a loved one at the time of the funeral.

Memory Giving aim to make the process appropriate, safe and secure for donors whilst supporting the family’s chosen funeral director to coordinate on your behalf.

Memory Giving is used by many of the leading funeral companies in the UK. The role of the funeral director is radically changing with an increased emphasis in marking a death with a more personal and individual event. Giving to charity in memory continues as a principle constituent of commemoration and recognition of the person, their values and their wishes.

The Anne Robson Trust has been lucky enough to be chosen by a number of families who have set up donation pages via Memory Giving.

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2 in 5 Hospital Patients Never Get a Visitor

2 in 5 hospital patients never get a visitor, but it’s ok as help is at hand…

 

Listen in to John Gilligan, Butterfly Coordinator at the James Paget University Hospital, explain a little bit more about his role and how we are making a real difference with James Hazell of BBC Radio Suffolk.

 

Click here to listen in from 1hour 40mins…

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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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Butterfly Volunteers make a huge impact!

Since our last post on FAB NHS Stuff in September 2018 our little charity has come a long way!

Our work at The Princess Alexandra Hospital NHS Trust, in Harlow, continues to make a massive impact on patients, families and staff. The team of 32 Butterfly Volunteers, expertly led by their dedicated Coordinator, Nicki Harris (pictured with members of the team) have supported approximately 700 patients in the last days of life – sitting with them for an incredible 950 hours! The message that comes back from the volunteers over and over again is that patients and their loved ones are so grateful to be offered support, company and a hand to hold at this difficult time.

Read our full article at the FAB NHS Stuff website here.

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BBC Feature from the James Paget Hospital in Gorleston

Listen to BBC Radio Norfolks’ Nick Conrad explore the impact of our amazing Butterfly Volunteers on the county’s health service.

Click here for the full interview – listen from 1 hour 36mins

About the programme

Join Nick every weekday morning from 6.30am for your biggest listen at Breakfast. With the latest local stories that matter together with regular travel and weather updates plus the latest sports news, you’ll be the first to know in Norfolk.

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Are we ready? ehospice speaks to Liz Pryor

If you were told you only had a few weeks to live, would your family and friends know what kind of funeral you want?

Do you feel comfortable talking to them about what your final wishes are? In short, are you ready? Liz Pryor, founder of the Anne Robson Trust, tells us about planning for death so you can live your life to the full.  

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People Do Extraordinary Things

On Sunday 14th July, Director of ART’s brother in law, Richard Pryor, (pictured doing his day job…. selecting wine for the menu at Cafe Rouge.. amongst other things!) is doing a ridiculously gruelling, extraordinary thing…
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Butterfly Volunteers are “Love in Motion”

Since February 2019 Butterfly Volunteer Coordinator Emma Taylor has been working away at the Norfolk & Norwich Hospital, recruiting and training a brand new team of Butterfly Volunteers. We recently asked her to write about her experiences so far….

 

“I’ve worked with volunteers for most of my career and I have seen first-hand the huge impact they can have on organisations. They give up their time and skills for no other reason than because they want to and I think that’s something pretty spectacular in itself.

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ART Receives Award from Prime Minister

The Prime Minister has today, 21 May, recognised ART for coordinating volunteer visits to hospitals.

 

Liz is the founder of the ‘Anne Robson Trust’ which coordinates volunteer visits to hospitals to offer company and comfort to patients at the end of their lives. Following the death of her mother Anne Robson in 2010, Liz worked with the local NHS Trust on improving the hospital experience for terminally ill patients. Starting initially as a small group of volunteers, Liz soon realised that, for many patients, a volunteer was their only visitor. Liz set up the ‘Anne Robson Trust’ in 2017 and has since trained and led volunteers who have offered more than 700 hours at patients’ bedsides at the Princess Alexandra Hospital. The volunteers have carried out 1,300 visits to 450 individual patients across the hospital. This year the project is expanding to other hospitals with the creation of volunteer coordinator roles.

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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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ehospice: An ART Feature

Here at the Anne Robson Trust, we are very proud to be featured on ehospice.com, a globally run news and information resource committed to bringing the latest news, commentary and analysis from the world of hospice, palliative and end of life care.

“There are too many people dying in hospitals without any support at all and without any family” ART Director Liz Pryor explains. “I’d like to see as many hospitals as possible setting up and running teams of volunteers to support their palliative care team, and patients and their families.”

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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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ART Butterfly Volunteers Won £618 at the February Harlow Soup!

We were very pleased to be invited to join in on a fundraising evening, local to The Princess Alexandra Hospital, called Harlow Soup, on Thursday 28th February.

Jo did a brilliant job with her four minute pitch, and we were delighted to win the money collected on the door – which totalled £618!

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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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ART Hits the National Press

BEL MOONEY writes a heartfelt but uplifting despatch from the hospital end of line

 

Bel Mooney is an journalist and broadcaster. She currently writes a column for the Daily Mail and met with the ART Team earlier in the month at the Princess Alexandra Hospital in Harlow, home to one of our first ART Butterfly Volunteer projects.

Click here to read the article written for the Daily Mail.

“We’re so proud to feature in the national press and look forward to continuing our work across the UK to make sure no one dies alone.” – Liz Pryor, Director of the Anne Robson Trust

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Social Change Awards 2018 Finalists

A message from our Director, Liz Pryor…

“I am writing to everyone involved with ART, and everyone we have trained as a Butterfly Volunteer in 2018 –  we need your help!

Jo and I are only just coming down from our high of winning the Fab NHS Stuff Award last week – and it seems we’re on a roll as far as awards are concerned!

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Fab NHS Stuff WINNERS

A while ago our work was selected as the ‘pick of the week’ by an organisation called Fab NHS Stuff, which is run by Roy Lilley and Terri Porrett. They run an annual awards event, which took place on 15th November 2018, where all 52 projects (one for every week of the year) are in the running for their Piccalilley Award of the year.

We won!

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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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Diary of an ART Butterfly Volunteer: Entry 4

Reflecting back during my time as a Butterfly Volunteer at PAH, I remember being really apprehensive the first time I knocked on a patient’s room door when there were visitors with them.

Not only do I know how difficult and heart-breaking it is to be at the bedside of a loved one when they are dying, it was important to me that they didn’t feel like I was intruding.

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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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Diary of an ART Butterfly Volunteer: Entry 3

We have spent 7 months at the Princess Alexandra Hospital in Harlow where our ART Butterfly Volunteers have provided 738 individual visits to 283 patients who are nearing the end of their life. One of the team, Tanya Cotter, has offered to write a short account of each visit. Here are her thoughts after her third shift:

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Palliative Care Guidelines

Back in 2015, new guidelines on end of life care were published by the National Institute for Health and Care Excellence (NICE – https://www.nice.org.uk/). These guidelines were designed to replace the controversial Liverpool Care Pathway (that’s for another blog post!), which was phased out in 2014.

The main recommendations from the guidelines were:

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The impact of ART on Specialist Palliative Care Team at PAH

Gill Hutchinson started working with the Specialist Palliative Care and End of Life team at The Princess Alexandra Hospital NHS Trust in May 2018 as Macmillan Clinical lead.

We asked her to let us know how she finds working in a hospital with a group of specialist volunteers on hand to support her team… This is what she said…

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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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Liz Pryor Live on BBC Radio

The National Health Service turned 70 years old today, and as such ART Director Liz Pryor has been chatting with Nick Coffer on BBC 3 Counties Radio about working in NHS hospitals, End of Life care, and how you can help make sure no one dies alone.

You can listen to the whole interview here…

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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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Diary of an ART Butterfly Volunteer: Entry 2

The new cohort of ART Butterfly Volunteers are starting to visit patients at Princess Alexandra Hospital, Harlow. One of the team, Tanya Cotter, has offered to write a short account of each visit. Here are her thoughts after her first shift:

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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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Butterfly Volunteer Team Meeting

Whilst Jo & her husband, Paul, were having afternoon tea at The House of Lords (yes, really!) by invitation of our esteemed Patron, Dr Peter Carter, we had a very good meeting in the Lecture Theatre, Parndon Hall, Princess Alexandra Hospital, on a sunny afternoon in early June. We missed you Jo!

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A Difficult, Heart-Warming Experience

Here’s a difficult, yet heart-warming story from four ART Butterfly Volunteers put together by Co-Ordinator Lead, Jo Corscaden.

This account documents ART Butterfly Volunteer visits to a patient who has been identified as nearing the end of his life. Each entry is written by a different volunteer –  the story highlights the teamwork and understanding of each member of our team.

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ART Butterfly Volunteer since May 2016

 

My name is Joy – and I very am proud to have been an ART Butterfly Volunteer since May 2016!

In my day-to-day life, I work as an holistic practitioner. I support people as they approach the end of their life. I also very much enjoy working with young adults who are living with a learning disability and volunteer as part of the bereavement team for Isabel Hospice.

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Spotlight on Shahid Sardar

Each Newsletter we will be shining the light on someone connected with our organisation, and first up it’s Shahid Sardar, Associate Director for Patient Engagement at the Princess Alexandra Hospital, Harlow.

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Butterfly Volunteers at PAH, Harlow: An Update

Since the beginning of 2018, the ART team, with Jo Corscaden at the helm, have been working with members of staff at Princess Alexandra Hospital, Harlow to create a team of ART Butterfly Volunteers who offer support to patients at the end of life, many of whom would otherwise be alone in their final days and hours.

Our team is now 40 strong – we have run two training days, one in January, and the most recent at the end of April. Both days were very well attended and we had some lovely comments and reviews of the experience from volunteers who came along:

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Surely that’s what Hospices do?

When I speak to people about the work we do at the Anne Robson Trust (or ART) often the response is – “don’t nurses do that?”

 

Until you have visited an elderly care ward in an NHS Hospital – its quite likely that you would think that when people are admitted to hospital the nursing staff will look after their every need, until they are better, and discharged home in a fresh nighty or PJ’s, with rosy cheeks.

Unfortunately, that is not the case. Each nurse will have at least 8 patients under her care. They will more often than not have complex needs and require a considerable amount of “nursing” time. In a recent article in the Guardian, of the 376,000 Health Care Assistants in the NHS in England, 74% are taking on extra tasks and performing roles usually undertaken by nurses, due a lack of nursing staff.

Ward staff across the country are fire fighting on the front lines every day – 7 days a week – 365 days a year.

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Diary of a Butterfly Volunteer by Tanya Cotter

28th April 2018

The first time I heard about the Anne Robson Trust was when I read an article posted by a local newspaper on Facebook. I was so moved by the content that I applied to become an ART Butterfly Volunteer seconds after reading it. Although I knew that the NHS was stretched and had limited resources, it really shocked me that there were people dying alone.

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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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25 Hours and Counting…

Wow. What can I say? What an amazing two weeks we’ve had since the Anne Robson Trust Butterfly Volunteers launched on Monday 15th January.

The team, lead by my wonderful colleague and Director of Care, Jo Corscaden, has already made a hugely positive impact at The Princess Alexandra Hospital in Harlow.

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Butterfly Volunteer Training Day – 9th Jan 2018

Today is an Exciting day today for the Anne Robson Trust – training Butterfly Volunteers to support end of life patients and their loved ones at The Princess Alexandra Hospital, Harlow.

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Launching the Anne Robson Trust

Launching the Anne Robson Trust – Butterfly Volunteers Project today Looking forward to training our 18 wonderful volunteers next week who will start visiting patients on 15th January! Great start to 2018!!

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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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