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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…




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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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ART Are Recruiting!!

An exciting opportunity has arisen to work with a small, but rapidly growing charity working in the healthcare sector.


The Anne Robson Trust has been set up to address the fact that hundreds of people are dying in hospitals with no one to support them, or sit with them in their final days. ART works in partnership with NHS Trusts to help them set up teams of Butterfly Volunteers. These volunteers provide countless hours of support to dying patients, and to their families.

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