At the Anne Robson Trust, we believe that no one deserves to die alone
Everyone should have the comfort and companionship of another human being as they die, and the support to prepare for the end of life.
We work to support people facing the end of life, whether their own or that of someone dear.
In 2010, Anne Robson, died following a series of traumatic events.
Her daughter, Liz Pryor, went on to work with a number of charities in and around the NHS, to try to address some of the challenges that had come to light during the last weeks of her mother’s life. Read Anne’s story.
Liz wanted to do something to help other families facing the death of a loved one, to try to ensure they didn’t experience what her family had gone through, and to remember her mother.
Through the Butterfly Volunteer teams, the Anne Robson Trust reaches so many people in their final days and hours of life – working in partnership with NHS Trusts.
It shows how such a simple idea – having someone to listen to you, comfort you or just sit with you – can give immeasurable dignity, compassion and support to patients, friends and family at a distressing time.
In 2016 Liz was working at the East & North Hertfordshire NHS Trust, and was tasked to set up the first team of Butterfly Volunteers, to work on wards alongside the NHS staff, spending time with end of life patients, especially those with no visitors or whose family members could only visit occasionally.
These first Butterfly Volunteers were so well received and their presence was so appreciated, by patients, families and the hospital staff, that Liz realised there was a bigger job to be done.
With the backing of the team at East & North Hertfordshire NHS Trust, Liz went on to set up this charity, in memory of her mother.
The Anne Robson Trust’s initial role was all about supporting hospitals to set up and run their own teams of Butterfly Volunteers.
Liz was joined by Jo Corscaden, who took on the role as the first Butterfly Volunteer Coordinator at The Princess Alexandra Hospital in Harlow. In setting up and running this maiden project, Liz and Jo immediately recognised the importance of supporting volunteer wellbeing. Jo now oversees this area of work as Wellbeing Manager for the charity.
Although the restrictions of Covid-19 mean that volunteers have been unable to work in hospitals, the aim of providing on-the-ward companionship remains important to the Anne Robson Trust. We hope to be able to work with more hospitals to set up teams of end of life volunteers once the pandemic is behind us.
Through the Anne Robson Trust’s work with the Butterfly Volunteers, we identified that end of life patients are not the only people who need help. There’s also a huge need for better support for those close to them – the family members and friends who are soon to be bereaved.
In particular, we often found we were hearing family members say how much they wished they’d talked about dying with their loved one before they became so ill. We know that having open and honest conversations about the end of life and what we wish to happen can help people prepare for death and feel fewer regrets after someone dies.
From this, we had the idea to create a suite of resources to help enable these difficult conversations – leading to our It’s Time to Talk podcasts and workshops.
Managing bereavement and end of life care remains a huge challenge for the NHS.
Without the help of the voluntary sector it would be impossible. The Anne Robson Trust is in the vanguard of this work, with their unique approach, training and understanding.
I’m full of admiration for what they achieve and so grateful that they do.
In 2020, the Covid-19 pandemic meant the end of volunteers in hospital for the time being. But the need for their work didn’t go away – if anything, it was greater than ever before, with more people facing deaths they were unprepared for.
What’s more, the Anne Robson Trust had trained over 100 dedicated, experienced end of life volunteers. We didn’t want their skills in empathy and compassion to go unused. Nor did we want the volunteers themselves to lose the benefits of feeling fulfilled and giving back to their communities.
The Anne Robson Trust Helpline, launched in Spring 2021, not only enables these volunteers to keep making use of their skills, it also enables us to reach a far wider audience, offering support by phone to people facing the end of life anywhere in the country, rather than just at our partner hospitals.
The setting up of Family Hubs in hospitals is the most recent goal of the Anne Robson Trust.
We’re currently working with several partner hospitals to plan, fund and set up these safe spaces for family members visiting end of life patients, run by Butterfly Volunteers.
Please follow our latest news to see how these plans progress.