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Celebrating Excellence: End of Life Care

Anne Robson Trust won the End of Life Care Award in the Markel 3rd Sector Care Awards 2019. Liz Pryor, Director, tells us about the charity.

When we started out on our mission to provide support to people dying in hospital back in 2017, we wouldn’t have believed that within two years we would be on a stage at The Marriott Hotel in Grosvenor Square, accepting a national award from the fabulous Dame Esther Rantzen.

Our story

My mother, Anne Robson, sadly died after a week spent in hospital in isolation. She was admitted in mid-January 2010, with a suspected fractured hip (otherwise a relatively healthy 79 year old), spent six days in a side room with no visitors allowed (it was thought, unfortunately wrongly, that she had norovirus), and discharged back to her care home a week later, in the words of her GP, ‘a terminal, moribund patient’.

Mum died a matter of hours later. Only two of my four siblings were able to be with her.

That was the starting point – when the seeds of the charity were sown. In the years that followed, I spent time working with different charities in and around hospitals, learning about the complexities of the NHS, and the challenges of looking after elderly people – some with families, some not. Many of these patients have multiple health issues and a frightening amount of them have some form of dementia.

When I was asked to look at improving end of life provision for a hospital where I was working, I soon realised that a massive difference can be made by providing ‘more hands on deck’.

What we do

Butterfly Volunteers – which Anne Robson Trust was created to expand – are people who work alongside nursing staff on wards, providing company and companionship to patients who have been identified as being in the last days and hours of their life. Many of these patients have no other visitors at all. Nurses want to have the time to sit with their dying patients, to hold their hand and stroke their brow – but realistically they just can’t.

Since Autumn 2017, Anne Robson Trust has worked tirelessly to embed a team of Butterfly Volunteers at our pilot site, The Princess Alexandra Hospital in Harlow. It has an exceptional team of 30 Butterfly Volunteers who, since launching, have supported over 900 patients, and their loved ones, at this incredibly challenging time, providing an astounding 1,500 hours by the bedside.

The Princess Alexandra has recently become our Centre of Excellence for training Butterfly Volunteer Coordinators from other NHS Trusts, who go back to their Trusts after their training and begin setting up Butterfly Volunteer teams in hospitals in their area.

Butterfly Volunteers are specially-selected and are trained over and above the NHS Trust’s mandatory training (importantly, the Butterfly Volunteers work for the NHS Trust – they are not Anne Robson Trust volunteers). They are looked after by their dedicated Coordinator. We feel strongly that if the volunteers are properly looked after, made to feel part of a strong team, given exceptional training and one-to-one emotional support, they will provide excellent support to patients.

How does it work?

Our model is a simple one. We work in partnership with acute NHS Trusts to help them quickly set up and embed teams of specially-trained volunteers to provide support to patients at the end of life.

To do this, we put a considerable amount of emphasis on recruiting the right person to the Butterfly Volunteer Coordinator post. If you get this right, the whole project runs smoothly from the outset. Get it wrong, and it will be incredibly difficult to make it a success.

We spend time with newly-recruited Coordinators – they visit our Centre of Excellence to undergo their induction training – they see the team in action, shadow volunteers, speak to families and patients (where appropriate), and begin to intrinsically understand what they are expected to do. Coordinators are trained to undertake the administration and data collection, using our tried and tested systems and documents.

They are supported to recruit their own team of volunteers, managing the whole process, from information sessions through to interviews, setting up their first training day, and getting their team out on the wards.

The Coordinators attend quarterly meetings with others from their area – so they also receive peer support and team spirit. They share best practice and come up with new ideas to tackle challenges.

Looking to the future

In 2019, Anne Robson Trust partnered with three more hospital trusts: The Norfolk and Norwich University NHS Foundation Trust; East Suffolk and North Essex Foundation Trust (with teams at both their Ipswich and Colchester Hospital sites); and the James Paget University Hospital in Great Yarmouth.

From small beginnings at Princess Alexandra Hospital in 2018, with just 20 Butterfly Volunteers, we’ve expanded to start the new year in 2020 with 106. We are also excited to have five new trusts in line to set up teams of Butterfly Volunteers in 2020, with more waiting to join. Our aim is to have national coverage in the next few years.

In the future, we are keen to look at providing support to residents in care homes who are approaching the end of their lives. There is so much emphasis on hospice care, and so many people volunteer in those environments – but we would like to see a move to supporting dying people in more settings; as other services come under increasing pressure, more and more of us will be facing the end of our lives in care homes.

The Markel 3rd Sector Care Award for End of Life Care has given Anne Robson Trust a national profile – and the confidence to speak out and expect to be listened to. We are the only charity in the UK working to embed volunteers in hospitals to support patients at the end of life. We are proud of the work that we do, and keen to expand our team so that we can make an impact far and wide.

We’re grateful to the Markel 3rd Sector Care Awards and Care Management Matters for the support and recognition, and we are excited to see what 2020 brings.

It took lots of different twists and turns to get to where we are today – but we’ve done it, and I’m sure Mum would be proud of the charity we’ve created in her memory.

Liz Pryor is Director of Anne Robson Trust. Email: Twitter: @AnneRobsonTrust

The Markel 3rd Sector Care Awards is run specifically for the voluntary care and support sector. Visit to see 2019’s winners and find out more about this year’s event. Sponsorship opportunities are available.

With thanks to our supporters: National Care Forum, Learning Disability England, The Care Provider Alliance, Association of Mental Health Providers and VODG.

The End of Life Care Award was sponsored by Care Choices

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