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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!

Launching Butterfly Volunteers at The Princess Alexandra Hospital in Harlow was fantastic – the management team there could not have been more supportive, in fact Professor Nancy Fontaine, the then Chief Nurse at PAH, has since become our Patron, and Shahid Sardar, AD for Patient Experience is our first ART Ambassador! Both are trained Butterfly Volunteers.


We have trained over 40 ‘end of life’ volunteers who have made quite an impact already. In their first year they supported 462 patients who were facing their last days of life, visiting them over 1300 times, and spending 700 hours by the bedside, and supporting their relatives, as they faced the imminent death of their loved one. The team now have a Butterfly Volunteer Coordinator at the helm. Nicki Harris joined PAH in January 2019, having worked for The Red Cross for 12 years, pictured here with Jo.


Receiving charitable status in May last year was quite a milestone… (anyone wondering about whether to go down this road – call me first!). In fact its been a huge learning curve – and I now wear lots of hats….



Website editing



Social Media….. to name but a few! Anyone who tells you that you can’t learn new stuff after you’re 50 is just downright wrong! (although it may well take a little longer than it once did!)

Special thanks must go to Jo – she has worked tirelessly setting up the scheme at PAH, being bossed around by me, and doing a fabulous job supporting the Butterfly Volunteers there. Not to mention keeping me company driving all over the countryside visiting new Trusts and Hospices….


So – one year on we now have a wonderful Management Team of 6 people, 4 Trustees and 4 Patrons (hopefully soon expanding to 6). They are all wonderful people helping us to achieve our aims and ambitions, and we are hugely grateful to them all.



New Hospital projects are happening too – Norfolk & Norwich NHS Trust are our new partner organisation, and together we have successfully recruited a Butterfly Volunteer Coordinator to run the scheme. With over 1100 acute adult beds, setting up the team here will be a challenge – but one that we can’t wait to get started on.


Two further partner organisations are working hard to secure funding for Butterfly Volunteer Coordinators, and we will update our website as soon as these agreements are in place. 8 more NHS Trusts have been in touch, so we are hoping that the next few years will be busy ones.


Raising funds continues to be a hard slog – with over 170,000 charities in England and Wales, competition is fierce. Large national charities tend to receive the lions share of funding – last year 78% of individual donations benefited only 3% of charities. However, we have been humbled by the response from individuals, in memory donations, and grant making trusts and foundations.


Our work is not only expanding to new hospital partners. Our new enterprise is running workshops – called The “D” Word. These workshops run for 3 hours, and the main topic is why we all find it so hard to say the words ‘death’ and ‘dying’. The sessions are suitable for anyone from clinicians to the general public, although they can be adjusted to suit the audience! Click here for more info, or to book a session.

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Anne Robson Trust

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