Relative

I wanted to say thank you so much to The Anne Robson Trust. I just love your visiting cards. I am an only child, and my Dad was an only child, so there were not many of us around to support him when he was in hospital. To come in every day and read that Butterfly Volunteers had been sitting with him, what their names are, and how long they spent with him, meant the world to me. I can’t thank the volunteers enough for the support they gave our family. It will be a privilege to support a much needed charity in future.

Chief Nurse at PAH

Being a Butterfly Volunteer gives my role as Chief Nurse greater meaning purpose and resolve. The Anne Robson Trust provides a core service to compliment an already over-stretched NHS. End of life patients and their families need time, which Butterfly Volunteers have.

Prof. Nancy Fontaine

Butterfly Volunteer, The Princess Alexandra Hospital NHS Trust

Ward Manager, PAH

We have had ART Butterfly Volunteers working with us on Gibberd Ward at The Princess Alexandra Hospital for over 6 months now. The ward is made up of 6 side rooms which are available to patients at the end of life, and 4 bays specifically for patients with dementia. The support the team of volunteers give is fantastic and has really put the minds of relatives at rest, as well as being a huge comfort to patients.

We had an occasion recently where a volunteer was with a patient when she died. The lady had not had regular visits from her family as they lived some distance away and are elderly themselves. When the lady died the family were worried that she’d been alone. When I explained that an ART Butterfly Volunteer had been there with her, this was a huge comfort to the family.

The staff on Gibberd Ward look after lots of patients who are nearing the end of life and they would like to spend more time with each patient – sadly this isn’t always possible, so having the ART Butterfly Volunteers here has been a great support to the staff as well as the patients and relatives.

Michelle Ashman

Ward Manager, Gibberd Ward
The Princess Alexandra Hospital NHS Trust

Butterfly Volunteer

Caring for the dying person is one of the most precious gifts one can give, dying is a natural part of life and no one should die alone. In my role as a Butterfly Volunteer I feel I am helping people when they need it most – at the end of their life. It is an honour to be able to do this.

Evelyn Peacock

Butterfly Volunteer, The Princess Alexandra Hospital NHS Trust

Family Comment

It was so wonderful to have a chat with the Butterfly Volunteer. We had been sitting by Dad’s bed for hours, and she was so kind. A fantastic, much needed service.
Thank you.

Mrs S, Harlow

ART Butterfly Volunteer

When I tell people what I do, everyone says; “I don’t know how you can do that, isn’t it so sad?”. Of course it is sad, but it’s not my grief. Yes I get upset sometimes but I am there to support the patients and their families. If I can make someone smile, help a family member to be comfortable around their loved one in their last hours, or just bring the gift of time, company and sometimes tea, easing at least the time that I am there, then I have done my job.

Carrie, PAH Harlow

Butterfly Volunteer

ART Butterfly Volunteer

I enjoy my role as an ART Butterfly Volunteer because it has enabled me to give something back to this wonderful hospital I work in, in the form of comfort and compassion – not only to patients but also to their families. No-one should have to die alone and to be with some in their final hours of life, who would otherwise have been alone, for me is an absolute privilege.

Lynne Mariott, Harlow

Butterfly Volunteer

Family Comment

I was so touched by how gently the Butterfly Volunteer spoke to my wife, I was very tired and appreciated some time out, knowing she was being looked after.

Mr L, Harlow

Working with Liz Pryor

Liz is a force of nature; and fortunately for us all, a passionate advocate for improving end of life care. I’ve no doubt she will always find ways to change the world, in whichever environment or structure she operates. The strength of her commitment to improving end of life care comes through in everything she does and it is that energetic focus which makes it a joy to work with Liz. She finds ways of doing things that only a deeply committed person, with real courage and integrity would find; charming, persuasive, germane and direct, she brings the skills of a natural influencer to her mission, to bring a human touch to those who might, without her efforts, die alone.

Shahid Sardar

AD Patient Engagement & Experience

The Princess Alexandra Hospital NHS Trust

Butterfly Volunteer Training

I attended this day not completely sure about what it all entailed. It was well run, informative and a pleasure to spend the day with like-minded people. I came away feeling prepared and ready to start this very worthwhile role – its such a privilege to be involved.

Thank you, Liz and Jo.

Ruth McCrea

Butterfly Volunteer

Hospital Lead Chaplain

Partnering with the Anne Robson Trust (ART) at Princess Alexandra Hospital NHS Trust has been good news to our patients and their families as they now have a strong team of Butterfly Volunteers on site to provide caring support. Here at PAH, we have a team approach to end of life care. The Chaplaincy department and ART are part of the EOL MDT working together to enable patients to ‘live until they die.’  For us, “Care of the dying is an urgent care; we have one chance to get it right, and it is important that we leave best possible memories”. This is what I believe both the Butterfly Volunteer Team and Chaplaincy try to achieve with our dying patients and their loved ones.

There is an understanding of our different but complimentary roles. The care which the Butterfly Volunteers give to patients at the end of their lives compliments some of the care given by the Chaplaincy department. It is all about giving our dying patients and their family the care that they need at a challenging time.

Revd Christian Okeke

The Princess Alexandra Hospital, Harlow

Patient’s Friend

What a wonderful service – thank you Butterfly Volunteers at PAH. You do a fantastic job!

Reflections following the Butterfly Volunteers Training Day – 9th January 2018

The room was full of passionate people who want to improve end of life experience for the dying & their families & friends. People with compassion that realise there’s more to death than medicine. People who understand that gently being in the same space, small gestures and companionship can make a difference. People who know it’s a privilege to offer this important work. People who want you to remember feeling supported at a difficult time……rather than not being able to forget the difficulties.

Jennifer Sterlini

Butterfly Volunteer

Lead for Patient Experience at PAH

Being a Butterfly Volunteer gives me a sense that there is real dignity, grace and beauty to be found even at the end of life and I am proud to be part of an organisation that makes this possible. Thank you Anne Robson Trust.

Shahid Sardar

Butterfly Volunteer, The Princess Alexandra Hospital NHS Trust

NHS Staff Comment

“When we brought patients and staff together to discuss how we would like to develop end of life care at The Princess Alexandra Hospital NHS Trust, they were in agreement that having volunteers who could support dying patients and their families alongside our clinical staff would be on their “wish list”. We are delighted that we are able to fulfil this wish, as the Trust is now working with the Anne Robson Trust to train and support Butterfly volunteers for PAH.”

Julie Rodgers & Gill Robertson

Lead Clinicians for Palliative Care, The Princess Alexandra Hospital NHS Trust

Butterfly Volunteer Training

The time we spend with families can be so important. Talking with them about what is happening and going to happen can help to ease their fear. I cannot take away their pain or change the inevitable, but by providing some understanding and support I can make a difference to the way that they feel about this huge life event.

Butterfly Volunteer, PAH Harlow

Butterfly Volunteer Training

I was looking forward to the training day and it far exceeded my expectations. The evoke cards at the beginning was a real icebreaker and all the speakers were so enthusiastic. I met some new people on the day, which was nice, and it is great that we will get so much support. I can’t wait to get started.

Frances Donovan

Butterfly Volunteer

Butterfly Volunteer Training

I found the Butterfly Volunteers training day so useful, interesting and really well organised.

I didn’t know what to expect really, however a whole day seemed quite a long time for the training and wondered how the day would be filled. It was really interesting throughout and the day flew by. It was really good to meet all the other volunteers too and put a face to some names . It was also great to understand what inspired you to start the scheme Liz and although it was a terribly sad experience for you, it was also very inspiring that something so positive has come out if it that will make such a difference to other families and patients.

It was good to have an understanding of some of the challenges that may be faced and how to deal with some difficult questions that may be asked, I feel much more prepared having attended the training. Even some of the points mentioned that in hindsight seem obvious, unless they had been mentioned yesterday I am not sure I would have necessarily thought of them, ( ie soft shoes, will now remember to bring a change as my work ones are high heels) . I found the Chaplains presentation really good too, particularly his approach, in saying “I have noticed and I wondered…..which is a very simple and subtle to way to find out whether someone may want to support with chaplaincy etc.

Thanks to all and look forward to starting this role.

Jane Bryan

Butterfly Volunteer

Family Comment

Butterfly Volunteers is a super idea – such a help to have their help and support. And very knowledgeable too.

Ms P, Harlow