Liz Pryor was shocked and disappointed at the level of care her mother received when she was dying. Her experience made her determined to improve the care of terminally ill people, both in hospital and at home and inspired her to set up the Anne Robson Trust in her mother’s name.
IN 2010 LIZ Pryor’s mother was admitted to the hospital. When the hospital discharged her they didn’t make the family aware of the fact that she was dying. It was only after Anne Robson died that her family found out the ambulance drivers who took her home thought that she was being sent home to die.
Director of Anne Robson Trust, Liz Pryor said: “It’s what makes me so passionate about what I do because that should have never happen to anybody ever. Unfortunately, I think it probably does happen to people quite a lot.”
After her mother’s death, Liz teamed up with her local hospital, where she worked for the director of nursing, and was asked to look into care for patients at the end of their life. The only obstacle was the money, as she had no budget and had to ask people in her local community to become volunteers. Liz said that they were amazed by the sort of people who came forward to help as what they were asking them to do was to sit with dying strangers.
In 2017, after leaving her local hospital, Liz started setting up the charity and got charitable status at the beginning of 2018. The trust initiated a pilot scheme when it was approached by Princess Alexandra Hospital, Harlow, and asked to set up a team of volunteers. This is going to be extended this year to: Norfolk and Norwich, East Suffolk, North Essex Foundation Trust and the James Paget Hospital, Great Yarmouth.
Anne Robson Trust is a charity which partners with NHS Trusts to help them set up teams of volunteers who spend time talking to patients in hospitals who are on their last days and hours of life; they also provide support for their loved ones. The charity also runs workshops that help people understand why it’s important to talk about death and dying. During the workshops they talk about what is going to happen so that people are not frightened of dying; so that they don’t ignore the symptoms that they might have to deal with in the future and to make sure that they live their life to the best instead of being terrified for their last 10 or 20 years about what might happen to them.
Liz Pryor says: “It’s really important to understand the normal, natural stages of dying and to understand that it’s important to think about what you want before you’re staring death in the face, and to understand why it’s important to plan things.”
The reason for the workshops is because the hospital volunteers that work in partnership with the trust often come back and say that patients they have supported did not feel they could talk to each other. The families and the patients are scared to talk to one another because they don’t want to upset each other and because death is a taboo subject to many people. The workshops are suitable for anybody, including health professionals, member of the public and families of terminally ill patients.
Shannon Everett, 18 who lost her grandparents when she was younger said that a charity like Anne Robson Trust would have helped her, her family and her grandparents come to terms with death during such a difficult time. She believes that it would have been a great support to have had someone who was not family that they could have spoken to during the time of their grandparents passing as they would have had someone who could listen to them and help them deal with it in a more positive way.
Shannon said: “It’s nice knowing that there are charities and people out there who are willing to help with this difficult period in life and that their only intention is to help with coming to terms with what is going to happen and dealing with grief.”
She believes that her grandparents would have wished to spend their last moments with their family rather than a volunteer as they were very much family orientated. However, she thinks that for many people volunteers “would be comforting, especially as some elderly people can be lonely and it would be nice for them to have someone to talk to just before they pass.”
This kind of service, provided by volunteers and carers, is crucial as they are often the last line of support an elderly person and their family get.
Donna Barker who has worked as a carer for nearly three years said that she used to visit a man and his wife for nearly a year. The man had dementia and she was there to give his wife a break for an hour in order to rest or go shopping. However, she ended up waiting for Donna’s visits every week and talk to her for the whole time. When the man died earlier this year Donna was devastated but she knew that he had a great life.
Donna said: “You have to keep telling yourself that it’s the circle of life. I try hard to switch off once I get home but it’s not always easy.
“Whilst training I was told not to get emotionally involved. However, sometimes the things that you are told by our service users make it hard not to get involved.”
Donna hasn’t heard of Anne Robson Trust but she believes that many of the families she visits would benefit from them.
The Anne Robson Trust received major recognition this week when Liz was presented with the Prime Minister’s Point of Light award for outstanding volunteering.