Exhibition at Senedd highlights living with dying

A filmmaker has joined with end of life charities Marie Curie and Hospice UK to produce a thought-provoking exhibition highlighting living with dying.

Ceridwen Hughes, whose organisation Same but Different uses the arts for positive social change, was driven by her family's experience to explore "What Matters Most?" when people have a terminal illness, the difficulties people face to get support and what a difference good end of life care can make. She is now launching an exhibition about living with dying in the Senedd (Welsh Parliament).

Through raw and honest interviews – including with her own sister, as well as people who have been given a terminal diagnosis, their loved ones and care givers – Ceridwen has created a thought-provoking film and atmospheric exhibition with the intention to encourage discussion around dying, a subject that is often avoided until it is too late.
In collaboration with Hospice UK and Marie Curie and with support from the National Lottery Community Fund, Ceridwen and the team at Same but Different were able to talk to others with a terminal diagnosis and their relatives to understand what a difference it can make if the right support is available.

Speaking of her experience, Ceridwen said: "You expect your parents to die but expect there will be care there, there will be help when you need it, but unfortunately in our situation that wasn't the case. From being told there was nothing that could be done to dying it was only three weeks.

"We thought that my sisters, one of whom is a nurse, would be able to care for mum and that we would have time to sit and reminisce with her and make that time meaningful, but it was far from the reality. I visited daily and you could see that from the beginning it was a struggle.

"Mum very quickly lost her ability to walk, because she was in so much pain, and as there was no information on where you could access things as simple as equipment, she even had to do her toileting in a vegetable scraps box for a couple of days as we had to try and find where to get a commode. Her pain was through the roof and yet once she had signed a Do Not Resuscitate form we did not see a GP again. This all took place during Covid and so whilst I understand these were unprecedented times, we strongly believe a lot of what went wrong around mum's care would have been the case even if it had been now."

Alison Barkley, Ceridwen's sister added: "She loved her house and wanted to be in it. Her last two weeks were horrific, from the pain, no-one was listening. We made 43 phone calls in 2 days [to try to get effective pain medication]. It was too little too late... when the palliative care team finally came...and she slipped into a coma. I was unable to talk to her, I was too busy on the phone, that will always be a regret for me..."
Ceridwen and her family's experience highlight the difficulty of accessing support where and when you need it. It made Ceridwen realise there could be people unable to access help.

Angela Owen, a nurse from Marie Curie said: "I don't like the thought of anyone dying on their own or that a patient is stressed at the end. Having someone there holding their hand is priceless."

Across the UK, as many as 600,000 people die with some need for palliative care each year, and this number will only increase as our population ages. In Wales, the figure is 32,000.

This film and exhibition illustrate how the right care can provide individuals and their families the ability to navigate this difficult part of everyone's life in a way that is fitting to them.

The film and exhibition is available on www.samebutdifferentcic.org.uk/whatmattersmost

The What Matters Most exhibition will run in the Senedd Oriel from 12 January – 15 February 2024, Sponsored by Mark Isherwood MS.

The following people are featured in the exhibition. Some of those mentioned have since died.

Phillip Banfield's mum Shirley Gale initially wanted to stay at home when she was deteriorating rapidly from bowel cancer, though realised this would be difficult, as she would need night-time care.

"The options about how to get care very quickly, in the acute phase, if you need care tonight or tomorrow, that's really difficult to do," said Phillip.

Consequently, Shirley chose to go into a hospice, as she knew her elderly partner couldn't cope. The availability of appropriate and such compassionate care once in the hospice made all the difference to their story.

Shirley was determined not to feel sorry for herself; her death was part of life.
Phillip added: "She isn't eating, but isn't in pain and is quite philosophical. There is no difficulty of life getting in the way; we are having conversations with each other that I have been waiting 50 years to have. She's being openly affectionate and it's like having the mum back I remember as a small child. It is almost as if she has just discovered the point of life just when life is at an end. It's been a really beautiful time."

Hattie and her husband John lived on a smallholding in Powys. He had lived with prostate and bladder cancer for 10 years. She believes there is a huge need for education to be in place for people who are supporting and caring for dying relatives and friends. The knowledge would have helped both her and John during his end of life.

"Some preparation would have been nice, John kept asking the palliative team 'How do I get from here to death?' I didn't know John would lose all his mobility. It was physically very demanding; it would have been useful to know things like that or how it could have been. As fantastic as the palliative community care team were, they came in a bit late," explained Hattie.

Dimitar Kashchiev and Megan McClay, from Norwich, who had only just had a year together when Megan received a terminal diagnosis from metastasised ocular cancer, expressed the need for calm and peace in their precious time together. Megan started end-of-life planning and found having clarity on this enabled her to focus on the quality of her remaining life. "You should define what quality is for you...spend the time how you want to."

Dimitar explained "I now look at what's most important with my time and her time. Instead of always doing what I thought was the helpful thing and taking action. I take time and celebrate every moment as much as possible. I am aware however that there will come a point in the future that Megan won't be with me. It's still difficult for me to talk about. I'm not anywhere near a stage of acceptance about the future but I'm getting better at thinking about it a little bit. Sometimes when I do think about a future without Megan it feels like I'm betraying us."