“The plan is to stay at home with me for long as we can. I know I have St Christopher’s there if we need them.”
Valerie Daly
Three and a half years after her son Tim was referred to St Christopher’s, Valerie Daly feels fully vindicated in the decision to opt for palliative care and can’t imagine what life would be like without St Christopher’s.
Valerie, 82, has cared for Tim, 47, who has learning disabilities, all his life. Her total trust and confidence in St Christopher’s aren’t derived from long stays or frequent visits to the Sydenham site. Rather, they flow from a total belief in the expertise and understanding of the nurses and a very real sense that, even if she and Tim don’t access their help all the time, it’s there when they do need it.
“We have such good feelings about St Christopher’s even though we haven’t been there much, apart from for some music therapy a few years ago. We know it is there any time and when you know you have support there when you need it, it enables you to carry on. I don’t value them by how many times I contact them, but by being there and being so good,” says Valerie.
Tim with Phoebe (left) and her nursing colleague Harriet
“The other thing that really matters is the consistency and efficiency. I know if I contact them, I don’t have to introduce myself or explain about Tim and that their notes will be completely up to date, right up to what happened five minutes ago. I can’t tell you how valuable that is.”
Specialist support from St Christopher’s Learning Disability nurse specialist
A big factor in Valerie and Tim’s sense of wellbeing and ease with the care and support they receive from St Christopher’s comes from the expert care provided by Phoebe Mooney, a Clinical Nurse Specialist who works predominantly with people with Learning Disabilities. Since Phoebe’s first visit to see Tim and Valerie in August 2023, patient, carer and nurse have developed a very strong bond, Valerie says.
Phoebe (left) and her nursing colleague Lauren
“I just totally trust her on everything.”
“The nurses we had before were amazing,” says Valerie, adding: “But with Phoebe being a learning disability nurse it means I didn’t have to explain anything. She understands why he won’t open his eyes for several minutes for example and is happy to use a stethoscope to check his breathing every visit because Tim thinks that’s what nurses should do. And after all these years of explaining, it’s great having someone who just gets it.
“He’s always loved talking to people, but Phoebe and Tim are so close. I just totally trust her on everything and from my point of view I think she understands what it’s like being the parent of someone with a learning disability and that’s very important to me.
“I just can’t imagine her not being there really because I trust her completely.”
For Valerie’s part, she understands Phoebe’s perspective too, having trained as a nurse herself at Guy’s Hospital back in the 1960s and then worked in Australia and Papua New Guinea. That foundation has stood her in good stead, especially recently as Tim’s cancer has progressed and he’s needed dressings changed on a regular basis.
Tim’s two brothers and their three children live nearby, and Tim enjoys their frequent visits. That’s one of the factors in Valerie’s wish for Tim to keep living in their house.
“The plan is to stay at home with me for long as we can. He has everything he wants here, his TV, i-pad and computer and lots of people come and visit him. I just want for him to be happy and not distressed. I know I have St Christopher’s there if we need them.”
Tim at home, in late 2023
Tim died at home on 13 November 2024.
“He lived three years longer than estimated by the hospital,” says Valerie, adding: “Three years he enjoyed.”
Tim and Valerie were featured in a piece from Sky News earlier this year. You can read all about that, and watch it, by clicking here.
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