“If we had any worries, day or night, we could just ring the telephone support number”
Our St John’s Palliative Care Hub works with local care providers, GPs, district nurses, Specialist Nurses, the ambulance service, and other health and social care professionals in Bedfordshire to coordinate and provide the best possible end of life care. Michelle Jones shares her family’s experience of this service and, later, the transition to Sue Ryder St John’s Hospice.
I’m very close to my mum; she’s my best friend.
When Mum had her last consultant's appointment, she was told that her cancer had come back. We then were taken to another room and saw a palliative nurse who explained about the Bedfordshire Palliative Care Hub. She explained that Mum had been registered and that, if we had any worries, day or night, we could just ring the telephone support number. Then and there, we all put the number on our phones. We are big close-knit family, and everyone had the number.
At that time Mum was quite well, but over the next couple of weeks she started to go downhill. So I phoned the support number a couple of times and got straight through, and they got hold of the district nurses who had originally come to our house.
My dad also rang the Palliative Care Hub when he was panicking about Mum’s symptoms, and they really helped. Mum even called herself a few times. We are a big, close-knit family and having the number has helped all of us.
“With the Hub, I felt like I wasn’t on my own”
The Palliative Care Hub has worked really well in terms of coordinating between the different services.
The Palliative Care Hub also arranged the prescriptions with my local pharmacy and called me to let me know once they were ready to pick up. They passed on messages to the nurses and, when I needed it, they sent the nurses to the house within an hour.
Sometimes it's scary if someone is really unwell because trying to get hold of their GP is virtually impossible. With the Hub, I felt like I wasn’t on my own.
From the Hub to the hospice
Moving Mum to St John’s Hospice was such a relief. Everyone has been amazing. When we were in hospital we felt that was no place for terminally ill people; it seemed like nobody had enough time as so many people were coming and going.
My mum is comfortable and happy, and I just think it's great. There should be more places like this.
I’ve got a five year old and I was really nervous about whether I should bring him to the hospice because when I was a child I was quite shielded from death. But I don’t think it’s been scary for him. It's just lovely here.
He has been very involved with my mum from the beginning. When Mum lost her hair, he used to put her wigs on and when we first came to the hospice, the nurses did a family tree with us, which was lovely. They also gave Mum a little teddy, Charlie Chimp, to give to my son; it is a special thing that hopefully he will remember.
Some days my son comes in and complains: “Oh, you're crying again, Mum,” but other days he cries with me.
As a family, we had never been in a hospice before, so we didn’t know how it would be; now I'm just so glad that we're here and not at home – because Mum didn't want to be at home. That was her decision.
Learn more about St John's Palliative Care Hub
Daughter of patient
Michelle's Mum, who has cancer, was supported first by our Palliative Care Hub in Bedfordshire, before being moved to St John's Hospice.