Mum's plea for improvements in end-of-life care for loved ones
The mother of a woman who discovered she had terminal breast cancer after her GP forgot to send an urgent referral to hospital has called for improvements in how medical teams "connect" with seriously-ill patients.
Belinda English went to her GP in 2008 after discovering a lump.
Her doctor told her she would be referred to hospital but after three weeks was still waiting for an appointment. It was discovered the referral had not been sent.
Worried about the delay, her mother Dori-Anne Finlay paid for a private consultant, but they were told the devastating news Belinda had stage three breast cancer.
Belinda, from Holywood, Co Down, battled for just over four years, undergoing a double mastectomy and drug treatment.
The veterinary nurse was cared for by her mum and sister Chrisanne until she passed away in January 2013 aged 28.
Her mother's experience during her daughter's final days has led to her saying improvements could be made in palliative care across the system, which she found "disjointed".
"At first, yes, we were angry about the mix-up with the referral letter as we could see the lump getting bigger," she said. "But, with hindsight, the cancer was just so aggressive."
The 66-year-old was speaking out after being involved in a major consultation led by Marie Curie. Involving 1,400 people, it identified the best ways of providing palliative care outside of working hours to avoid crises and help patients to stay in their place of choice.
As she cared for her daughter she felt there was a "big gap" between GP and hospital services and sharing information.
"Belinda expressed her wish to be at home when she died, so when she was told that her treatment was finished and they had done all that they could, she was discharged from hospital.
"But when they broke the news we were left thinking: what is the next step? The care she received after her discharge home was lacking. No one had explained to us about the care she would get at home or how we might deal with the difficulty she was having with breathing and eating. It felt disjointed to me."
Dori-Anne explained there were also times she felt Belinda wasn't being listened to.
"Towards the end of her life, Belinda was being triaged and three different areas of care staff got involved. She became very distressed at her loss of control over the care she was getting.
"At one point, I had to step in and advise the care professional who was 'ticking the boxes' that it was not an appropriate time to talk to my daughter as she was having breathing difficulties.
"I would certainly like to see more professionals, from consultants to nursing staff, listen to patients and their carers more, so that there's more of a partnership and connection between them."
But Dori-Anne said it was comforting that her daughter passed away in her home.
She added: "There were a few things that didn't go so well, but in the end, my daughter got her wish of dying at home with those that matter to her.
"She died in her sleep peacefully, with her sister, cat and dog by her side. It was just the way she had wanted it.
"Although I wasn't next to her, it was comforting for me to know that she had her last wish."
Marie Curie published a new report with results from its 18-month consultation project involving more than 1,400 people including current and former carers, and health and social care professionals. The report, Palliative And End Of Life Care Priority Setting Partnership highlights areas in need of funding including better out-of-hours care, access to services and support for carers.