Brian Andrews, Chair of the Lay Representatives Board of the Pan London End of Life Alliance experienced at firsthand what can happen when palliative care doesn’t quite get it right. In his heartbreaking story, Brian describes the trauma of losing his wife amidst a chaotic and ineffective system. By Rachel McClelland.
Twenty-First -Century palliative care should, I’m sure we all agree, focus primarily on the patient. Unfortunately all too often, budgetary constraints, bureaucracy and conflicting strategies inhibit the application of care, leading to tragic situations escalating further. The NHS has, in recent years, been working with a number of key organisations as part of their remit to improve palliative care. Their involvement in projects like the Pan London End of Life Alliance has begun to address issues and encourage people to talk about their needs and wishes.
Brian Andrews, Chair of the Lay Representatives Board of the Pan London End of Life Alliance experienced at firsthand what can happen when palliative care doesn’t quite get it right. In his heartbreaking story, Brian describes the trauma of losing his wife amidst a chaotic and ineffective system.
“In 2009, my wife had a lumpectomy and the start of treatment for breast cancer. She had a torrid time with chemotherapy and radiotherapy but after 13 months was given the all clear and told she didn’t have to return to the hospital for a year. We celebrated by taking my grandsons on holiday and it was just as well because within three months my wife was dead.”
Brian’s wife, Gill, had developed a rare form of leukaemia as a side effect of the chemotherapy. She was given eight weeks to live. The cancer was so aggressive that she died just 26 days later.
When the news was delivered, Brian was in complete denial, ‘like a rabbit in the headlights’ and that was the start of a challenging and devastating journey.
Gill had expressed her wish to die at home, a seemingly simple last request, however, it took seven days for them to ‘escape’, as Brian terms it, from the hospital system. Despite not needing or wanting financial assistance, somebody had applied on their behalf and that cost Gill and Brian seven days of their final 26 together.
Much to Brian and the family’s relief, Gill was finally able to return home; “Gill’s arriving home was a turning point. The contrast between the NHS and palliative care was huge. The nurses were fantastic. After five days I sacked the domestic care; who we’d ironically got as a result of the funding. The head carer was more interested in her timesheets than anything else and when another carer arrived, she told us that Gillian wasn’t going to die because we were all going to pray together and sweet Jesus was going to save her. I’m a man of faith but….”
Six days before Gill died, the couple received a visit from the head of nursing at St Christopher’s. They were told that because of Gill’s condition there was a strong possibility that she could die at any moment from a massive haemorrage. Brian asked what he should do if he were to be alone when that happens. The nurse replied, ‘cuddle her, tell her you love her’, it would only take a couple of minutes. She advised him to have dark towels, ideally red or brown, to mitigate the visible image of what might happen in that event. Whilst shocking, the emotional support and the practical advice was exactly what Brian needed and it made a huge difference.
“We experienced seamless continuity except on one occasion; six days before Gill died, she was in so much pain in the middle of the night. As a last resort I called the emergency doctor. A couple of hours later the emergency doctor arrived. There was an initial problem because his English wasn’t perfect but more importantly he didn’t have a clue about Gill’s condition. He didn’t want to give her medication, he wanted to send her back to hospital! We had ‘do not resuscitate’ notices all over the flat and she was in significant pain and he refused to give her any medication – I had to physically stop him from leaving the flat until he did so. I’m not proud of that but I was desperate.”
Although Gill finally made it home, largely due to Brian’s persistence, there were significant flaws at every stage of the journey. Brian recognizes that there are many dedicated and professional carers and nursing teams across the UK and that the problems arise from an ineffective system and bureaucracy. He believes that what is needed is a ‘One Stop Shop’, one dedicated individual who can access a patient’s total case history as well as one telephone number, rather than the thirteen that he had, that family members can use for immediate assistance and support.
Although still traumatised by his experience and the untimely loss of his wife, Brian has channeled his grief and tirelessly campaigns to raise awareness in bid to change the system to ensure that people’s dying wishes are granted and that their families don’t suffer unnecessarily.