Palliative and community nurses - the right end of life support for patients and carers
As the citywide provider of universal NHS care, Birmingham Community Healthcare is the only clinical service provider in the city that may care for a single citizen at different stages throughout their entire life – from health visitors as new-borns and routine immunisations as schoolchildren, to flexible, integrated teams of nurses and therapists as adults.
As part of that “cradle to grave” commitment, district nurses throughout our 31 teams have experience in providing care for people at the end of their life, supported by a dedicated team of four clinical practitioners in palliative care.
To support someone approaching the end of their life and their famili
es or carers, the palliative care clinical practitioners may work in collaboration with local district nursing teams, hospices and adult community services colleagues who provide care for people with long-term conditions, such as the specialist respiratory, cardiac, neuromuscular and Parkinson's teams.
As part of our series of articles for Dying Matters Awareness Week, one Birmingham woman has paid tribute to community and palliative care nurses for the practical and emotional support they offered during the final days of her sister’s life. And she hopes her story can help other families as they make the same journey.
Less than a year after being diagnosed with cancer, Jan Worthington died in November last year, a few days short of her 69th birthday, in the home she shared for nearly 40 years with her sister Karen – a much-loved mum-of-one and grandmother of three, who spent more than three decades working as a cleaner at Aston University.
Karen – known to most as “Kaz” - says that the distress of knowing her sister was in the final weeks of her life was significantly eased by the blend of compassion, empathy and professional expertise displayed by our palliative care nurses, working closely with the Trinity district nursing team, which covers the Aston area.
“It was January 2024 when Jan told me she had noticed her right breast was very hard and red in colour,” said Kaz (pictured at home in a garden with features she created in Jan's memory).
“She told me she hadn’t had it long and I knew that, normally, if there was anything wrong, she’d tell me - so I thought she’s either hidden it from me well or it’s come out of nowhere.
“She was referred to a clinic at City Hospital with suspected breast cancer but, being the sort of character she was, she told me not to worry because, when our mum had had breast cancer, they’d cured it with a mastectomy.
“But they found it was the whole breast. She had all the scans and tests but it was too advanced to be curable. We knew we had to come to terms with the fact that she wasn’t going to live very much longer.”
As Jan’s carer, Kaz tried everything to get support for both their needs. Several weeks passed in which Kaz says she felt very alone.
“We went back and forth to the hospital and a consultant said he’d put us in touch with cancer charities,” says the 57-year-old.
“But it didn’t go anywhere. I felt as if, because nothing could be done to cure Jan, a door had closed. I felt abandoned, to be honest. I was distraught but I had to keep a smile on my face for Jan. I saved my tears for after she had gone to bed.
“Finally, I took the bull by the horns and went to our GP. One of them came to visit Jan at home and was with her for about an hour and a half.
“We had some very difficult conversations that day but it was well worth it because we were able to complete a ‘respect’ form, declaring that Jan didn’t want to go into a hospice or hospital - she wanted to die in her own home. And regular visits from the district nurses started – twice a week at first and, later, four times a week.
“Before then, everything had been a battle, but they were brilliant. They sorted a bed downstairs, all the kit – a perching chair, walking frame, bath lift. I never had to plead for anything – those nurses were absolutely wonderful. Never once in a bad mood, always a friendly chat; and here for me, as well as Jan.
"I tip my hat to each and every one of them for the way they took care of Jan - and myself as well."
“I cannot fault the palliative and district nurses who came and walked alongside us on our journey. I will forever be grateful. She was the most beautiful, inoffensive person. She never had a bad word for anyone and didn’t like causing fuss or worry.”
Kaz describes one particular day, in August, when the compassion and experience of the team shone more brightly than ever. On this occasion, it was palliative care clinical practitioner Sylvia Ferron who attended the house.
“Jan was completely unresponsive – in the end for all of 21 hours,” remembers Kaz. “I called the nurses, thinking we were losing her, and Sylvia said she was on her way. She came in, calmly, and just talked gently to her - Jan had taken a big shine to her! She said, “trust me, she can hear us” and was saying, quietly, “Janet, come on darling”. And, a little later, after Sylvia had left, Jan sat up and asked for a drink. We thought we’d lost her, but she came back to us.
“On that day, it really hit home what these nurses could do – the empathy, the reassurance; but also the practical and the realistic – Sylvia said I really need to prepare you because she’s not going to get better.”
Kaz said that Sylvia arranged for a ‘comfort care’ package to be delivered in a visit from two “lovely” nurses from Birmingham Hospice. And she was able to get some much needed rest after the team made contact with Marie Curie Hospice to provide ‘night sitting’ carers for a handful of nights.
A wider “team of teams” took shape - as well as the district and palliative nurses, Kaz particularly wanted to thank medical/mobility equipment suppliers Medequip, J Docter Pharmacy in Nechells, and Birmingham Hospice – with special ‘shout-outs’ for clinical nurse specialist Leonne Lennon and the occupational therapy team.
“Everybody was superb,” said Kaz. “From my experience, I cannot fault them. I tip my hat to each and every one of them for the way they took care of Jan - and myself as well.
“After the journey I’ve had, I’d love to be able to put something back and support others, and that’s why I want to share our story. I’m quite strong, I came through; but some people could die of broken hearts, wondering what happens next after caring for a loved one at home.”
Pictured above: (left) Jan and Kaz having fun together at home during the Euro 24 final between England and Spain; and (right), palliative care clinical practitioner Sylvia Ferron.