"End of life care"

My mum sadly passed away in Medical Assessment Unit in Causeway Hospital in July 2021. It was an extremely difficult time but throughout we met numerous health professionals who made such a difference.

 Up to her admission to Causeway through ED mum had no support at home and no one taking control of her cancer diagnosis. There were numerous hospitals and trust involved in parts of her care but no one was tying together every element and even though as a family we knew she was dying we had no support in the community.

When she was discharged after each hospital stay there was a MDT assessment undertaken in the absence of any conversation with family and her needs when she was discharged was greater than they recognised. Even when we rang the duty social worker for help in NHSCT we were informed they would not do anything different to the hospital social work team and that it wasn’t my role to dictate what mum needed. Needless to say ringing a social worker in the last 6 weeks of my mums life created more anxiety and distress.

I wish I had never called; however aside to this part of our experience  I want to acknowledge the exceptional care we received when mum was admitted to Causeway. Mum was in resus for 11hours and the nurses who attended were amazing. They recognised her need for pain relief and comfort, they involved ourselves as family in the discussions and they demonstrated compassion in such a very difficult environment. Particularly S/N Margaret who even when leaving her shift stopped to speak to the family and support us all.

Mum was transferred to MAU that evening and at this stage we knew mum was extremely ill. The staff once again supported one member of the family to stay with mum and support delivery of care to mum as she had deteriorated to full nursing care in a matter of 24hours. This was the first time in mums whole illness that the ward manager of the unit sat down with us and talked about mum and our journey. Sister Patricia demonstrated the heart of nursing - a great role model and to have her sit with us made the family feel valued and important in mums care.

Up to this point mum had been in 5 different wards in Antrim hospital and never once did a ward manager speak to the family even on the phone… when sister spoke with me it reassured me that they were looking after mum and they knew we needed to be involved. I can’t name all the nurses who looked after mum but each one was exceptional. To name just a few that I remember but there were so many more- we will be forever grateful for the care from Geraldine, Chloe, Rebecca, June, and HCA Suzanne (who just lit up everyone’s day). I wish I could remember everyone’s name. 

When it became clear mum was not going to be fit for home we were supported with a side room and space to sit with mum. The nurses ensured my elderly father was cared for and encouraged him to eat and to take short walks. He never left her side in the last 72hours. The final hours were difficult- mums pain was uncontrollable and at times it felt like we were fighting with the medical team to try something.. anything to help mum to be comfortable but finally something shifted and when mum died it was peaceful and mum was surrounded by her whole family. This was so important to the whole family and I want to recognise the role of patient flow and the senior management team in supported the family to be in a side room and to have privacy at such a heartbreaking time.

I would also like to thank the Macmillan palliative care team who supported the family at the hardest time when mums pain was out of control. As a family we were distressed and angry and the palliative care team calmly managed us as well as mum and I have no doubt it wasn’t easy. It is just over a month since mum passed away and it has been an extremely difficult time but I would like the nursing staff and teams in Causeway Hospital to know that they not only made a difference to mum, they also made a difference to the family and we will be forever grateful.