"Our experience of End of Life care service"

My dear father passed away peacefully in his own home, just before Christmas. It was his wish to be at home and we thank everyone for making that happen. This wasn’t an easy process and services were difficult to navigate. We particularly wanted our feedback to focus on the Palliative team – who were a blessing amidst the pain of losing a loved one. 

Dad’s death was expected but unexpectedly sudden. He had just turned 64 years old. He had been referred to the Palliative team upon discharge- in hindsight we would have found it beneficial if this referral had been made earlier (Dad was given a palliative diagnosis some six months ago). Developments needs to take into account that care pathways need to be more defined.

From discharge to death we had 11 days. The palliative team were a welcome reminder of things to consider and plan and became involved in his final week. Having them on board eased the coordination that we had found ourselves drowning in. Sadly, before they became involved the quality time that we should have been spending with dad was compromised - but once they visited this burden had eased. We cannot thank them enough.

In terms of our journey we were absolutely agreed that dad was at the centre of any care arrangements. The homecare support had to be changed due to safeguarding issues and we ensured that poor practice was raised with the provider and the commissioner. The Marie Curie night sitters were a huge source of support, if it hadn’t been for such a valued service our mother would have struggled to sustain her role as the main carer.

Going forward we do believe that Palliative care services need to be developed and personalised in care. For example dad would have benefitted from spending quality time with his wife. We were offered a sitter to sit with dad but there needs to be some flexibility with such services- if services could provide support with daily activities then this would have freed mum up to be with dad (This is what he would have wanted and was more culturally appropriate in our situation).

The Palliative team itself designed all its support and placed our father at the heart of its care- their focus was always to make services far more responsive to his individual needs. The service from the Palliative team promoted diversity and equality across all their activities including all service provision. The skills and knowledge that Naz brought to our fathers care was amazing. His empathy showed no bounds and he was able to support in a cultural and religiously informed manner. It was essential that dad had someone who spoke his language and was able to advocate for him in a professional manner. He went above and beyond his job role. Naz had expert knowledge around beliefs, practice and cultural competence. He was able to take account of cultural and linguistic diversity. Having such a worker reduces the fact that ethnic minority groups encounter health inequalities- this included access to services and raising concerns of poor quality in services. We appreciated that the service was delivered in a culturally sensitive way from a worker who was culturally competent and tailored his approach. His humanitarian approach post our fathers passing has been a breath of fresh air.

A special thanks to Katherine (Palliative Team Nurse) who will remain in our thoughts forever. Katherine made us aware of the end of life care and signs in such a measured way. She told us in a gentle and sensitive way – knowing what we were ready to hear.

We are more than happy to be contacted to discuss any of the above.