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Mum's end of life care

Posted By Voice66

"Mum's end of life care"

About: Royal Alexandra Hospital / Accident & Emergency Scottish Ambulance Service / Emergency Ambulance

(as a relative),

A sudden fall meant that my mum needed secondary care intervention. A future care plan made all the difference, it allowed her wishes to be present from 111 to ED. The GP did an excellent job summarising mum's clinical wishes into an electronic shared document. What also helped was that I knew the system and could use her written word to support me, make sure mum's voice was heard.

The challenge to all of that is that our beloved NHS always tries to fix and uses process/guidelines for active treatment. But the future care plan allowed for a paramedic decision at home being one of blue light or a comfy cruise but they were worried that ED look only at the numbers … not the story. Mum had a comfy cruise.

Once at RAH Paisley, the ED nurses and doctor listened and altered their care to adapt but you could tell that wasn’t how they would normally progress things and felt the need to justify going against the normal fix it way of working and the guidance processes. Mum didn’t have multiple bloods or a chest x-ray as she had made it clear that care should be palliative and conservative as in her 80s she wasn’t about to get better. That was hard for staff to take on at first but they listened and the clinical care was perfect.

Mum died unexpectedly in ED and their compassion was amazing and mum didn’t have invasive investigations, the fix it medicine approach, but I had to work hard at making sure that happened and giving them permission on mum's behalf.

We have realistic medicine as a cornerstone, but in reality the practice of that is still overshadowed of doing the right clinical intervention/treatment. I am not sure what would have happened if my advocacy wasn’t present as she was a frail but still had capacity but we do make judgements.

All of that said, mum and I were listened to, the care was fantastic, not just compassionate but time being taken, talk back was used, Thank you.
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Responses

Response from Kevin Torbet, Admin Assistant, Patient Experience and Public Involvement, NHSGGC 2 weeks ago
Kevin Torbet
Admin Assistant, Patient Experience and Public Involvement,
NHSGGC

Submitted on 09/10/2025 at 11:20
Published on Care Opinion at 11:20

picture of Kevin Torbet

Dear Voice66

Thank you so much for taking the time to share such a moving and thoughtful reflection on your mum’s recent care journey.

First and foremost, please accept our sincere condolences on the loss of your mum. We are truly sorry for your loss and grateful that, even in a time of sadness, you took the time to acknowledge the care she received and to reflect on how the system supported — and at times challenged — your shared wishes.

Your story highlights the vital importance of personalised care planning and the role it plays in ensuring that patients' voices are central to every clinical decision. It is heartening to know that your mum’s wishes were respected from the first point of contact — from 111 through to ED at the Royal Alexandra Hospital — and that staff adapted their care with compassion and sensitivity.

We also acknowledge the challenges you raised — that delivering truly person-centred, realistic medicine can sometimes feel at odds with well-established clinical pathways. It is clear that your understanding of the system, and your role as an advocate, played a crucial part in helping your mum receive the kind of care she wanted and deserved. Thank you for being her voice, and for allowing us the opportunity to learn from your experience.

We will ensure your kind words — and the thoughtful reflections within them — are shared with the teams involved. Your feedback will not only mean a great deal to those who cared for your mum, but also contribute to important conversations about the balance between clinical best practice and compassionate, individualised care.

Thank you again for your message and for highlighting both the humanity and the complexity in end-of-life care. We hope you find comfort in knowing that your mum was listened to, respected, and treated with dignity throughout her final moments.

Kind regards

Kevin

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Response from Marie Kennedy, Patient Experience Manager, Corporate Affairs, Scottish Ambulance Service 2 weeks ago
Marie Kennedy
Patient Experience Manager, Corporate Affairs,
Scottish Ambulance Service

Submitted on 09/10/2025 at 20:35
Published on Care Opinion at 20:35

picture of Marie Kennedy

Dear Voice66,

First and foremost, my sincerest condolences to you and your family on the loss of your beloved mum. As Kevin has already expressed thank you for sharing such a powerful and thoughtful account of your mum’s care especially at what must be such a challenging time. It’s clear how much love and advocacy you brought to every step of her journey and I’m so glad her wishes were respected.

We’re grateful to hear that the ambulance crew, ED team and wider NHS partners took the time to listen and adapt their care with compassion. It’s not always easy to step outside the usual processes, but your mum’s story is a reminder of how important it is to do so.

Wishing you and your family peace and comfort.

Warmest wishes,

Marie

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