"End of Life care"

About: Victoria Hospital / Cardiology

(as a relative),

After caring for my father who was in the final stages of heart failure for over 2 years I have been left with the overwhelming feeling that end of life care just depends on what you are dying of.

I experienced first hand the reality and difficulty of putting in place everything possible to make dads final journey as comfortable as possible.

I attended all dads consultant appointments, sat in A & E for hours, discussed with dads own GP any changes to dads condition or new ailments all with dad full consent and appreciation. Home visits for heart nurse, dads own GP even dads dentist became the norm for us.

I was never trying to save dad all I ever wanted was for dads final journey to be as loving cared for and as peaceful as possible not a big ask, as far as I was concerned the very least you can do for another human being.

Dad was clinically depressed and feeling he just did not want to live, kept saying if I knew what to take he would. But he was also scared if he tried this he would end up worse than he was and be more of a burden. I did mention this on one of his many admissions to hosp and ask for someone to speak to him, as far as I know this was never done. His own GP did listen to me one day and put him on medication which helped him so much. He was like the dad I knew more settled in himself and at peace which was all you can ask in anyone's final journey.

Out of this experience I would like something positive to come out of it and perhaps learn something. Dad and I had a long journey and at times I was fighting his corner when he couldn't. we have a tick box system and life doesn't fit into boxes one size does not fit all.

So please if someone is reading this and would like the full story I would be more than happy to relay this either a call, visit whatever, we learn from experience. I was told that dad was lucky to have the family he had and that I was always ten steps in front of arranging anything dad required ie chair lift, carers, etc all that said to me was it shouldn't be down to luck and if I was ten steps in front someone was ten steps behind me.

I want positive to come out of some negative we went through the past few years. Dad appreciated everything that was done for him over many years so much so the he donated his body to medical research.

I couldn't be prouder of him. Contact me if you feel we can help anyone for our experience.

Do you have a similar story to tell? Tell your story & make a difference ››


Response from Louise Ewing, Patient Relations Manager, NHS Fife

picture of Louise Ewing

Dear Brojack

Thank you for taking the time to share a bit of your story with us. I felt very saddened by your account yet hopeful that we can turn some of the negatives you describe into positives and things to learn from. You clearly had a very special relationship with your Dad and losing him must have been really hard for you, so please accept my sincere condolences.

I would love to meet you to hear more about your experience and to consider ways in which we might use your story to learn from. Please phone me to arrange this and when you do make sure you ask to speak to me directly.

I hope you don't mind me saying so but I feel sure that your Dad would be very proud of your bravery in telling this story and your desire to help others by sharing it. I look forward to speaking to you soon.

Very Kind Regards

Louise Ewing

01592 648153

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Response from Craig White, Divisional Clinical Lead, Directorate of Health Quality and Strategy, Scottish Government

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Dear Brojack

Thank you for sharing your personal experience of the care and support provided to your Dad. Hearing about experiences like yours and your Dad's is such a powerful way to learn and help inform areas requiring change and improvement. I was very struck by your statement about having to anticipate what was going to be needed next and be steps ahead - this should not be the way that it is and I would want to apologise that you had the added concern about this in addition to everything else that you would have to had cope with.

I would like to take up your offer to meet and to hear about your personal experience.

At a national level we are committed to learning from patients, families and carers. National meetings now start with a focus on recent experiences of patients, families and carers - acting us a reminder of the reasons we are working collectively to make things better for everyone who may benefit from palliative and end of life care in Scotland. This helps us all ensure the focus of discussions is on what matters most to people and to identify what actions can really make a difference. It would be really helpful to connect with you personally so that we might explore possibilities with you.

Thank you again for sharing your personal story and of your strong commitment to helping all of us who strive to improve care for those who are approaching or who are at the end of their life.

If you would like to make contact to arrange to meet in person, my colleague Janice.Birrell@scotland.gsi.gov.uk would be pleased to hear from you to discuss when and how best to arrange this.

With best regards,

Professor Craig White

Clinical Lead and Chair of the Palliative and End of Life National Advisory Group

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