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Comensus
Involving Service Users and Carersin Higher Education
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...my experience of end-of-life care
Russell HogarthCommittee member
End-of-life steering group
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I was born in Preston, Lancashire
in 1954Yes, I know you are all
working it out furiously....
That makes me 56 years old...
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I know what else you are thinking...
He looks more like 65 !Let me explain...
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I was born in Bedford Street, Preston, in a 2 up 2 down terraced house.There was Mum, Dad, three sisters and myself.
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No bathroom and an outside loo; bathing was a tin bath in front of the fire on a Friday night, something I still like to do now, but my wife says it frightens the cat!
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The good news was that we soon moved to the country ... well the last house on the edge of the town, next to a field. That was country enough for me!
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I had an idyllic childhood with
Many friends, a loving Mum and Dad and 3 wonderful older sisters who loved to spoil their little brother.
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Aaaaaaahhhhhhhhh!!
At the beach
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Then, when I was about 8 years old, my problems began. I became a carer almost overnight.
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My dad developed terminal cancer.......My Mum, a serious heart condition.
How quickly life can change! One moment, carefree, the next, a
world turned upside down!
By the time I was 11 years old, both had died.
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I had become an orphan and was starting to find life very difficult.
Unfortunately, end-of –life care and and advice was neither offered
nor available.
So life became a learning curve and was just about to change again
overnight.
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A near-fatal car crash introduced me to the world of paramedics and casualty.
This was my personal experience of
end-of-life care after having received the Last Rites with my sisters at my
bedside.
Again, there was no availability for end-of –life advice.
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Preston Royal Infirmary, 1960’s
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Preston Royal Infirmary
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Just when I thought that my dealings with Health and Social Care were at an end, my daughter Rachel was born.Sadly, she was diagnosed to have Cystic Fibrosis
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My child, experiencing end-of -life care, was possibly one of the most difficult and challenging times of my life, as well as hers. These challenges would have been easier to face if end-of-life care advice had been made available.
But yet again, we had to find out the hard way how to cope with the future.
Rachel’s future...............
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At the age of 18, Rachel was able to take responsibility for her own Healthcare.
We have already begun to have end-of-life conversations.
Average life expectancy for Cystic Fibrosis sufferers is approximately 30 years.
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But my role as a Carer was about to begin again, when one of my sisters developed terminal cancer and another developed severe psychosis.
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My sister’s psychosis introduced me to a whole new world of secure mental health services
Whittingham Hospital
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Throughout this time, my own health was deteriorating as a result of mycar crash and a life threatening bout of pneumonia, which resulted in my now suffering from .......
Arthritis / chronic pain
mobility problemsHeart condition /cardiovascular problems
Lung damage/respiratory
problems
Mental health
problems
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....and that’s why I look 65 !
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So you can see that I know, more than most, how important end-of-life care and advice is. With the experience of my parents behind me, my sisters on one side and my daughter on the other, I have my uncertain future in front of me.
Thank You
Russell Hogarth
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Comensus websites
The one-in-four film festivalhttp://www.uclan.ac.uk/schools/school_of_nursing/one_in_four_fil
m_festival.php
The Comensus Health & Social Care Resource Libraryhttp://www.uclan.ac.uk/schools/school_of_nursing/comensus_res
ource_library.php
Comensus websitehttp://www.uclan.ac.uk/schools/school_of_nursing/
health_comensus.php
SUCAG websitehttp://www.uclan.ac.uk/schools/school_of_social_work/sucag.php