Comensus

Involving Service Users and Carersin Higher Education

...my experience of end-of-life care

Russell HogarthCommittee member

End-of-life steering group

I was born in Preston, Lancashire

in 1954Yes, I know you are all

working it out furiously....

That makes me 56 years old...

I know what else you are thinking...

He looks more like 65 !Let me explain...

I was born in Bedford Street, Preston, in a 2 up 2 down terraced house.There was Mum, Dad, three sisters and myself.

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!

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!

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.

Aaaaaaahhhhhhhhh!!

At the beach

Then, when I was about 8 years old, my problems began. I became a carer almost overnight.

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.

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.

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.

Preston Royal Infirmary, 1960’s

Preston Royal Infirmary

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

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...............

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.

But my role as a Carer was about to begin again, when one of my sisters developed terminal cancer and another developed severe psychosis.

My sister’s psychosis introduced me to a whole new world of secure mental health services

Whittingham Hospital

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

....and that’s why I look 65 !

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

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