Comensus Involving Service Users and Carers in Higher

Comensus Involving Service Users and Carers in Higher Education

Russell Hogarth Committee member End-of-life steering group . . . my experience of end-of-life care

I was born in Preston, Lancashire in 1954 Yes, 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.

At the beach Aaaaaaahhhhh!!

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 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-oflife 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-oflife 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 my car crash and a life threatening bout of pneumonia, which resulted in my now suffering from. . . . n nic pai ro is / ch s t Arthri roblem Heart co bility p mo ndition /c ardiovasc problems ular h healt ental M s y oblem pr pirator s age/re m ung da L s roblem p

. . 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 festival http: //www. uclan. ac. uk/schools/school_of_nursing/one_in_four_film _festival. php The Comensus Health & Social Care Resource Library http: //www. uclan. ac. uk/schools/school_of_nursing/comensus_resour ce_library. php Comensus website http: //www. uclan. ac. uk/schools/school_of_nursing/health_comensus. php SUCAG website http: //www. uclan. ac. uk/schools/school_of_social_work/sucag. php