1. Comensus Involving Service Users and Carers in Higher Education

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

3. I was born in Preston, Lancashire in 1954 Yes, I know you are all working it out furiously.... That makes me 56 years old...

4. I know what else you are thinking... He looks more like 65 ! Let me explain...

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

7. 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!

8. 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!

10. 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.

11. Aaaaaaahhhhhhhhh!! At the beach

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

13. 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.

14. 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.

15. 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.

16. Preston Royal Infirmary, 1960s

17. Preston Royal Infirmary

18. 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

19. 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. Rachels future...............

21. 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.

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

24. My sisters psychosis introduced me to a whole new world of secure mental health services Whittingham Hospital

25. 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....... Arthritis / chronic pain mobility problems Heart condition /cardiovascular problems Lung damage/respiratory problems Mental health problems

26. ....and thats why I look 65 !

27. 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

29. 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 http://www.uclan.ac.uk/schools/school_of_nursing/one_in_four_film _festival.php 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