The Lifetime Service represent the NHS community care team in the home for all children with non malignant life limiting diseases in the Bristol area.
My lifetime nurse was called Helen, and she would visit my Mummy every week, and call her regularly too. Initially she helped to settle me at home, and set up meetings with my GP, the community Paediatrician as well as my Health Visitor, to ensure that my parents had all the equipment they needed, and were as prepared as they could be for the care I would require at home.
Whenever I pulled my tube out, Mummy would call Helen, and she would come round and put it back in The team also trained Daddy to put the tube in himself, and provided additional tubes, tape and syringes for me.
Helen still comes to see Mummy now. I think Mummy misses sometimes all the daily activity that used to happen in the house, and it is nice that Helen can still come and talk to her. They can share tales about me, and also discuss how she is coping.
The Lifetime Service also provide support from Clinical Psychologists. Learning to cope with a child’s terminal illness can be a real emotional rollercoaster. Parents expected a very different life, and sometimes it helps to talk to someone, talk about the shattered hopes and dreams they had, talk about the challenges they face coming to terms with things, share their experiences of living with and raising a terminally ill child, discuss how it has impacted on other areas of their lives, such as friends and family, as well as helping to cope emotionally with a bereavement.
In terms of community care, Community Dieticians, can come to your home, and help with feeding related issues. As I mentioned in a previous section though, we fell outside of the guidelines for this. I was also due to get help from a Community Speech Therapist, she was going to come and observe me feeding to see if she could find a solution for Mummy and Daddy, however, we had to cancel the appointment as it was on the day I was taken to the Hospice.