Jessie May Nurse Claire tells you how we work and how we can support your child and family
The Jessie May Service
Jessie May Nurses are free of charge to families. They currently support families in Bristol, Bath and North East Somerset, North Somerset, South Gloucestershire and Wiltshire*
Jessie May recognises that the whole family is under huge emotional and physical strain when a child has a life limiting illness. Through our team of dedicated Jessie May Nurses we provide specialist care and support to help alleviate some of this pressure. This support is provided in the comfort of the family’s own home whenever possible from the time of diagnosis onwards.
The care we provide is holistic, individualised and family-centered, working closely with other professionals involved in supporting the family to ensure continuity of care and that all needs are met.
Jessie May Nurses can provide:
- Respite Care
- Nursing Care
- End of Life Care
- Bereavement Support for up to 5 years following a child’s death
- Practical, emotional and Telephone support
- Social and Support Events
Jessie May are proud to have a team of incredibly dedicated nurses who put children at the heart of their work.
Helen Williams has been working for Jessie May since 1999 and has devoted her career to working with children. She’s also spent her time with us supporting the families of children in her care, to try and make sure family life goes on as normal.
Helen’s resolve to help children came from an incident that took place shortly after she began working. Here’s her story:
“In 1979 I was working in a local hospital and a new born baby girl was referred to us from another local hospital. She had multiple problems, including Spina Bifida and Hydrocephalus (water on the brain). The condition was so severe, it was inoperable and she had no chance of surviving beyond her first few days of life.
She spent her time in a clinical, dimly lit room and we were given instructions not to ‘let her get used to being handled’; not to talk to her, to pick her up or cuddle her. She wasn’t even given a Christian name. All we were allowed to do was give her morphine for pain relief and some water. This situation was distressing enough for all of us, but made even more so as neither of her parents came to visit her. We were told not to become too attached to her.
For three days she lay in this room. For most of the time she was in complete isolation, there were no pictures on the walls – nothing for her to focus on and take in her surroundings. I couldn’t help myself – when no one was looking I would go into the room, talk to her and hold her for short periods of time. I couldn’t let this baby be on her own any more than she needed to be or to die without knowing what it felt like to be touched or cuddled.
Her parents never visited and she died on her third day with us.
Attitudes are very different today and I know that every healthcare professional involved would do everything in their power to help make her as comfortable as possible. I am sure that, if she was born today, her complications would still be so severe there would be no change to her prognosis. The biggest difference would be in how the family would be supported to spend time with their baby. Had Jessie May have been around in 1979, they would have undoubtedly been able to support the family if they had chosen to take her home in her last few hours. I know that she would not have been left on her own in that clinical, dimly lit room to die alone.
I have no idea what happened to her parents after this and whether they received any support or even if they came down to visit their daughter’s body.”
This incident shaped Helens opinions of how children should be cared for, and she decided that she was going to dedicate her life to caring for other children with complex needs.
After qualifying for her Nursery Education Board qualification, Helen worked at St. James University Hospital in Leeds and Martin House Hospice in York, which was only the second children’s hospice to open in the UK. At Martin House she started doing respite visits with families, including tea-time visits and overnight care. “Following overnight respite visits I would go home and take my own children to school before catching up on a few hours’ sleep. Although sometimes I was physically exhausted, I knew my daily routine was still easier than the routine of many of the parents I provided care for.”
Helen moved back to Bristol in late 1998.
“I was made aware of Jessie May and its work and I decided to call them and see if they had any opportunities. Jessie May’s ethos of care fitted so much with my own – I knew from the point I first met them that I wanted to work with them.
I have the great privilege of working with the most extraordinary children and families today. Although we know that our children are life limited most of them aren’t ‘dying today’. Therefore our work is about ensuring that they have the best quality time possible. Advances in technology and care practices help children to live healthier lives but it also places greater long term pressure on families.
I strongly believe that the relationships we build with parents when we start working with them are vital. When children’s needs become more complex and sadly they die, I know the work we do years before will help ensure that we become a trusted support mechanism for the whole family, especially during the child’s end of life stage and for several years after their death.”
Helen is the Bereavement Lead nurse at Jessie May. She helped set up the Purple Group, which is a safe space for bereaved parents to come and talk about their children. Helen is passionate about the support we offer to families. She says: “Some parents find that the support from friends and colleagues can taper off in the years after they have lost their child. We commit to offering bereavement support for five years after a child has passed away. We want parents to know that we are here for them for the long term.”