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.
Jessie May currently support families in Bristol, Bath & North East Somerset, North Somerset, South Gloucestershire and Wiltshire*. As of April 2017, Jessie May Nurses began working in teams to provide a more individual and localised service to families. These teams are: Bristol North (covering South Gloucestershire and the north of Bristol), Bristol South (covering North Somerset, Bath & North East Somerset, and the south of Bristol), and Swindon & 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 is our Bereavement Team Leader. She has been working for Jessie May since 1999 and has devoted her career to working with children.
Twenty years ago, she joined Jessie May as a Nursery Nurse in our Extended Team, where she provided support to children, and their families, for 10 years. She then joined our Core Care Team after taking the Jessie May training programme to assist the then Bereavement Support Worker.
Helen’s been an invaluable member of the Jessie May family for over 20 years and today provides vital respite care to children with life limiting conditions, as well as end of life care and bereavement support.
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.
Helen said: “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 with her husband and two sons and started looking for a job in supporting children. She was told about Jessie May when in contact with Lifetime and decided to get in touch and see if we had any opportunities.
Helen said: “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. When I joined, Jessie May had a much smaller team than it has today! There were only 3 nurses on the care team, with a small extended team of nurses. Our caseload has grown, as has the charity and the teams of nurses, and admin and fundraising. When I joined Jessie May, there were around 50 children on our caseload and 25 bereaved families. Now in 2019, there are 140 children and 50 bereaved – and the number of families who need our support is growing.”
Helen’s passion for helping children originally came from an incident that took place 20 years before she joined Jessie May, when she was working in a hospital.
She said: “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 first 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 3 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 Helen’s 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.
Helen said: “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.”
The Purple Group
Jessie May is very proud to offer The Purple Group to bereaved parents. Helen helped set up the Purple Group with Julie Kembrey; a bereaved parent who was supported by Jessie May Nurses. Julie’s daughters Francesca and Josephine were cared for by Jessie May, and after they sadly died, Julie, now a Jessie May Trustee, approached Jessie May and sparked conversations about the need for a bereavement group.
Helen said: “Julie came to us and proposed the formation of a bereavement group for parents on our caseload. We shared ideas and the first Purple Group meeting was held just four months after Josephine’s death.”
Since April 2010, regular Purple Group meetings have enabled parents to remember their children in a safe, confidential space within a peer group and with the support of highly skilled Jessie May Nurses. Five meetings are held each year. Jessie May evaluates the meetings and asks for feedback from parents every couple of years.
Helen added: “It’s really important we are checking up with parents that the meetings are of value to them, and are being led in the best way possible. We are always looking at the days, times and venues where the meetings are held to be as inclusive as possible. We set the Purple Group up as a safe space for bereaved parents to come and talk about their children with other parents who have been through similar experiences. The meetings have no set agendas – no topics of discussion organised to dictate how the meetings go. They are entirely led by the parents who wish to speak. We introduce the parents to each other, and then parents can talk if they wish, or sit and listen.
“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 died. We want parents to know that we are here for them for the long term.”
While Helen offers support to families through hospital visits, she still provides at-home nursing care to children.
She added: “I think it’s so important that children and their families are given a choice about where they are treated and looked after. The choice should not just be a hospice, or hospital, or both. Often families would prefer to be at home, especially at the end of life stage, and that’s what Jessie May Nurses offer – at-home support, where families are happy and comfortable.
“We ensure the same faces – the same Nurses – support each family, so there is continuity in their lives and when the times comes, parents do not have to retell the story of their child’s death over and over again. Our Nurses come to know the children and can remember them with the parents and share special memories.”