At Jessie May we know that loss can start even before diagnosis; when parents realise that maybe something ‘is not right’ with their child and continues all through their child’s life and after their death. This is why our Bereavement Support Service is available for parents when their child is accepted onto our caseload and for up to five years after their child has died.
Our Bereavement Support Service is led by a Bereavement Team Leader alongside Bereavement Support Nurses, and because some of our parents have told us that often they prefer to be supported by the nurses who visit their children, all of the Jessie May nurses have training in listening skills and supporting parents and are experienced in offering support and a listening ear both before and after the death of a child.
Parents might want to think about what will happen when their child reaches the end of life stage and consider their wishes at this time. They may also want to think about their child’s end of life care plan or funeral planning. The Jessie May Bereavement Team and Care Team are experienced in supporting parents around any advanced care planning they may wish to explore.
After a child dies, we are there for parents for up to five years; for as often or as little as parents need. We are able to offer families memory boxes and memory bears to collect memories of their child’s life and can refer siblings to a charity, The Harvey Hext Trust, where they are able to create their own memory box to remember their sibling who has died, if they wish.
The Bereavement Support Team facilitate a parents’ bereavement support peer group called the “Purple Group” which meets five times a year, where parents can get together for mutual support and understanding. The group, which was founded by one of Jessie May’s bereaved mums, meets regularly for two hours and refreshments are always provided. The group enables parents to meet others who may have had similar experiences to offer each other support and understanding. There is no fixed agenda, so parents can come and talk about whatever they want to on the day. Over the last 12 months, the group has had to meet virtually and Jessie May are considering continuing to offer this in addition to meeting face to face.
“I found it very helpful to speak about the loss of my child without the need to go into great detail. I knew the other parents understood. I wish that more bereaved parents could access a group like the Purple Group”
Anniversaries can be a difficult time for bereaved families. At Jessie May, we remember all of the children on our caseload on their birthday and their anniversary by sending a card to the child’s family to let them know we are thinking of them and remembering their child.
“Thank you very much for sending out the birthday anniversary cards – it’s Charlie’s birthday today and it always touches me when I open the Jessie May card”
If parents wish, we will continue to invite the families on our bereavement caseload to our Family Days and Christmas Party. Although this can be very hard to attend without their child, many parents have found they have appreciated being able to meet up with the families and Jessie May staff they got to know again.
Jessie May recognises that Christmas can be difficult for many families, so in December we hold our ‘Tree of Light’. It has grown into a wonderful opportunity for every one of our families to come together to remember and celebrate of all of our Jessie May children.
The Tree of Light consists of a non-religious, but spiritual celebration, with readings, music and singing. A star with the name of every child on the Jessie May caseload who has died is put on the Tree of Light and those present have the opportunity to hang a star on the tree to remember their child or a loved one. Many of the Jessie May Nurses attend alongside Jessie May Staff, Trustees and supporters. Every family who Jessie May has supported since 1996 will continue to be invited if they wish.
“Going to the Tree of Light Celebration was scary, as the pain at Christmas time of losing my son is so hard. The ceremony is amazing and beautiful; and it helped being in the company of other people who have lost a child. I left the ceremony with a warm content feeling at the Jessie May staff are always amazing and go above and beyond to help any member of our family or friends who attend, to feel peaceful. The Tree of Light is now a tradition that I will go to and take my other children to remember our lost star.”
Throughout the five-year period, we continually review the level of support we offer to meet the needs of individual parents. If any parents choose not to receive bereavement support from Jessie May initially, the invitation to use the bereavement service remains open, should they wish to make contact at a later stage. Parents may also opt out of our Bereavement Support Service at any time during the five-year period, if they wish to do so.