Sue Ryder Care: specialist support for bereaved children

Two hospice charities in Leeds are offering a much-needed bereavement support service for children affected by relatives’ deaths in the city. Anabel Unity Sale reports

The death of any loved one is distressing. Grief can be particularly hard for children and young people as they may not fully comprehend what happened, or how to cope with their feelings.

To help children and young people through the bereavement process healthcare charity Sue Ryder Care has created a specialist support service at one of its hospice in Leeds, West Yorkshire. Sue Ryder Wheatfields Hospice, in the west of the city, provides care and support for people with specialist palliative care needs and their families.

As well as 10 community nurse specialists, it also has an 18-bed in-patient unit for people referred for symptom control, and a day therapy unit for 16 patients.

Christine Ellis has been head of family support at Wheatfields for nearly four years. She noticed early on the need for a dedicated service to support the children close to adults using the hospice.

She says: “We felt children’s needs around dealing with serious illness and bereavement were not being met. Children are often excluded from hospice services and parents don’t always talk to them about what’s going on. Children then feel they have nowhere to go with their anxiety and we felt it was important children had their own service to cope with serious illness and bereavement, and the changes within their families.”

In November 2005 Wheatfields applied for funding from BBC Children in Need to create such a service and in November 2006 was awarded a three year grant.

Partnership working

Working in partnership with St Gemma’s – a hospice covering the east of Leeds – the St Gemma’s and Wheatfields Hospices’ Children’s Young People’s service was launched in February 2007.

Ellis says: “The aim was to develop a children’s service at both hospices to take referrals of under 18-year-olds from our family support team and St Gemma’s social work team.”

The service also receives referrals from other hospices, Leeds Teaching Hospital Palliative Care Team and the child and adolescent mental health service.

Dan Bordoley joined the service when it was created as children and young people’s worker, based in St Gemma’s.

He works with children aged 4-13 by playing games and doing activities while discussing their feelings about the loss of their loved one and one-to-one counselling with 14-18 years olds. Drumming sessions and rock climbing, as well as drama therapy, are also offered.

Twice a year the hospices run A Day to Remember session, on a Saturday, where between eight-12 children and young people gather to do activities and talk about, if they wish to, their loss.

Bordoley says: “The young tell us they find being around other young people who have experienced similar things really useful because among their classmates at school they feel isolated. A lot of the time they don’t get to say what they are feeling because they don’t want to upset their parent or carer or friends.”

Additional support

He and Ellis also signpost parents and other practitioners on to appropriate agencies if they need additional support or advice about how to deal with bereavement.

One of the young people the bereavement service has helped is 15-year old Cheryl*. Her mother Magaret’s* father died of cancer in April 2008, having spent his last 10 days in St Gemma’s hospice. Cheryl was very close to her grandfather and deeply affected by his death.

She says she didn’t want to talk to anyone about her grandfather’s death: “I was in denial. I felt very angry he’d gone away and I was teary. I stayed in bed for a couple of days.”

Margaret, who was having grief counselling at St Gemma’s, contacted Bordoley 10 weeks after the death about Cheryl. “I felt we couldn’t reach her because we were all too emotional about it, we were all grieving. I could see that Cheryl was really suffering,” she says.

Cheryl began seeing Bordorly once a week for six weeks in November 2008. When he first visited her family home she says didn’t want to talk to him but began to feel more relaxed when he chatted over a game of Jenga. Bordorly encouraged her to attend drama therapy with other bereaved children and a remembrance day.

Cheryl says: “Being with the other kids felt like I wasn’t the odd one out, I fitted in with them. It made me feel accepted and happier.”

The key to successfully working with children and young people facing bereavement – be it before or after their loved one has died – is to tailor your practice to their needs, Bordoley says.

Ellis advises practitioners to maintain appropriate boundaries: “Serious illness and death are very emotional and stressful issues. You have to stay professional and remember what tools you have to help the child or young person through it, and take into account what resources their family has. Very often helping the whole family will help the child.”

Working with bereaved young people:

• Include the child in discussions about what is appropriate to help them and their family and work at their pace

• Answers the child’s questions honesty within the parameters of their understanding and development

• Speak to local authority palliative care services about what support they offer for children and young people

* not their real names

This article is publlished in the 2 July issue of Community Care magazine under the heading Specialist support for bereaved children