Thursday 20th June 2013
Tracey Adjei, Children’s Macmillan Community Palliative Care Nurse, shares the innovative work of the Hull Macmillan Children’s Palliative Care Team.
Our team cares for children, teenagers and young adults with cancer in Hull and East Yorkshire. We received initial funding from the Big Lottery New Opportunities Fund in December 2003. Eight years on the team consists of: three children’s nurses, a play specialist, a clinical psychologist, a social worker and administration support.
Our jobs are really rewarding and we have run some fun and unique activities for the children and families in our care. Last year, with the help of charitable funds, we had the pleasure of taking 60 bereaved siblings to Hull’s aquarium, The Deep, for a sleepover. The children, aged 7-16, had a great time, painting T-shirts, badge making and enjoying other activities. They were supervised by the team and staff at the aquarium, giving their parents time to recharge.
We then let off lanterns to remember the children who had died. It was a very special time for the children, who could express themselves openly. They also had the chance to sleep with the sharks, not, to be honest, that anyone got much sleep.
The nursing team provides care at home in the community, helping to reduce the number of hospital admissions, allowing children and families to be at home in familiar surroundings. We liaise closely with the multidisciplinary team and perform nursing procedures, clinical interventions when necessary, symptom management, end-of-life care and bereavement support, and follow-up for family and friends.
Another unique part of our service is providing ‘quality time’ for parents, a form of respite at home between 9am and 5pm, Monday to Friday, for up to four hours. This gives them time and peace of mind to relax, have a bath, sleep or shop, knowing that a nurse is caring for their child.
Play at home
Our play specialist facilitates play at home for the child with cancer, including activities such as art and crafts, messy play, music, singing and much more. The specialist befriends the child and family, paying attention to the child’s siblings and striving to maintain normality in sometimes challenging circumstances.
It has been recognised in the team there is a role for clinical psychology skills in children’s palliative care, and we are presently taking advice on the management of children’s experiences and difficulties with cancer. Staff supervision and support are also available when needed. Our social worker offers practical and emotional support to children and families to help them deal with some of the stresses of everyday life when caring for a child with cancer.
The highly valued administration team is second to none. They pull together all the assessment documents, liaise with specialist professionals and always know where we all should be.
Once a year, we hold a memorial day to remember all the children we’ve helped who have died. It is well attended by families. We add a leaf for each child to our tree, with their name. End-of-life care is a small part of our work but leaves a big impact on all.
Email Tracey Adjei, Children’s Macmillan Community Palliative Care Nurse, Hull Macmillan Children’s Palliative Care Team.