Hospices offer palliative, emergency and end-of-life care, and planned respites. Mothers, fathers, grandparents and siblings are all welcomed into their caring environments.
The organisation ACT and Children's Hospices UK campaigns for improved provision of children's palliative care services. It supplies professionals with a range of educational tools and resources to improve their knowledge and skills and helps them campaign for better provision.
Care Team Members (CTMs) work with children aged from a few days up to their early twenties. As part of a small multidisciplinary team, they are responsible for a number of families from the point of referral to the hospice, often phoning them to arrange their first visits. They work a 40-hour week mixing early shifts and late shifts that extend into the night. A 9am to 5pm shift gives opportunities to catch up with families on the phone, make home visits or visit the child's school.
The CTM works one-to-one with a specific child carrying out all aspects of the child's care within a loving, caring atmosphere. Following the child's care plan, the carer will get the child up, bathed and dressed, eat meals together, organise activities and create a fun and happy day. At the end of the shift, they record notes about the session and update medical records. CTMs also provide bereavement care for as long as a family wishes to stay in touch.
QUALIFICATIONS AND TRAINING
CTMs may have a background in early years care and education, teaching or sick children's nursing and are appropriately qualified and experienced. On joining a hospice, they complete a two-week induction period working alongside other team members and learning how to carry out the routines and procedures correctly. After this, training is ongoing.
A hospice may employ education co-ordinators who are responsible for organising training to ensure the whole care team is kept up to date with best practice. There may be monthly team meeting days with training delivered by specialist providers. Some hospices hold an annual review week when they close for staff training. End-of-life and palliative care training is available to all staff.
ACT and Children's Hospices UK delivers Train to Care learning modules to hospice organisations, teams and networks at a time and place that is convenient. It also provides open study days for interested individuals, subject to demand. The modules start at a basic level and build up to more advanced and in-depth sessions. The accredited Train to Care team can adapt or combine modules to ensure that the content is accessible and relevant to a wide range of professionals.
The learning modules cover the breadth of children's palliative care, including:
- an introduction to children's palliative care
- sharing significant news
- care pathways for children
- palliative care for neonates
- transition care pathway
- end-of-life care for babies, children and young people
- data and its importance to children's palliative care services
- advance care planning.
FURTHER INFORMATION.
- Children's Hospice South West, www.chsw.org.uk/supportus
- ACT and Children's Hospice UK, www.actchildhospice.org.uk
CASE STUDY: TRACY CHAPMAN
I work at Children's Hospice South West as part of a multi-disciplinary team of three, responsible for 12 families. We work one-to-one with a specific child, carrying out all aspects of care just as the family would at home. 
My early shift begins at 7am when the night staff give me details about the child's sleep and any special programme currently needed. First jobs include getting the child up, bathed and dressed before we go to the communal dining room for breakfast. Staff and families eat together, so it's a great time to have a chat. Then it's playtime, when we aim to create as many good memories as possible for the family. It's all about having fun and a variety of great facilities are available to use.
If I am with a child who enjoys being in water, we may spend time in the spa room - the Jacuzzi is great for children with stiff joints and muscle spasms to relax. Or we might spend the morning in Kaleidoscope, our multi-sensory room, playing with the fibre optic lights or waterbeds. Often we spend time with another child and their care worker. This could involve playing a game of hide and seek in our garden, going for a walk or playing in the games room.
At lunchtime, it's back to the dining room, where Cook may have prepared one of the child's personal favourites. I hand over to a colleague at 3pm, but first I write up my notes detailing how the shift has gone and updating medical records. We then have a 20-minute session with our colleagues called 'Chat' where we share experiences from the shift and support each other.
We have a lot of positive feedback from parents. When they witness their child having fun you can see a weight being lifted from them and you know you have helped create a precious moment for both. This is very satisfying and is what CHSW is all about - making the most of short and precious lives.
- Children's Hospice South West has two hospices in the southwest, Little Bridge House in Devon and Charlton Farm in Somerset. A third special home from home, Little Harbour in St Austell, is due to welcome its first families in December 2011.