Patients

The service is for children and young people with medical conditions that are complex enough to require the input of at least two different medical teams whilst they are in hospital. The compass team’s focus is on long-term plans, including planning for home. We work with community and local hospital teams to help identify what care is needed in hospital and what can be given closer to, or at, home

Your child’s condition needs to be stable enough to allow for this stage of care, since we will not generally review patients on a daily basis. But don’t worry, if your child’s condition changes so that daily clinical reviews are needed again, we will step back temporarily to make sure your child gets the day-to-day acute care they need from their main admitting medical team. Sometimes we will step back our involvement if your child’s condition improves, or stabilises such that the number of medical teams actively involved becomes fewer. We will always discuss these decisions with you and the medical teams involved in your child’s care.

The compass team are on site Monday to Friday, 9am-5pm. Questions relating to the longer-term plan for your child’s health can be answered by the compass team. If any urgent concerns arise outside of these hours, your child’s acute specialist teams are available. 

What to expect

We make sure there is regular communication with children, young people and families. You will be given a compass booklet once you are regularly under the care of our team, and there is space at the end of this booklet to write down your and your child’s goals, concerns and questions. We talk through these together, to help plan your child’s care in partnership with you.

Discussions will take place between different teams in and outside of the hospital to help us see the whole picture. We try to give clear, consistent information, but at times there may be differences of opinion or reasons to change plans. This will be discussed openly with you.

Sometimes large meetings are held, with all the teams, to discuss care. You will be asked how you would like to be involved in these meetings. You might want to join the meeting or be updated after.

You will be offered the chance to speak to psychologists about your own experiences. The experience of having a child in hospital can be very difficult, and many families have found this really helpful.

Your child’s overall health and development while in hospital is an important focus for our team. Growth reviews monitor weight and height twice a week, with input from dietitians as needed. Immunisation reviews keep children on track as ill health and hospital admissions can often interrupt the normal schedule. Your child’s development will be monitored and supported by physiotherapists, speech and language therapists, and occupational therapists as needed. The school and play therapists will offer developmentally appropriate social and educational support.

You will be supported in learning new skills. We expect you to engage and attend planned training sessions. The timings will be arranged with you in advance.

Contact

If you have any questions or concerns about the complex paediatrics service, please ask your team to contact the service clinical nurse specialist who is available Monday to Friday, (9am-5pm) or  email: ComplexGenPaeds@
gstt.nhs.uk.