A Carer Skills Passport for carers of children and young people with complex long-term conditions

• Run by Alder Hey Children’s Hospital, with Aintree University Hospitals, Health Education Northwest and Edge Hill University
• Project ensured care was delivered to children with complex health care needs in the same way, regardless of care setting, or who was caring for them
• Trained parents and carers in the same way, to the same standards and recorded training in the Carer Skills Passport, making it transferable across care settings
• Project ran from January 2017, with project completion expected in late July 2018

Children and young people with complex long-term conditions need considerable support from their parents and carers to remain well and lead active lives. This ranges from basic washing and dressing, to tracheostomy care and administering medicines.

This project involved the development of a Carer Skills Passport, to address the lack of accessible, quality-assured, training for parents, and paid and unpaid carers of these children.

The Carer Skills Passport provides parents and carers with access to standardised care skills training and regular updates. Training and competency assessments are documented in the passport, which is transferable across care settings.

Uptake of the Carer Skills Passport was facilitated through executive leadership, engaging the steering group and awareness raising across the network. There are now more than 80 professionals, parents and carers registered with the Carer Skills Passport website and the online training calendar alone has had in excess of 217,000 hits. 

Carer Skills Passport training is linked to inpatient discharge planning when new care needs are recognised, annual class planning at special schools and connecting with ward-based practice educators. Parent involvement is encouraged when school and care staff receive training or updates. Ward managers are supported to use the Carer Skills Passport with weblinks on ward PCs and guidance incorporating QR codes.

To ensure sustainability, the Carer Skills Passport has been embedded in the Trust ‘standard offer’ for children with complex long-term conditions, linking to Continuing Care commissioning.  A ‘train the trainer’ model has been implemented to allow scale up and spread, including increasing the number of Carer Skills Passport trainers and seconding clinical staff on a sessional basis.

Contact information

For more information about this project, please contact Dr Lynda Brook, Macmillan Consultant in Paediatric Palliative Care, Alder Hey Children’s Hospital.