In August 2011, Tŷ Hafan engaged the services of Dame Elizabeth Fradd, a highly respected paediatric nurse, to carry out a review of the care services provided to the life-limited children and families supported by Tŷ Hafan.
This was an independent assessment requested by the Board of Tŷ Hafan to inform strategic decision-making. Dame Elizabeth studied the range of palliative care services provided and critically analysed the quality, delivery, effectiveness and relevance of those services.
She conducted over forty interviews with staff, families, children and other stakeholders, observed practice, assessed systems and reviewed policies, record keeping and business planning.
Dame Elizabeth concluded that whilst there is room for improvement (for example, improved staff communications, regular feedback from families, changes to the reporting process and more status to be given to the current work with siblings), nonetheless, the services provided by Tŷ Hafan are in some areas outstanding. This included the flexible and creative approach to family day care and the model of family support, with the latter being exemplified as a model of good practice for other children’s hospice services to follow.
There were six areas of commendation:
1. External clinical governance work with Cardiff and the Vale University Health Boards
2. Policy Version Control
3. Neonatal care
4. Advance Care Pathways for young people
5. The dependency matrix
6. Ensuring inclusion of families in the documentation review.
The report also recognised that after twelve years, change is necessary and indeed inevitable. Dame Elizabeth provided a number of suggested areas for future development and ways to expand the service range. Work has already started assessing those ideas and the work carried out by Dame Elizabeth has been helpful in the planning process and the continuous improvements being made to the palliative care services we provide.