As the UK’s charity for children’s palliative care, we collected data, using questions based on the NICE guideline’s baseline assessment, from the regional children’s palliative care networks, on current service provision, and then collated and analysed these responses to inform the development of:
- A report on the findings, for NHS England and the networks.
- A tool for the networks to benchmark themselves against other networks, to inform their work plans.
- A compendium of local solutions, provided by networks to enable the networks to find answers to gaps in their services.
- A resource to help the networks consider how to become managed clinical networks, as recommended by the guideline.
Finally, we organised an interactive summit to allow the networks to further consider the findings and how best to ensure the delivery of the NICE guideline and quality standards.
Aims and objectives
Our aims and objectives were:
- To ensure every child with palliative care needs, receives high standard, equitable care.
- For us to inform NHS England of an up to date state of children’s palliative care services.
- To enable the children’s palliative care networks to develop solutions to common challenges, highlighted by the guideline.
- To help develop network improvement plans.
- To build connections between high performing areas and those that have yet to implement best practice.
- To support the networks in becoming Managed Clinical Networks (MCN) (a specific point in the guideline) to increase their authority and influence.
Reasons for implementing your project
Together for Short lives is a UK charity for children’s palliative care. There are over 49000 children in the UK, with palliative care needs. We work closely with the children’s palliative care regional networks, who have already made many service improvements in the care delivered to these children and their families. We know there are gaps and inequalities in the services that need to be overcome to meet the NICE guideline (NG61).
To highlight those gaps, either locally or nationally, and possible solutions, we gathered data from the networks, using a questionnaire based on the guideline baseline assessment questions. National benchmarking data is available in the supporting document here.
How did you implement the project
Initially we considered a Freedom of Information (FOI) request to every trust, to ask for the results of their baseline assessment. This proved to be impractical and the extensive data would have been difficult to collect and collate.
We therefore designed a much more concise version of the baseline assessment. We completed the questionnaire with the chair or representative of every children’s palliative care network. The data was collated and analysed to provide a report and benchmark tool, for NHS England’s End of Life team and specialised commissioning team as well as the children’s palliative care networks.
We also developed a resource with advice about becoming a managed clinical network. Network chairs were asked for examples of local solutions to service developments. These were collated into a resource and shared. The networks can add to this resource as they develop more solutions, so they can continue to share service improvements.
Finally we consolidated all this work at a network summit, giving NHS England and the networks the opportunity to discuss the findings and solutions, with special consideration being given to the quality standards.
We found a mixed level of achievement reflecting the wide variation that exists across each of the networks. To achieve a high, consistent, level of care in every region, as suggested in the NICE guideline, we recommended further action to:
- review the provision of end of life care by children’s community services which is available 24-hours a day, 7-days a week, in recognition of the role community services play as the bedrock for all children’s palliative care services;
- review the provision of paediatric palliative care consultants for all regions;
- identify sustainable funding of network coordinators.
It is too early to estimate the outcomes, however, to date:
- NHS England End of Life team, specialised commissioning team and the networks have a common understanding of the problems and are working together to find solutions.
- Through the compendium of local solutions we have been able to share suggestions about new ways of commissioning and funding for roles and new ways of working to meet the NICE guideline recommendations.
- We are working with one regional network who have decided to become a MCN.
Key learning points
- The value of FOI data varies considerably from trust to trust depending on who in the trust, completes the questions.
- NHS staff regarded FOI requests as burdensome and unhelpful but were willing to take part in a survey, with an eagerness to find out their results in relation to others.
- The value of the baseline assessment varies from trust to trust depending on who completes the assessment.
- To gather accurate data, keep the questions clear and unambiguous, and as few in number as possible.
- Gather the data from the person who is most knowledgeable about the issues.
- Be realistic about what you can ask of statutory bodies.