Networked approach to implementing NG61 (End of life care for infants, children & young people)

As a specialist provider of palliative care for children, our service scored 100% of the recommendations in NG61 as relevant to our practice. We established, on our initial assessment, that we were 84% compliant with the recommendations.

As a charitably funded organisation with minimal statutory contributions, we needed a financially efficient solution to make up the shortfall. We acknowledged that we were likely to be able to work with local statutory services and with other third sector organisations within our regions network to address some of the unmet recommendations. A discussion was held at a meeting of the Thames Valley Paediatric Palliative Care Network, and our partners also agreed to undertake baseline assessment.

Prior to the meeting mentioned above, numerous small local providers of paediatric palliative care services were feeling somewhat overwhelmed by the scope of the guidance. There had been some anxiety about how to undergo baseline assessment, which we tried to allay through the open discussion of our experience at Helen & Douglas House. We acknowledged that within our network, there were numerous statutory teams (acute sector & community) for whom paediatric palliative care was only a part of their workload.

There were also numerous charities whose charitable objectives offered only specific components of the package of services needed to support children and their families at the end of life (including short break respite, family support, and domiciliary care). It became clear that by working more closely as a network, as specifically recommended in NG61, we could dovetail existing services, reduce any duplication and seek to fill gaps collaboratively.

Within my own organisation, the areas where recommendations were not yet met were analysed and prioritised as ‘red’, ‘amber’ or ‘green’ depending on the strength of the recommendations. This was done by comparing the verbs chosen by NICE in the phrasing of the different areas of guidance.

The ‘red’ unmet recommendations were given precedence and were allocated to individual teams within the service.

Action plans were developed, key examples include:

• Having a named specialist to lead care – this is now formally agreed between involved services. In our case, it usually involved actively deciding at which point it is in the patient’s interest for palliative care to be the lead service.
• Documentation of pain assessment – we have developed a new symptom scoring sheet, allowing hour by hour assessment on a red, amber and green system. Validated pain scales can be used alongside this and mapped on to our sheet, if children are already used to using something specific.
• Clear documentation of each patient’s baseline – new care nursing plans are in use, allowing much more detailed recording of the child’s usual baseline observations
• Documentation of past clinical events - critical index sheets have been added to notes
• Having a specialist pharmacist as a member of the MDT - an experienced pharmacist was appointed in summer 2017. She is based at the children’s hospital and visits once a week.

In addition to the changes described above, there were areas where joint working was critical to successfully meeting recommendations, for example:

• Rapid transfer processes for children wishing to receive end of life care outside of a hospital- work has been undertaken with both PICU and perinatal services to facilitate access to palliative care and rapid discharge support. There were also opportunities identified for the production of joint resources. This applies to areas of guidance where written resources are recommended to support other methods for information sharing.

This applies to ‘organ donation’ and ‘care options’. Providing written information on paediatric organ donation can be best be achieved by using the leaflets provided by NHS Blood and Transplant, rather than by reinventing a new resource. Written resources that deal with local care options could similarly be produced within the network and shared between organisations.)

Through a combination of internal processes, joint working and shared resources, our own organisation has now achieved 90% compliance with NG61. Work continues to produce shared written resources within our network. We also continue to support other partner organisations in meeting areas of need identified by NG61.

A special meeting of the Thames Valley Paediatric Palliative Care Network in March 2018 will be dedicated to a progress review across all services in the region. We have also contributed data to the national assessment of regional networks undertaken by the national charity 'Together for Short Lives', examining regional variation in compliance with NG61.

Whilst Thames Valley benchmarks relatively well, compared to other regions, there are still clear areas for improvement through enhanced joint working. A national meeting is scheduled in early February to support regional networks in understanding the associated quality standards (QS160). Our own organisation has already adapted our in-house audit program to capture related activity.

With an area of guidance as broad as NG61, no single organisation is likely to be able to offer all parts of the recommended services in isolation. Managed clinical networks will allow for cost effective solutions to gaps in provision.

This involves cooperation between professionals and can take a while to achieve. It would have helped in our case, if we had imposed a time scale on all the partner organisation within the regional network, to complete baseline assessment.

This would have saved time and resources, by highlighting areas for collaboration sooner. In our experience, the thing to avoid is the assumption that an individual service can be ‘all things to all people’ in isolation. In paediatric palliative care, we are always most successful when we employ a networked approach and avoid retreating into silos.