New Shared Learning: Networked approach to implementing NICE NG61 (End of life care for infants, children & young people)

The baseline assessment tool for NG61 was applied to our own organisation (Helen & Douglas House), as well as to partner organisations within Thames Valley Paediatric Palliative Care Network, comprising NHS services and third sector charities.

We identified areas for improvement specific to our own service, as well as those that would be best tackled as a regional network (either by the use of referral pathways or joint working on developing written resources for patients). We were able to demonstrate improved compliance between the assessments at Helen & Douglas House conducted in March 2017 and October 2017 (from 84% to 90%).

We now plan to use our learning to support other organisations in the region to adapt their own internal processes by sharing examples of good practice, such as care plans, symptom assessment tools and referral pathways. Our data has also been submitted to Together for Short Lives, who are mapping a national picture of the baseline assessment outcomes for NG61.


Cochrane Review: Drug management for acute tonic-clonic convulsions including convulsive status epilepticus in children


Tonic-clonic convulsions and convulsive status epilepticus (currently defined as a tonic-clonic convulsion lasting at least 30 minutes) are medical emergencies and require urgent and appropriate anticonvulsant treatment. International consensus is that an anticonvulsant drug should be administered for any tonic-clonic convulsion that has been continuing for at least five minutes. Benzodiazepines (diazepam, lorazepam, midazolam) are traditionally regarded as first-line drugs and phenobarbital, phenytoin and paraldehyde as second-line drugs.
This is an update of a Cochrane Review first published in 2002 and updated in 2008.

Authors’ conclusions

We have not identified any new high-quality evidence on the efficacy or safety of an anticonvulsant in stopping an acute tonic-clonic convulsion that would inform clinical practice. There appears to be a very low risk of adverse events, specifically respiratory depression. Intravenous lorazepam and diazepam appear to be associated with similar rates of seizure cessation and respiratory depression. Although intravenous lorazepam and intravenous diazepam lead to more rapid seizure cessation, the time taken to obtain intravenous access may undermine this effect. In the absence of intravenous access, buccal midazolam or rectal diazepam are therefore acceptable first-line anticonvulsants for the treatment of an acute tonic-clonic convulsion that has lasted at least five minutes. There is no evidence provided by this review to support the use of intranasal midazolam or lorazepam as alternatives to buccal midazolam or rectal diazepam.

Link to full review here

Comparing Alternative Ranibizumab Dosages for Safety and Efficacy in Retinopathy of Prematurity A Randomized Clinical Trial

Premature (2)
Key Points

Question  Can anti–vascular endothelial growth factor (VEGF) therapy in retinopathy of prematurity (ROP) be improved by using ranibizumab given at lower doses than the standard treatment, bevacizumab, thus alleviating systemic safety concerns while effectively treating disease?

Findings  In this randomized clinical trial with 20 patients, both investigated ranibizumab doses were lower than the current standard bevacizumab dose for ROP. Both ranibizumab doses were effective in controlling acute ROP (17 of 18 per protocol treated eyes [94%] with 0.12 mg and 13 of 14 per protocol treated eyes [93%] with 0.20 mg); systemic VEGF levels remained unchanged.

Meaning  Low-dose ranibizumab is effective in treating acute ROP without suppressing plasma VEGF levels.

Link to article here

NICE Briefing: Next-generation sequencing panel for solid tumour cancers in children



  • The technology described in this briefing is a next-generation sequencing (NGS)-based panel, used to sequence genetic mutations in solid tumour cancers in children.
  • The innovative aspects are that it was developed with input from a wide range of experts, so it is highly optimised and tailored specifically to solid tumours in children.
  • The intended place in therapy would be in addition to standard care, or as a replacement to less extensive gene testing, to expand the level of genomic analysis in children with solid tumour cancers.
  • The main points from the evidence summarised in this briefing are from 1 UK analytical validity and diagnostic accuracy study that included a total of 132 samples, in a genomics laboratory, using clinical samples from laboratories worldwide. This showed that the NGS panel detected 94 of 95 (98.9%) well-characterised genetic abnormalities in 33 clinical specimens and 13 cell lines.
  • Key uncertainties around the evidence or technology are that the technology is still in early development, so the evidence base is not fully established. Further evidence generation is planned and in progress.
  • The cost of the NGS panel varies according to sample throughput, but is estimated to be £346 to £651 per patient (excluding VAT). The resource impact would be initially cost-incurring, but using the NGS panel could lead to the development of targeted therapies using biological agents or targeted drugs for cancer in children.
    Link to full briefing here

A systematic evidence synthesis of interventions to engage children and young people in consultations about their long-term conditions


Image: Pixabay


Background: Children and young people with long-term conditions are not always provided with opportunities to engage fully in consultations. This systematic review examined the effectiveness or worth of methods used to engage children and young people with long-term conditions in their consultations. Conclusions: This review has demonstrated that interventions targeted at children and young people with long-term conditions can improve their levels of engagement in consultations. There is a need for more systematic development and robust evaluation of interventions to improve children’s active participation in consultations.

Link to article here

Translational Research—Stressful and Overwhelming Challenges of Children’s Illness for Parents and Families

Background: When children become ill and are hospitalized, this creates stress in children, their parents, and families and creates multiple challenges – how to help children overcome illness and become well again, how to survive acute life-threatening illness, how to manage uncertainty about the child’s prognosis, how to help children meet their developmental demands when challenged by illness and hospitalization, how to provide caregiving for children in hospital and at home, how to live with and provide caregiving to manage chronic conditions how to achieve a new normal. Each of these challenges is inherently overwhelming and stressful for parents and families. 

The 25 articles in this issue of the Journal of Pediatric Nursing present new evidence and intervention strategies to address the challenges faced by children, their parents and families across the three broad categories: (a) health of adolescents and school-age children; (b) parenting stress and caregiving; and (c) interventions for improving the quality of care for hospitalized children.

Link to article here

MHF briefing: The Mental health of young women and girls: how to prevent a growing crisis

MHF briefing girls

The Mental Health Foundation has published While your back was turned: how mental health policymakers stopped paying attention to the specific needs of women and girls.   This paper aims to improve the understanding of decision makers of how to prevent mental health problems in young women.  It identifies pressure points and social determinants of mental health and wellbeing in young women and girls, to support the development of tailored mental health guidance aimed at preventing mental health problems for those at highest risk.