Commissioning children’s palliative care

Commissioning children’s palliative care in England: 2017 edition | Together for Short Lives 

This report summarises responses to a Freedom of Information request sent to every CCG and upper-tier local authority in England, asking how they plan care and support for children who need palliative care and their families, and which services they commission for them.

The report found that:

  • Children’s palliative care commissioning in England is patchy and inconsistent
  • The government’s end of life care choice commitment is not being fulfilled in almost half of local areas in England
  • Most CCGs have not implemented the new clinical guidance for children who need palliative care
  • Even though many seriously ill children need care 24 hours a day, seven days a week, commissioners are failing to plan and fund this support
  • Many local authorities are failing to commission short breaks for children who  need palliative care, despite being legally obliged to do so
  • There is a postcode lottery of bereavement care across England for parents whose child has died
  • CCGs and local authorities are failing to fund voluntary sector children’s palliative care organisations – including children’s hospices
  • Too many areas still do not commission age and developmentally appropriate services for young people with life-limiting and life-threatening conditions
  • Despite significant challenges across England, there are still some examples of commissioners reporting a broad range of children’s palliative care commissioning.

The report proposes a number of recommendations in response to these findings.

Full report:  Commissioning children’s palliative care in EnglandTogether for Short Lives’ report on children’s palliative care services commissioned by NHS clinical commissioning groups (CCGs) and local authorities in England.

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Seizure management in children requiring palliative care

Controlling seizures in children approaching death can be difficult, and there is a limited evidence base to guide best practice | BMJ Supportive & Palliative Care

Objectives: We compared current practice against the guidance for seizure management produced by the Association of Paediatric Palliative Medicine (APPM).

Methods: Retrospective case note review of episodes of challenging seizure management in children receiving end-of-life care over a 10-year period (2006–2015) in the south-west region of England.

Results: We reviewed 19 admissions, in 18 individuals. Six (33%) had a malignancy, nine (50%) had a progressive neurodegenerative condition and three (17%) had a static neurological condition with associated epilepsy. Thirteen (72%) died in their local hospice, four (22%) at home, and one (6%) in hospital. Seventeen of 19 episodes involved the use of subcutaneous or intravenous midazolam infusion, for a mean of 11 days (range 3–27). There was a wide range of starting doses of midazolam, and 9/17 (53%) received final doses in excess of current dose recommendations. Six individuals received subcutaneous phenobarbital infusions, with four of these (67%) receiving final doses in excess of current dose recommendations. Plans for adjustments of infusion rates, maximal doses or alternative approaches should treatment fail were inconsistent or absent. In 16/18 (88%) cases seizures were successfully controlled prior to the day of the child’s death. Staff found the experience of managing seizures at end of life challenging and stressful.

Conclusions: Pharmacological approaches to seizure management in end-of-life care are variable, often exceeding APPM dose recommendations. Despite this, safe and effective seizure control was possible in all settings.

Full reference: Harris, N. et al. (2017) Seizure management in children requiring palliative care: a review of current practice. BMJ Supportive & Palliative Care. Published Online First: 7th July 2017

Facilitators & barriers of palliative care in the neonatal unit

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Kilcullen, M. & Ireland, S. Palliative care in the neonatal unit: neonatal nursing staff perceptions of facilitators and barriers in a regional tertiary nursery. BMC Palliative Care | Published online: 11 May 2017

Background: Neonatology has made significant advances in the last 30 years. Despite the advances in treatments, not all neonates survive and a palliative care model is required within the neonatal context. Previous research has focused on the barriers of palliative care provision. A holistic approach to enhancing palliative care provision should include identifying both facilitators and barriers. A strengths-based approach would allow barriers to be addressed while also enhancing facilitators. The current study qualitatively explored perceptions of neonatal nurses about facilitators and barriers to delivery of palliative care and also the impact of the regional location of the unit.

Conclusions: This study identified and explored facilitators and barriers in the delivery of quality palliative care for neonates in a regional tertiary setting. Themes identified suggested that a strengths-approach, which engages and amplifies facilitating factors while identified barriers are addressed or minimized, would be successful in supporting quality palliative care provision in the neonatal care setting. Study findings will be used to inform clinical education and practice.

Read the full article here

Decision making for children with life-limiting conditions and life-threatening illnesses

Bluebond-Langner, M. et al. (2017) Archives of Disease in Childhood. 102(5) pp. 468-471

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The relationship between parents and clinician is critical to the care and treatment of children with life-limiting conditions (LLCs) and life-threatening illnesses (LTIs). This relationship is built and maintained largely in consultations. In this article we lay out factors that bear on the success of clinical consultations and the maintenance of the essential clinician–parent relationship at progression or deterioration of LLCs or LTIs.

We suggest an approach to engaging parents in conversations about care and treatment that recognises and appreciates the dilemmas which clinicians and parents face and in so doing provides a way for everyone to live with the decisions that are made. A close analysis of a consultation at progression and excerpts of encounters among parents, clinician and researcher are used to illustrate our approach to research, analysis and development of recommendations for clinical practice.

Read the full article here

The experience of providing end of life care at a children’s hospice

McConnell, T. & Porter, S. BMC Palliative Care. Published online: 13 February 2017

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Background: More attention is being paid to the wellbeing of staff working in stressful situations. However, little is known about staff experience of providing end-of-life care to children within a hospice setting. This study aims to explore the experiences of care team staff who provide end-of-life care within a children’s hospice.

Conclusions: Service and policy initiatives should encourage open, informal peer/organisational support among the wider children’s palliative care sector. Further research should focus on paediatric palliative care education, particularly in relation to symptom management and communication at end-of-life, harnessing the expertise and breadth of knowledge that could be shared between children’s hospices and hospital settings.

Read the full article here

End of life care for infants, children and young people

NICE has published new NICE guidance: End of life care for infants, children and young people with life-limiting conditions: planning and management (NG61).

This guideline covers the planning and management of end of life and palliative care in for infants, children and young people (aged 0–17 years) with life-limiting conditions. It aims to involve children, young people and their families in decisions about their care, and improve the support that is available to them throughout their lives.

Additional link: NICE news report

I am Whole: A report investigating the stigma faced by young people experiencing mental health difficulties

YMCA | Published online: October 2016

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Image source: YMCA

The purpose of this research was to examine the stigma faced by young people experiencing mental health difficulties.

Growing up can be a positive time for many. However, there are hundreds of thousands of young people across England and Wales for whom the experience is very different. Mental health difficulties among children and young people are common and can be both persistent and damaging.

However, the challenges that young people face are not limited to the symptoms mental health difficulties; many must also take on the day-to-day stigma that too often goes with this.

By giving young people the platform to share their views and stories, I AM WHOLE seeks to go beyond the headline statistic ‘one in 10 young people experience mental health difficulties’ that so often dominates the discourse.

Instead, this research seeks to get under the surface and understand the real experiences of those with mental health difficulties. This is done by examining the prevalence of this stigma, who is experiencing it and how they are doing so, the impact of this stigma, and the potential solutions that the young people themselves have identified.

Read the summary here

Read the full report here