Health inequalities - and reaching underserved children and families

Dying well, wherever you are and whatever your background or circumstances, is a fundamental aspect of human dignity. As part of a compassionate, humane society, we need to do everything we can to ensure that people who are facing their last months, weeks and days of life receive the best possible palliative and end of life care. Those who care for them, including their families, others important to them and staff around them, equally deserve this consideration and support.

This page helps ICBs to understand how inequalities affect children and young people with life-limiting and life-threatening conditions – and how to conduct an equality and health inequalities impact assessment when commissioning palliative and end of life care for this population.

NHS England have produced and co-produced several resources focused on ensuring equality in end of life care.

Core20PLUS5

To address inequalities in access to children and young people’s palliative and end of life care, ICBs may wish to take account of NHS England’s Core20PLUS5 approach. This supports the reduction of health inequalities at both national and system level.

The approach defines a target population cohort and identifies ‘5’ focus clinical areas requiring accelerated improvement. The approach has been adapted to apply to children and young people

Core20

The most deprived 20% of the national population are identified by the national Index of multiple deprivation (IMD). The IMD has seven domains with indicators accounting for a wide range of social determinants of health. For children and young people, wider sources of data may also be helpful, including the national child mortality data base and data available on the Fingertips platform.

PLUS

PLUS population groups include:

  • ethnic minority communities
  • inclusion health groups
  • people with a learning disability and autistic people
  • coastal communities with pockets of deprivation hidden amongst relative affluence
  • people with multi-morbidities
  • protected characteristic groups; amongst others

Specific consideration should be taken for the inclusion of young carers, looked after children/care leavers and those in contact with the justice system.

Inclusion groups

Inclusion health groups include:

  • people experiencing homelessness
  • drug and alcohol dependence
  • vulnerable migrants
  • Gypsy, Roma and Traveller communities
  • sex workers
  • people in contact with the justice system
  • victims of modern slavery
  • other socially excluded groups

Inequalities in access to children and young people’s palliative and end of life care

Not all children and young people and their families who could benefit from palliative and end of life care choose to access it. This could be due to a number of factors:

  • services and professionals caring for them may be unaware of what is available
  • services and professionals caring for them may choose not to refer
  • young people and families may choose not to access palliative and end of life care services because they do not feel that they will meet their needs.

This could, in part, be due to misconceptions about what palliative and end of life care services are and what they do. Some may perceive palliative and end of life care as ‘giving up’.

Research is needed to better understand the reasons why some children do not access the palliative and end of life care that is available to them.

The recent National Confidential Enquiry into Patient Outcome and Death (NCEPOD) report The Inbetweeners: A review of the barriers and facilitators in the process of the transition of children and young people with complex chronic health conditions into adult health services found that 19% of young people were identified as having at least one recognised health inequality that impacted on the care that they received. The most cited reasons for impact were:

  • a learning disability
  • a physical disability
  • socioeconomic status
  • English not being a first language
  • being part of an inclusion health group
  • severe mental illness

Inequalities in the prevalence of life-limiting and life-threatening conditions in children and young people

The number of children and young people living with life-limiting or life-threatening conditions is rising, with black, Asian and minority ethnic children and young people living in areas of socioeconomic deprivation being disproportionately affected.

The Make Every Child Count study shows that the prevalence of life-limiting and life-threatening conditions in children and young people varies according to age, sex, ethnic background and deprivation:

  • The prevalence of LLCs was highest in the under 1-year age group at 226.5 per 10,000 in 2017/18.
  • The prevalence of LLCs was significantly higher among boys (72.5 per 10,000 vs girls 60.0 per 10,000 (2017/18)) although there was no difference in the rise in prevalence between sexes over time.
  • Prevalence of LLC are highest amongst children of Pakistani origin (103.9 per 10,000) and lowest among children of Chinese origin (32.0 per 10,000) in 2017/18. This is important in terms of flexibility of service to meet the needs of all children.
  • More children than expected with a LLC lived in areas of higher deprivation (13% most deprived versus 8% in least deprived). The deprivation categories were population weighted therefore you would expect ~10% of children to have a LLC in each category.

ICBs may wish to make sure that the children and young people’s palliative and end of life care services they commission address barriers that children and families from different backgrounds face in accessing them. We recommend that services consistently capture data on protected characteristics.

Guidance on Working with Interpreters has been developed by the Together for Short Lives Diversity Group to support all children’s hospice and palliative and end of life care providers to work with interpreters to meet the needs of families for whom English is not their first language.