Influencing, informing and lobbying for better care

Campaigning for Children's Hospices

We are heavily involved in campaigning for children's hospices throughouth the UK and also mentor a childrens hospice in the USA. Our latest research campaign looked at the effect that having a child with a life limiting illness has on relationships.

Seventeen children's hospices from across England and Scotland took part in the research, which was conducted by Ashley Mitchell of Bournemouth University in partnership with Julia's House. 


The national study found that 75% of couples who suffered a relationship break had no access to frequent respite care at the time.

Yet 64% of divorced or separated parents cited the strain of caring round-the-clock for their life-limited child as either the main, or a contributory factor in their relationship breakdown.

Caring for life-limited and life-threatened children puts pressure on relationships and, unsupported, some parents relationships do not survive repeated emotional and physical strain. The unrelenting, exhausting cycle of care means couples can end up leading separate lives.

Most parents in this study rated short breaks provided by children's hospices as having a direct, positive effect on their relationship with a partner, giving them rare time together as a couple.

What the study revealed
  • 60% received no short breaks from Social Care

  • 74% of parents rated short breaks as having a positive impact on their relationship

  • 89% of parents get support from their families, often due to the complex needs of their child

  • 43% of couples who had not split up led separate lives which impacted on their relationship, due to the demands of caring for a life-limited child


Next Steps 

The report is calling for an urgent review of short break hospice care by the Government as a preventative measure to reduce parental break-up and the economic fallout from family disintegration. 


A further study will analyse the economic benefits of short breaks provided by children's hospices by measuring increased family wellbeing against the cost savings to Social Care and the NHS mental health budget.

The survey has the backing of Oliver Letwin MP who has spoken out for improved palliative care for children. 

Pictures used in relation to the study are for illustrative purposes only. The families featured are supported by Julia's House but were not part of this study.

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The hospice became invaluable, not only to our daughter, but also to our relationship. Respite played a vital part in keeping our family from falling apart at the seams.

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