New research published today (25 February 2021) shows that the number of young adults with life-limiting conditions has risen significantly over the last eight years.
The Making Every Young Adult Count: Estimating Current and Future Prevalence of Young People with Life-limiting and Life-threatening conditions in England study, conducted by the University of York and University of Leeds, reveals that the total number of young adults (aged 14-25 years) with life-limiting conditions in England has increased from 27,316 in 2009/10 to 38,261 in 2017/18 – an increase of 40%. This figure includes those diagnosed in both childhood and young adulthood.
Looking just at the number of young people with a life-limiting condition who were diagnosed in childhood, the increase is higher, rising from 16,107 in 2009/10 to 24,773 in 2017/18, an increase of 53%. This research provides valuable insight into the numbers of children who are likely to make the transition to adult services. The data will help services to better plan their support for young people and families in preparing to move on to adult services and will also help commissioners to fund the right services.
That more young adults are living longer is to be celebrated and it is imperative that adequate services are put in place to ensure that these young adults and their families can live life to the full.
The research confirms the pressing need to provide more support for young adults with very complex needs. Together for Short Lives recommends in its Transition Care Pathway ‘Stepping Up’ that transition planning should start at age 14, and address all aspects of planning to meet young people’s choices for a fulfilling adult life, alongside parallel planning for end of life. Together for Short Lives is calling on NHS organisations, local councils and voluntary sector palliative care providers to implement the NHS Long Term plan’s commitment to provide service models for young people that offer person-centred and developmentally appropriate care for young people with mental and physical health needs. And vitally to provide sustainable and equitable funding to enable them to do this.
The Make Every Young Adult Count findings are based on routinely collected hospital and death certificate data from England to provide an update of current numbers and prevalence of young people with a life-limiting condition and estimate future prevalence.
Some of the research’s key findings include:
- The overall number of young people aged 14-25 with a life-limiting condition identified in this dataset from England rose from 27,316 in 2009/10 to 38,261 in 2017/18 – an increase of 40%.
- The numbers of young people with a life-limiting conditions who were diagnosed whilst still in childhood rose from 16,107 in 2009/10 to 24,773 in 2017/18 – an increase of 53%.
- The prevalence of young people with an life-limiting conditions who were diagnosed whilst still in childhood rose from 19.7 per 10,000 in 2009/10 to 30.2 per 10,000 in 2017/18.
- Prevalence was highest for congenital, oncology and neurology conditions. Among young people diagnosed as children, congenital disorders are also the most prevalent.
- Prevalence was significantly higher among females (50.8) compared to males (42.8) per 10,000.
- Prevalence of life-limiting conditions was highest amongst young people of Pakistani origin.
- More young people than expected with a life-limiting condition lived in areas of higher deprivation.
- Overall, most deaths occurred in hospital (55-64%). Home deaths (31%) were more common among young people who died over the age of 25 years. The proportion of hospice deaths was higher in young adults aged 18 or over who were diagnosed as adults (10%) compared to those diagnosed as children (7%).
- Although it is difficult to predict, it is estimated that the national prevalence of life-limiting conditions in young people will increase over the next ten years. The number had increased from 33.5 per 10,000 in 2009/10 to 46.7 per 10,000 in 2017/18 and is estimated to increase to up to 62.2 per 10,000 by 2030.
“The Making Every Young Adult Child Count research is crucial,” says Andy Fletcher CEO of Together for Short Lives. “This new data will be invaluable to help the government, the NHS, children’s and adult palliative care providers to plan and deliver the right care to the growing number of young adults who make the transition from children’s to adult palliative care.”
That more young people are surviving longer into adulthood is good news. But the truth is too many still have a very poor experience of making this important transition. They are too often let down by lack of planning and services that are not always designed around their unique needs.
Andy Fletcher, CEO, Together for Short Lives
“Families and young adults describe this life-changing moment as like falling off a cliff edge – they feel let down and forgotten. Unless policy makers take action now and invest in sustainable and equitable services for these young people which start early planning for transition, young people will continue to miss out on having as fulfilling lives as adults as possible.” added Andy Fletcher.
Young adult Hannah Hodgson added:
“I became unwell at the age of sixteen. This age in some services qualifies me as an adult, and others as still in paediatrics.”
As treatment continues to improve and more young people need to transition towards adult services, huge effort needs to be put into working with young people as they gain more control over their care and outcomes; to empower them but also point towards support they can access.
Hannah Hodgson
Together for Short Lives’ Recommendations
- With the increasing number of young people with life-limiting conditions, services should be to be developed to meet this growing need. Whether this is providing support to young people and their families from the age of 14 to plan for transition or providing age and developmentally appropriate services that can meet the complex needs of this group of young adults. We recommend that the ‘Stepping Up’ Transition Pathway is used as a framework to support this process.
- Services need to be developed to support the specific cultural needs of the population. So with higher prevalence of young people from ethnic minority backgrounds (in particular from Pakistani backgrounds) and those living in more deprived areas, services should take these needs into account.
- In order to improve the availability of data on this population, Together for Short Lives recommends that the planned national data collection in the NHS England All Age Palliative and End of Life Care Programme should include information of young people who will require transition from paediatric to adult services.
- Together for Short Lives calls on national and local governments to use the data to plan and fund the services that are desperately needed by this often-forgotten group of young adults.
Together for Short Lives is grateful to the funders who have generously supported this research and the Improving Transition for Young People Programme, including St James Place and MariaMarina.