Children are living longer – is healthcare education keeping up?

Medical advances mean more babies, children and young people with life-shortening conditions are surviving infancy, living through childhood and reaching adolescence or adulthood. 

That progress should be celebrated. But as children live longer, often with increasingly complex healthcare needs, has professional education kept pace? 

Mandy Thorpe, Practice Educator at Martin House Children’s Hospice, explains why knowledge of paediatric palliative care can no longer sit solely with hospice specialists, and why healthcare simulation must prepare professionals for situations in which saving the patient is not the right outcome. 

More children are living longer with complex needs 

Research led by the Martin House Research Centre at the University of York found that the number of children and young people in England identified with life-shortening conditions rose by 163%, from 32,975 in 2001/02 to 86,625 in 2017/18. 

Prevalence increased from 26.7 to 66.4 children per 10,000, with more than 95,000 projected to be living with these conditions by 2030. 

Mandy said: “Better diagnosis and recording may explain part of that rise, but advances in medicine and technology are also enabling children to live for longer.” 

The increase has been particularly marked in Yorkshire and the Humber and the North West, while prevalence remains higher in more deprived communities. 

The latest ONS figures also found that infant mortality in England’s most deprived communities was more than twice the rate in the least deprived. 

“Although mortality figures do not directly measure demand for palliative care, they underline the importance of planning services and education around the needs of different communities.” 

Paediatric palliative care cannot remain a niche 

As more children live longer with complex conditions, a wider range of healthcare professionals will become involved in their care. 

“Paediatric palliative care can no longer be treated as knowledge needed only by hospice specialists.” 

Mandy says the professionals attending Martin House courses are skilled and compassionate, but many have not previously had the opportunity to develop their understanding of children’s palliative care. 

“Palliative care is not consistently embedded in undergraduate medical and nursing education. Some professionals can therefore enter the workforce with limited exposure to an area that may later become important to their role.” 

Education should not end when someone qualifies. 

“Workforce development must begin during initial training and continue through induction, professional development and lifelong learning.” 

Not every professional needs to become a specialist 

Doctors, nurses and therapists across many different services may encounter a child with palliative care needs during their careers. 

That does not mean they must all become specialists. 

“They do need enough understanding to recognise when palliative care may help, grasp its principles and know when to seek specialist support.” 

Textbook learning provides an important foundation, but it cannot recreate the pressure and uncertainty of a complex clinical situation. 

“Professionals also need opportunities to apply what they know and understand what good care looks like when a child cannot be cured.” 

Simulation must prepare professionals for every outcome 

Simulation has long been used to help healthcare professionals recognise deterioration, intervene quickly and practice resuscitation. 

Those skills remain essential, but they do not reflect every situation a professional may face. 

“In paediatric palliative care, the best outcome is not always preventing a child from dying. It may be recognising that further invasive treatment will not benefit them, managing symptoms, following an agreed care plan and keeping them comfortable.” 

That requires a different kind of simulation. 

“We also need simulations in which the mannequin dies.” 

Death in a training scenario is not failure 

Mandy says death should not automatically represent failure within healthcare training. 

“It can help professionals explore what excellent care looks like when the focus changes from cure to comfort.” 

Simulation gives teams an opportunity to rehearse rare but significant situations without placing a child or family at risk. 

“It can develop clinical judgement, teamwork and decision-making, while helping participants understand their role and the support around them.” 

Martin House has developed specialist simulation courses covering areas of paediatric palliative care that are not commonly included in traditional training. 

Its new Education Centre will allow the hospice to expand this work and share its experience with more healthcare professionals. 

Education must be part of the response   

Children’s palliative care services need the right facilities, specialist teams and resources to meet increasing demand, but they cannot work in isolation. 

“Education must form part of the national response. As children live longer with increasingly complex conditions, the wider workforce needs the knowledge and confidence to support them.” 

Preparing the workforce is not about turning every professional into a hospice specialist. It is about ensuring that, when they meet a child with palliative care needs, they feel equipped to respond and know where to find further support. 

“Ultimately, as health professionals, we only have one chance to ensure a child or young person has good palliative care at the end of their life.” 

Medicine has advanced. Our education must advance with it. 

Martin House is hosting its inaugural conference dedicated to paediatric palliative care on Tuesday 15 September. Find out more and book tickets for the Martin House Children’s Hospice Conference 2026.