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Investing in primary care as the bridge for transitional care
  1. Finella Craig1,
  2. C Dilini Rajapakse1,
  3. Katrina McNamara2,
  4. Neil Williamson3
  1. 1Great Ormond Street Hospital for Children NHS Trust, London, UK
  2. 2ACT, Bristol, UK
  3. 3Richard House Children's Hospice, London, UK
  1. Correspondence to Dr Finella Craig, Great Ormond Street Hospital for Children NHS Trust, Great Ormond Street, London WC1N 3JH, UK; craigf{at}

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Transition to adult services of young people with palliative care needs is the crisis riding the wave of advances in paediatric medicine. The review by Doug et al1 has highlighted the extent of the crises we are facing, with a lack of standardised transition programmes, a poor evidence base to transition guidelines and insufficient outcome data to evaluate the different models. How, in palliative care, have we found ourselves in this position, with a long-anticipated patient population that has no clear destination and little means of getting there?

One of the difficulties must stem from the broad scope of paediatric palliative care, where early referral in the course of a life-threatening or life-limiting condition is the norm.2 Consequently, those transitioning to adult services encompass a diversity of diagnoses, disease groups and disease trajectories. One of the dilemmas facing paediatricians is not “should I transition my young adult patients” but “how and where do I transition them to”. It is no surprise that published models of good practice, although limited, were mainly identified for condition-specific transition programmes, notably cystic fibrosis, cancer and congenital heart disease (CHD). Here, a single disease group, managed by disease-specific specialists in paediatrics, has a clearly identifiable disease-specific service in adult medicine. Of course, ‘palliative care’ also has an equivalent, clearly identified and developed specialty in adult services, so …

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