College welcomes updated NICE Quality Standard on Transition from children’s to adults’ services

The Royal College of Physicians of Edinburgh (“ the College”) is welcoming the recent publication by NICE of its updated Quality Standard 140  on transition from children’s to adults’ services. The College is currently hosting a working group to address the issues raised in these updated NICE guidelines taking the care of young adults with complex cerebral palsy as an exemplar condition and taking  account of the existing Think Transition report and the report of Cerebral Palsy Scotland as additional evidence based resources. 

Professor Andrew Elder, President of the Royal College of Physicians of Edinburgh, said:

The College welcomes NICE’s updated Quality Standard on transition from children’s to adults’ services and was pleased to be able to contribute towards its development in the consultation process.

As we have said before, the transition from paediatric to adult services for patients with complex needs is an important area and one that requires careful consideration, planning and - most importantly - communication, not just between professionals, patients and families, but also between different professional groups and specialties.

Through our own working group we plan to add further to the debate on how to best support young people with chronic conditions as they transition to adult services.

Dr Una MacFadyen, College Fellow, current clinical lead for the NSS CEN network and retired consultant general paediatrician, said:

Although the guideline is based on the NHS structure in England its evidence, references and  principles apply in any country where young people with chronic conditions and disabilities are moving from children’s to adult services for health and social care. The survival into adulthood of increasing numbers of young people with complex conditions that have previously been confined to paediatric care and limited life expectancy raises the need for a change of attitude and care provision.

 There are common factors involved in the care of any individual with multiple comorbidities including involvement of multiple specialties. The additional demands of puberty, adolescent brain development, transfer of legal authority from parents to the young adult, transition from school to college or university and adult independence create challenges that justify the resources for effective coordination by an identified person who is known to and trusted by the young person and their parents/carers. 

Although the guideline specifies the age to start the transition process as 13-14 years when paediatricians lead the medical care, the update highlights evidence for identified actions that extend into adult services up to age 25. An important identified additional consideration is the need to consider the young person’s developmental stage and cognitive abilities as a reason to avoid fixed age limits for each step in the individual’s transition. The quality standards advise to confirm improvements including evidence that the young person’s communication needs are identified and met, that they and their parents/carers are included in planning and implementation of the steps to transition, contact is ensured with all relevant specialists and attendance at adult follow up clinics is confirmed. 

The reliance on accessible and accurate health records both as a summary of the young person’s health details and as data held by Health and social care organisations is emphasised for each standard and update. The updated guideline suggests that rehabilitation medicine may be the appropriate lead specialty in providing for the health care of young adults with complex medical conditions in partnership with GPs in Primary Care. In Scotland there are limited numbers of specialists in rehabilitation medicine in post and so each health board must consider how this role can be filled.