The family of Nya Chung (20) from Haringey is supporting a new call from national children’s charity, WellChild, for change to the way seriously ill young people are treated as they approach adulthood. According to a survey by WellChild, families of seriously ill young people report catastrophic failures in health and other services as their children turn 18. Nearly 70 percent of families reported inadequate and deficient experiences of transitioning from children’s to adult services as their child approached adulthood.

As it is widely recognised that people have different experiences of transition depending on where in the UK they live, WellChild sought to hear directly from young people with complex health needs and their parents or carers.

The responses revealed that this vulnerable and commonly overlooked group of young people were rarely consulted and often left with little or no information about ongoing health support or who to turn to for help.

Nearly 60 per cent felt the planning process for transition started too late, leaving more than half of young people completely unprepared and others reporting there was no formal or structured process in place.

Responses included:

· Nearly 70 per cent of respondents described their overall experience of transition as poor.
· Over half of young people didn’t feel prepared at all.
· Nearly 70 per cent of young people weren’t given a chance to meet the adult teams to which they were transitioning
· More than 70 per cent didn’t have a key worker or even know who to contact about their health after moving to adult services

Of those who recounted negative experiences of a young person’s transition, it was common that nothing in the process had gone well with regular reports of poor communication and disappointment and exhaustion caused by the process. For others there was simply no process at all, leaving many young people post transition without specialist support from adult services. Respondents commented:

“We really had no planning, just thrown into a jungle where everything conflicts and doubles.”

“All services just abandoned him.”

Among these is Nya Chung from North Haringey who is now aged 20. She has cerebral palsy, hydrocephalus, epilepsy and is registered blind. Her transition to adult services started when she was approaching 18 but two years on, her mother, Denise, is still battling with administrative barriers. This includes securing Power of Attorney for Nya, who is now classed as an adult but unable to manage her own affairs or communicate. Fortunately Denise had the foresight to research which hospitals were able to manage Nya’s medical care and was able to successfully challenge when Nya was originally directed to her local hospital which didn’t have the right facilities to care for her. Overall the family has been financially, practically and emotionally by the manner in which the transition took place, all of which Denise believes could have been avoided had there been more information, better communication and an earlier start to planning. Denise said:

“There’s just not enough information or support when your child is transitioning to adult services and we’re still not sorted. It was all so last minute and wouldn’t have been such a struggle if the process had started earlier.”

Responding to this devastating picture, WellChild enlisted expert health professionals, including WellChild nurses who specialise in transition, to develop guidance on how to improve planning and services for children with complex needs as they move from adolescence into adulthood and beyond.

This free resource, WellChild’s 8 Principles for Transition [insert link], is designed to equip those professionals across health, social care and education with a responsibility to these young people to help them work together to deliver the right support, in the right place and at the right time.

Director of Programmes at WellChild, Amy Mitchell, led the development of the 8 Principles for Transition. She said:

“With improvements in medical treatment and technology, more children and young people with complex health needs are surviving into adulthood and looking forward to futures that would previously have been impossible.

We are deeply concerned to hear from so many families who’ve been left in the dark and often felt abandoned as they try to navigate their way into support for their children as adults.

It is vital that the right support and services are in place to allow this complex, vulnerable and growing group to thrive as adults as they move from children’s services.”

WellChild’s 8 Principles for Transition will be launched during this year’s Annual National Transition Conference on Wednesday 14th June. The free resource is available to download here. WellChild is keen to continue to improve the support and advice it provides to professionals and families on this issue and would welcome feedback on the resource.

WellChild provides essential and practical support to ensure that the increasing number of seriously ill children and young people in the UK have the best chance to thrive – properly supported at home with their families.

The charity, which has The Duke of Sussex as its Patron, provides a national network of children’s nurses, who work with families to ensure that children with complex care needs can leave hospital and return home and, through its Helping Hands scheme, WellChild enlists the support of volunteers to tackle practical projects in the homes of children with serious health needs. Through its family training and support services, the charity ensures parents and carers are properly supported and empowered to care for their children safely at home. During the COVID-19 crisis, WellChild set up a crisis response service to source and distribute Personal Protective Equipment (PPE) to shielding families so that they can let external carers back into their home.