Skegness girl, 21, with spina bifida backs WellChild campaign to make treatment transition to adulthood safer

Evie Toombes, 21 – who was born with Spina Bifida requiring spinal surgery – is supporting WellChild in raising awareness of the support available in the charity’s new 8 Principals of Transition guide.

Her own condition – which has left her with ongoing weakness and severe bladder and bowel problems – means she can decline rapidly and so requires constant monitoring and frequent urgent admission to hospital for life-saving treatment.

However, in spite of her health challenges she has continued to pursue her passion for competitive horse-riding and In 2018 won a prestigious national award from the chairity WellChild for her achievements and for mentoring other children with health problems, which was presented by Prince Harry and Meghan Markle.

Ir was a natural transition for Evie to support WellChild’s campaign after it was found families of seriously ill young people report catastrophic failures in health and other services as their children turn 18.

Nearly 70 per cent of families reported inadequate and deficient experiences of transitioning from children’s to adult services as their child approached adulthood.

A survey 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.

The complexity of Evie’s health needs mean she has always received treatment from a number of different consultants which was already a struggle for her family to coordinate her care before she turned 18.

However, when the input from a paediatrician stopped her mother, Caroline Toombes, said it felt like no-one was taking responsibility for her care.

She recalled: “In the summer when Evie was 16 she became very ill needing urgent attention.

"However when I called the children’s ward, as I had done many times before, I was told out of the blue that she had been transferred to adult services and we would have to go to A&E.

"This was a complete shock and not the carefully planned transition over a long period we’d been told to expect.

"Instead of accessing care within minutes of arriving at hospital and in an environment where doctors understood Evie’s needs, she was kept in a public waiting room for hours, doubly incontinent and vomiting, only for doctors, when we eventually were seen, to assume she had an eating disorder.

"By this stage Evie was seriously ill which could so easily have been avoided.

"Since then matters have not improved and we’ve had many close calls, leaving us constantly anxious that on one occasion in the future, Evie will not get the treatment she needs in time.”

Director of Programmes at WellChild, Amy Mitchell, led the development of the 8 Principles for Transition, enlisting expert health professionals. She said: "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, June 14. It is available to download at wellchild.org.