Children’s transition to adult services
(CTAS)
Carl Marsh
29 October 2014
1
Our purpose
To carry out a themed review to better understand the experiences of
young people with complex physical health needs during the transition
to adult services.
“From the pond, you are picked up and put in the sea.”
2
CTAS programme milestones
June 2013 Advisory
group
established
June-July information
received from
CCGs and
sample
agreed
June 2013 Training and work
with inspectors to
develop
methodology and
tools
July Tools
piloted
August –
December CCG visits and
inspections and
focus groups
May 2014 ‘From the
pond into the
sea’ report
published
DecemberFebruary Analysis and
report
3
Our approach
• We held focus groups in five areas around the country
• We visited 19 CCG areas where young people meeting our criteria
were identified
• We visited young people at 23 services registered with us
4
Our approach
• We spoke to 180 young people, and/or their parents, between the
ages of 14 and 25 with complex physical health needs
• We spoke to more than 500 staff who were providing care, were
managers or commissioners
• We used case tracking to look at the transition process for 199
young people
5
A mum of a 20-year-old with complex
health needs told us:
“I could cry, even now, at the frustration of it all. No one health
department seemed to talk to the other and the same is true today. I
have to go to one place for hearing problems, another for sight... and
as for repetition, I have lost count of the number of forms I have had
to fill in time and time again... It is like they deliberately try to make it
difficult to get anything. I was not told we had any choices in what was
going to be given to my daughter. Should we have been?...Why do I
have to fight for anything to get done?”
6
The National Network of Parent Carer
Forums
In August 2013 the NNPCF published its document ‘What Good
Integrated Care Looks Like in Transition’.
We worked with the NNPCF and included the experience and outcome
measures from their report, as a framework on which to report on our
findings.
7
Findings
• Only 50% of young people and their parents said they had received
support from a lead professional during the process leading up to
transition to adult services
• 80% of the pre-transition case notes reviewed (ages 14 to 18) had no
transition plans for health at all
• Only 54% of young people preparing for transition and their families
felt they had been involved as much as they wanted to be
• 35% of young people who had transitioned in the last 18 months and
their parents said they had not received all the equipment they
needed once they had moved to adult services
• Staff that we spoke to from both adult and children’s services had
concerns about the support they were able to provide to young people
during the planning for transition
8
Where transition planning worked well
We found that examples of good transition planning were often in
specialist services, e.g. teams specialising in cystic fibrosis, epilepsy,
and cardiac services. These services had some common characteristics:
• The staff were consistent, and knew about the conditions and the
young person’s history
• They provided adolescent clinics (adolescence is ages 10 to 19)
• There was good communication with young people, their parents, and
each other
• They provided good information about what to expect
9
“....our daughter ended up on the adult ICU but they did not want her
because in their eyes she wasn’t an adult, paediatric services would not
take her because she was over age 16. They were arguing about who
would take her for two weeks while we were in the situation of having a
young child who was seriously ill. It was just dreadful. It was the worst
experience of our lives.”
10
Four key messages:
Changes that need to happen to improve the experience of transition
for young people and their families:
1. Commissioners must listen to and learn from young people and their
families
2. Existing good practice guidance must be followed to ensure young
people are properly supported through transition
3. GPs should be more involved, at an earlier stage, in planning for
transition
4. Adolescence/young adulthood should be recognised across the
health service as an important developmental phase
11
Thanks to the External Advisory
Committee
Standing Commission
on Carers
12