This presentation was given by Maria McGill of CHAS (Children's Hospice Association Scotland) to delegates at the APM Scottish Conference 2015 which was held on 10th September at BT Murrayfield Stadium in Edinburgh.

1. 1
Delivering the project vision:
in a world of ambiguity
Maria McGill, Chief Executive
@MariaCEOCHAS
Vision
Same
Established
adults
Teenagers
better
Expansion
Bigger
More
Providing
More-children
Similar
Expanding
Leading
Young
What will CHAS be like in five years –
response from parents
Vision
Children and young
people in Scotland will
have access to palliative
care when and where
they need it

2. 2
Projects
 Developing the CHAS Plan
 Electronic record system
 New nursing structure
 National Funding Agreement - CoSLA
 Service review
 Research projects
 Upper age limit – ‘Transition Project’
What are transitions?
On-going process of moving from one context and set of interpersonal
relationships to another

3. 3
Why an upper age limit?
 Views of young people using CHAS services
 CHAS Plan 2011 – 2016
 Regulation
 Evidence
 Increasing number of young people
supported by CHAS
 Age appropriate services and facilities
Age profile in CHAS
Year Total CYP supported
by CHAS
CYP aged 18-20 CYP aged 21+
2012 292 32 34
2013 305 33 42
2014 378 31 43
2015 372 31 43
National Age Profile
 Numbers of children and young people living with these
conditions is increasing
 Prevalence had increased in the 16-18 age group
from17.2 to 29.9 per 10,000 population between 2000
and 2010
 55, 721 young adults aged 18-40 living with a life-limiting
or life-threatening condition in England in 2009/10
 Over the ten years of data the prevalence had increased
from 26 – 34.6 per 10,000 population
 In the 18-25 age groups there were 12,827 individuals
living with a LLC in England in 2009/10
Fraser L, et al (2011). Life-limiting and life-threatening conditions in children and young people in the United
Kingdom; national and regional prevalence in relation to socioeconomic status and ethnicity

4. 4
 2013 – Transition Policy agreed
 2014 – Transition Team in place
 2015 - Research outcomes
 2017 – Upper age limit in place
Transition
PaulHampton
Transition Policy
The Creation
 Short life working group
 External facilitator
 Evidence review
 Stakeholder views
 Board of Directors
Transition Policy
Key points
 Support and empower young people through transition
into adult services
 Start to enter into a formal transition process when a
young person is 18
 Young people currently over the age of 21 will be offered
supportive transitions to other services by 2017
 Transition plans will be person-centered and encompass
hopes, wishes and goals

5. 5
Transition Policy - Implementation
 Communication
 Funding application
 Transition Team
 Partnerships
 Person-centred approach
 Research project
 Evidence gathering
Transition Policy
Communication
 Young people and families first
 Letter and individualised support
 Dedicated helpline
 Drop-in clinics
 Staff
 Stakeholders
 Media
Transition Policy
Family Responses
“I’m really shocked and feel as if I’ve had the rug pulled from under my feet. An
adult hospice won’t be appropriate. At least it is not happening next week. It
gives be time to get my head around it all”
“Feeling very disappointed after all these years, parents were not consulted.
There are no other services out there and I thought a young adult unit would have
been built.
“Brought a tear to my eye, it is her last link to her childhood. I would not be happy
sending her to an adult hospice, but appreciate that this is what CHAS had to do.
I knew it was coming”.
“What we need to remember is that everyone is doing their best for us…schools
can be 16”.
“….will be thirty by 2016 and if he is still here he will be celebrating this. It will be
worse for young people who understand. The lassies are trained for paediatrics”.

6. 6
Transition Policy
Media response
Scottish Parliament

7. 7
Research

8. 8
Transition Team
Outcomes
 Young people with life-shortening conditions will
have increased opportunities for autonomy
 Young people with life-shortening conditions
have improved access to age appropriate care
services in their community
 Families supporting young people with life-
shortening conditions are better able to cope
with their caring role as they move beyond
CHAS
Progress so far
 All young people already allocated a transition
worker
 Early successes
 Mark aged 23 in supported accommodation
 James aged 23 - Parents leaving home
 John aged 24 - Self directed transition – taking
charge

9. 9
Reflections
 Clarity of purpose
 Involve the right people
 Commitment
 Process
 Communication
 Leadership
 Relentless perseverance