Presentation by North Thames Teenager and Young Adults Cancer Network Coordinating Group Co-Chair Rachael Hough at the London Cancer Children, Teenager and Young Adults Study Day, held on 25 July 2013.

1. TYA cancer care in the
North Thames Network
Rachael Hough
Co-Chair of the North Thames TYA Cancer Network
Coordinating Group
25th July 2013

2. TYA Cancer: Tumour Types
100
0-79 years
%ofallcancersbytissueoforigin
Lymphomas Carcinomas Germ cell tumours
CNS tumours Leukaemia Melanoma
Bone tumour Soft tissue sarcomas Other cancers
0
10
20
30
40
50
60
70
80
90
13-24 years
Tumour % of all cancers
13-24 0-79
Lymphoma 22.1 4.1
Carcinomas 16.7 78.7
Germ cell tumours 14.4 0.9
CNS tumours 14.2 3.2
Leukaemia 10.4 2.5
Melanoma 8.9 3
Bone tumour 6.2 0.2
Soft tissue sarcoma 4.6 1
Other cancers 2.5 6.4

3. TYA Cancer: Inferior Survival
Overview of five-year survival by diagnosis and age
for patients diagnosed in the UK 2001-2005

4. Improvement in 5-Year Survival,
Invasive Cancer, 1975 to 1997, USA
Age at Diagnosis (Years)
250 5 10 15 20 30 35 40 45 50 55 60 65 70 75 80 85
0%
All Age Average = 1.46% / yr
Average
Annual
%
Change
0.5%
1.0%
1.5%
2.0%
1.59%
1.72% 1.72%
1.12%
1.35%
1.60%
1.90%
2.22%
2.38%
1.99%
1.59%
0.91%
Age 85+
0.91%
0.48%
0% -0.27%
0.22%
0.51%
A. Bleyer, SEER data

5. TYA Cancer:
Poor recruitment to clinical trials
65.2
54.6
42.7
29.8
12.3
8.3 7.5 6.7 8.0 7.8 8.5 7.3
0.0
10.0
20.0
30.0
40.0
50.0
60.0
70.0
0-4 5-9 10-14 15-19 20-24 25-29 30-34 35-39 40-44 45-49 50-54 55-59
Proportionofpatientsrecruited
Age at accrual
Proportion of children and young adults entered into
selected trials 2005- 2010, England only

6. Improving survival in UK ALL patients by
collaboration between NCRI Paediatric and Adult
Working Groups and change in national treatment
strategy
ALL2003 (Follow-up to Oct 2011)
EVENT FREE SURVIVAL BY AGE GROUP
0 1 2 3 4 5 6
0
25
50
75
100
PERCENT
TIME IN YEARS
89%
82%
74%
<10
10-15
16+
No.
Patients
No.
Events
Obs./
Exp.
<10 2288 187 0·8
10-15 611 85 1·4
16+ 229 46 2·5
2P < 0·00001
49% EFS at 5
years in 15-17
year olds
74% EFS at 6
years in 16-24
year olds

7. Recruitment to clinical trials increased
Proportion of newly diagnosed ALL patients
entering UKALL2003 and UKALLXII,
January 1st 2006- 31st December 2008
Proportion of newly diagnosed ALL patients entering
ALL97, UKALL2003, UKALLXII
January 1st 1997-December 31st 2006
Courtesy L Fern and J Whelan

8. I feel that UCH do not
adequately cater for
teenagers/young adults with
cancer but I am glad to see
that this is beginning to be
addressed.
(21 year old female)
Even if they don’t talk to
each other – just knowing
that people here are of
the same age and in the
same situation is a
comfort.
(Mum of 17 year old
male)
I really liked the fact that I
was with people who were
my own age and who
looked like me. It made me
feel less self conscious.
(14 year old female)
The care and treatment I
received was fantastic on
the adult ward but I
sometimes found it
alienating and at times
distressing to be the only
young person there.
(20 year old male)
The age range is about right
but sometimes the 13 year olds
get on my nerves like my little
brother! ( 19 year old male)
The nurses get
how to talk to you
here…
( 19 year old male)
I had treatment on the teenage unit and on an
adult ward. The major difference for me was that I
didn’t have anyone to talk to who was my age. That
definitely made being in hospital worse for me.
(24 year old male)
Being with people of a similar age is important to me
0.00%
5.00%
10.00%
15.00%
20.00%
25.00%
30.00%
35.00%
40.00%
45.00%
50.00%
Strongly
disagree
Disagree Neither
disagree nor
agree
Agree Strongly
agree
All
13-19
20-24

9. It’s a good thing to have males and females mixing – it’s
much more like real life and more like the environments
that they mix in like school and university.
(Mum of 19 year old male)
I think it must
be strange for a
girl if they’re the
only one in a
bay of boys. I
don’t know
really…
(18 year old
male)
It doesn’t bother me if
I’m in a bay with boys
and girls – that’s better
than being with a load
of small kids or old
people.
(15 year old girl)
I think it’s more of a
problem for the girls than
the boys to be honest – it
doesn’t bother me at all.
(19 year old male)
It’s more
important for me
to be with people
my own age
(14 year old girl)
Just knowing that people are here and in the same
situation is a comfort – it doesn’t matter what gender
they are.
(Mum of 19 year old male)
Being with people of the same sex is important to me
0.00%
5.00%
10.00%
15.00%
20.00%
25.00%
30.00%
35.00%
40.00%
45.00%
Strongly
disagree
Disagree Neither
disagree nor
agree
Agree Strongly
agree
All
13-19
20-24

10. Being able to stay overnight
is very important – young
people don’t want to ask the
nurses for help with little
things like getting a drink
so we can do it for them if
we’re there.
(Mum of 17 year old male)
I like the fact that my mum or my
sister can stay overnight – I think I’d
be lonely otherwise…
(15 year old girl)
I just like knowing that
there’s someone here for
me all the time. Sometimes
I want to talk at night but
the nurses are busy.
(17 year old female)
Sometimes it’s lonely when
visiting time is over and
your friends or family have
gone. I would have liked it if
my girlfriend could have
stayed with me on the ward.
(22 year old male)
You don’t realise
how lucky you are
until you have to
go somewhere
else.
(Dad of 19 year
old male)
My son doesn’t always want me to stay by the bed – it’s important
that we have our own space. The thing is, he does want me around
though so it’s good to have somewhere to stay so that I can be close
by if he needs me.
(dad of 18 year old male)
It’s much better
when I have
someone staying
with me – I don’t
get so bored.
(14 year old girl)
It is important for me that someone is able to stay overnight
with me if I want/need them to
0.00%
10.00%
20.00%
30.00%
40.00%
50.00%
60.00%
Strongly
disagree
Disagree Neither
disagree nor
agree
Agree Strongly agree
All
13-19
20-24

11. The day room was one of the
most important things about my
experience at the hospital. It
helped me mix with other
people and provided a really
good distraction from the chemo
and effects.
(19 year old male)
We’d be in bed all day if we
didn’t have the dayroom!
(19 year old male)
The dayroom was a
great getaway…
(17 year old female)
It’s really good to have somewhere to go with
your friends or family rather than sitting in
your bed when they come and visit
(15 year old female)
You don’t have to worry
about people staring or
thinking that your child
is strange because
everyone is in a similar
situation – they’re
attached to pumps,
have no hair etc.
(Mum of 17 year old
male)
The activity
co-ordinators are
really important,
especially for the
younger patients.
(19 year old male)
Having access to a day room/social area where I can go with my
visitors or patients of a similar age is important to me
0.00%
10.00%
20.00%
30.00%
40.00%
50.00%
60.00%
70.00%
Strongly
disagree
Disagree Neither
disagree nor
agree
Agree Strongly agree
All
13-19
20-24

12. How do we make change?
National guidance
Improving Outcomes Guidance
(published in August 2005)
NCAT TYA measures
(published in July 2011)

13. Key recommendations from the IOG
• TYACNCG
• Place of care
• All patients aged 16-18 years should be referred to the TYA PTC
• All patients aged 19-24 years should be offered choice between the
TYA PTC or a local designated hospital
• Robust arrangements for planned transition between children and
young people’s services and between young people’s and adult
services.
• Discussion at TYA MDT
• All patients aged 13/16-24 years inclusive should be discussed at
both a site-specific MDT meeting and a TYA MDT meeting.
• The TYA MDT should coordinate treatment, psychosocial care and
peer contact/support for young people wherever they are treated
• BUT: referrals should not delay the start of urgent cancer treatment.

14. North Thames TYA Cancer Network
Total population = 6.7 million
Patients aged 16-24 years
All tumour types
Paediatricians and adult physicians
No funding
Essex
NWL
London
Cancer
London Cancer
Alliance
Mount
Vernon
1
5
6
7
8a
9
8b
10
12
13b
13a
11
14
16
15
17
18
20
19
2
321
22
4
23
24
PTC
POSCU
TYA DH

15. Network TYA Designated NHS Trust(s)
London Cancer ICS
Barking Havering and Redbridge University NHS Trust
Barts Health NHS Trust (for Barts and the Royal London)
Royal Free Hampstead Hospital NHS Trust (Skin Cancer only)
Whittington Health NHS Trust (shared care only)
London Cancer Alliance ICS
(NWL part)
Chelsea & Westminster Hospital NHS Trust (HIV and skin only)
Imperial Healthcare Hospitals NHS Trust
Essex Cancer Network
Southend University Hospital NHS Trust
Colchester Hospital University NHS Trust
Mid Essex Hospitals Trust
Basildon and Thurrock University Hospital NHS Trust
Mount Vernon CN
Mount Vernon Cancer Centre
East & North Hertfordshire NHS Trust (Lister hospital)
TYA designated Trusts

17. TYACNCG Objectives 2013-14
Network Governance
• Implementing robust TYA referral pathways
Patient Experience
• Development of patient information folder to be send to all patients discussed at
the TYA MDT
• Conducting network-wide patient information survey
Education
• Standardisation of nursing education
Survivorship
• Auditing current Late Effects Service for TYA patients
• Development and implementation of action plan for service improvements
Research & Early Diagnosis
• Defining and improving the clinical trials portfolio
• Development of information packs for GPS

18. Thank you