Leeds LTFU: The Glaser/Dutton effect Dan Stark, Michelle Kwok-Williams, Adam Glaser Heather Berry, Naseem Sarwar Jennifer Dutton - Patient Services & MDT co-ordinator Presentation from an event held in London on Wednesday 9 October with the Teenage and Young Adult (TYA) Centre Champions and our Clinical Leads to share learning, good practice examples, the successes, challenges and barriers to implementing: Treatment summaries End of treatment care plans Increased self-management for TYAs after cancer treatment The output from the meeting will be to define what support NHS IQ can provide locally to assist TYA teams in order to make progress with their implementation plans.

1. Leeds LTFU: The Glaser/Dutton
effect
Dan Stark, Michelle Kwok-Williams, Adam
GlaserMDs
Heather Berry, Naseem Sarwar - CNSs
Jennifer Dutton -
Patient Services & MDT coordinator

2. Where we were
• Date – 19??2005
• > 900 patients
– Paed-cardiacendocrinefertility
collaboration
– Excellent nurse
specialist
Dutton, Glaser et al 2011

3. Pressures
• Waiting lists
– Patient lobbies
– Re-referrals
– DNA rates
• Morbidity unmet
– Re-referrals, sad stories

4. Summaries

5. Needs assessments

6. Care plans
• Derived from a risks checklist based upon
disease & treatment
• Dictated by clinician into each letter, based
upon earlier letters

7. Referrals
• Paediatric survivors

8. Development Team
• Adam Glaser
• Yorkshire Cancer Network
– Geraint Hughes, Carol Ferguson, Sean Duffy
• Leeds Teaching Hospitals NHS Trust
– Jennifer Dutton (Patient Services & MDT co-ordinator), Shirley Siner (Paediatric
Administrator), Elizabeth Brown & Barbara Hills (Secretaries)
– Heather Berry (CNS), Naseem Sarwar (CNS), Bev Horne (CNS- e platform
development)
– James Tatersall (Renal Physician/I.T. advisor), Rob Murray (Endocrinologist)
– Jo Cannings & Heather Cooper-Waite (Specialist Doctors, Paediatric Oncology),
Michelle Kwok-Williams (Clinical Oncologist), Dan Stark (Medical Oncologist), Adam
Glaser (Paediatric Oncologist)
– Angie Craig, David Fox – Adult Oncology service managers

9. TYA service appointments- IOG 2006
• TYA service - Dan, Michelle,
Karen (Dyker), David (Bowen),
Rod (Johnson), Simone
(Wilkins), Bob (Phillips)
• Relationships
– Shared pressures
– Patients and professionals
– Managers/Nurses/Doctors
• Nursing time
• Admin time
• Treatment summaries
– Regional TYA structures
• Network group, service design

10. Pathways

11. Risk stratification- Dutton et al 2011

12. Nurse-led and telephone clinics

13. Health promotion
• Structured
– Cardiovascular- exercise, weight, tobacco
– Alcohol
– Sun
– Contraception
– Vaccination (Splenectomy)

14. Letter templates
• Standard structure
– Summary
– Specific interaction that day
• Patient copies and patient actions
– invitation to enquire back to us
• GP copies and actions
• Care plan
– Write to the patient, copy the GP (or Vice –Versa)

15. Patient satisfaction with transition (Clic-Sargent)
The staff I saw at the clinic
- used medical terms that I didn’t understand (scored 1–5)
- did their best to keep me from worrying (scored 5 – 1)
- would have been irritated if I’d asked too many questions (scored 1–5)

16. Now
• Combined medical input
• Nurse-led clinics
• Telephone–delivered (managers sympathetic)

17. Improvement in Number of Patients Seen in Clinic with Complete
Care Plan
Total
% per clinic % per clinic
attended with
with
July to
complete complete
November care plan care plan
LTFU Data Collection for July - clinics
in July
in Nov
November 2011
2011
2011
Adult Medical Clinic
113
25%
91%
Adult Nurse Led
39
100%
100%
Adult Telephone
98
100%
100%
Paediatric Medical Clinic
74
44%
93%
Paediatric Nurse Led
7
25%
Paed Telephone Clinic
27
100%
100%
358
70%
95%

18. Other complimentary activity
• Psychosocial oncology research- Penny Wright
• Patient-reported outcomes in survivors
• Q-Tool
• Learning re IT- Clinical Cancer Portal
• Process, confidentiality
• PPM and integration

19. Q-Tool

20. Care plans
• In ppm- dynamic, easier to use & reflected in patient
letters

22. Adult referrals
(developing wider adult service collaboratively)
Adult LTFU Referrals for 2013
Month 1
45
40
Paed
35
Germ Cell
30
Sarcoma
25
GP
20
Ext Cons
15
Haem
10
Self
5
0
Adult 2013
Paed
11
Germ Cell
12
Sarcoma
1
GP
11
Ext Cons
1
Haem
4
Self
1

23. Next- Primary care?- survey 2011
Dutton et al 2011
Commissioning of remote surveillance with a bundled tarriff