Leeds LTFU: The Glaser/Dutton effect

Dan Stark, Michelle Kwok-Williams, Adam Glaser- MDs

Heather Berry, Naseem Sarwar - CNSs

Jennifer Dutton - Patient Services & MDT co-ordinator

Where we were

• Date – 19??-2005

• > 900 patients– Paed-cardiac-

endocrine-fertility collaboration

– Excellent nurse specialist

Dutton, Glaser et al 2011

Pressures

• Waiting lists

– Patient lobbies

– Re-referrals

– DNA rates

• Morbidity unmet

– Re-referrals, sad stories

Summaries

Needs assessments

Care plans

• Derived from a risks checklist based upon disease & treatment

• Dictated by clinician into each letter, based upon earlier letters

Referrals

• Paediatric survivors

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

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

Pathways

Risk stratification- Dutton et al 2011

Nurse-led and telephone clinics

Health promotion

• Structured

– Cardiovascular- exercise, weight, tobacco

– Alcohol

– Sun

– Contraception

– Vaccination (Splenectomy)

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)

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)

Now

• Combined medical input

• Nurse-led clinics

• Telephone–delivered (managers sympathetic)

Improvement in Number of Patients Seen in Clinic with Complete Care Plan

LTFU Data Collection for July -November 2011

Total attended July to November clinics

% per clinic with complete care plan in July 2011

% per clinic with complete care plan in Nov 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%

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

Q-Tool

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

letters

Adult referrals(developing wider adult service collaboratively)

Adult LTFU Referrals for 2013

0

5

10

15

20

25

30

35

40

45

Paed

Germ Cell

Sarcoma

GP

Ext Cons

Haem

Self

Paed 11

Germ Cell 12

Sarcoma 1

GP 11

Ext Cons 1

Haem 4

Self 1

Adult 2013

Month 1

Next- Primary care?- survey 2011

Dutton et al 2011

Commissioning of remote surveillance with a bundled tarriff