1. Transforming Cancer Follow Up Programme
Mrs Mary Jo Thompson
Nurse Consultant , Public Health Agency / NICaN
Mrs Rosey Whittle
Breast Care Nurse, South Eastern HSCT
NIPEC Annual Conference
Professional Standards Enhancing Person-Centred Care

2. The cancer landscape is changing
11,000+ patient diagnosed with cancer every year
69,000+ people living with a diagnosis of cancer (diagnosed up to 18 years previously)
Issues with current system
Patient report unmet needs 40%
Our population is changing with a growing elderly population. The cancer landscape is changing
At the end of Numbers diagnosed with cancer during the year 11,073
Total number of people living with a diagnosis of cancer (diagnosed up to 18 years previously) is 69,377
Prevalence increasing 3.2% in females and 6.2% in males per annum
Issues with the current system with Routine hospital follow up is not as effective as it could be, most recurrence is detected outside follow up
And many appointments add little value to either patient or doctor
Care is framed around cancer as acute illness
A NI study reenforced many Uk studies which found 40% patients have unmet needs. Partnership Workshop in 2009 identified significant issues at the end of treatment “After care is an after thought” “Post treatment drop-off

3. Approach Ministerial approval Macmillan offer of funding
CE Regional Board
CMO involvement
Director of Commissioning
Professional Workshop 2010
TCFU Programme Lead
Patient / Carer Workshop 2009

4. Programme aims to.....
Improve the patient experience and health & well being
Make best use of available resources
Enhance coordination and integration across boundaries

5. Programme Structure was put in place with regional lead / programme manager and 5 local project managers one based in each Trust
By coincidence we were all nurses passionate about improving services for people affected by cancer

6. National Cancer Survivorship Initiative
Risk stratified approach to follow-up utilising supported self management approaches through patient empowerment and ensuring surveillance occurs in timely manner concordant with NICE guidance
Shared care approach utilising CNSs to undertake follow-up with clear guidance
National Cancer Survivorship Initiative 6

7. Evaluation pre-programme
Breast patient survey n=250
Prostate patient survey n=247
Evaluation pre-programme
Patients they received the medical support they needed 82.6% 82.3%
Patients felt less supported with
Physical impact of cancer 59.2% 47.6%
Emotional impact of cancer 44.3% 34.0%
Practical impact of cancer 40.0% 29.9%
Financial impact of cancer 29.5% 17.3%
Felt supported to make lifestyle changes to maximise health & well-being (31.3 % 32.6%)
Patients (247) across NI were asked to indicate their views on a range of different statements relating to their cancer care and support in NI. Compared to the findings of the baseline survey of breast cancer patients in Wave 1 of TCFU evaluation, prostate cancer patients were less likely to strongly agree or agree that they were supported to manage the wider impacts of cancer across all categories (e.g. physical, financial) than breast cancer patients

8. Breast - Self directed aftercare programme
Review mammography
Equipping the patient to self manage
Holistic needs assessment
Health & wellbeing events &
End of treatment summary record
Rapid access point
Survivorship services to support health & well being

9. Prostate Follow-up programme
6 regional nurse led follow-up pathways agreed
Varying degrees of implementation across Trusts
Implementation of recovery package
Health and wellbeing events
Holistic needs assessment
Survivorship services to support health & well-being

10. Early wins Survivorship website Health & wellbeing events
Health & wellbeing events

12. Calendar of events

13. Challenging change process

14. Change methodologies & tools
SERVICE IMPROVEMENT Process Mapping, Analysis, Redesign, Measurement for improvement, PDSA, Sustainability & Spread, Involving patients
PRACTICE DEVELOPMENT
Shared Vision, Creativity, Values & Beliefs, Facilitation, Person Centredness, Culture & Context, Claims Concerns Issues, Clinical Leadership
LEAN METHODOLOGY
A3 Project Planning, Transformational Maps, Value Stream Mapping etc

15. Reflecting on the human dimensions of change
Anatomy -
IT processes (time factors),
Project plans (realistic deliverables ,timeframes),
Funding (longer term),
Admin support (crucial at Trust level),
Measurement (attention to detail, be sure what is to be monitored)
Physiology -
Energy (project team and health professionals),
Emotions (understanding the context and local relationships),
Commitment (driver for change – commissioner /clinical need, evidence repository)
You can’t impose anything on anyone and expect them to be committed to it Edgar Schein

16. Achievements Breast
Review mammography implemented for all patients on SDA pathway
Timely mammograms, results to patients in timely manner
Plan to rollout to all Trust
Rapid access
Confidence in re-entering system, appt within 2 weeks if required
Full implementation of the recovery package
Health and wellbeing events, holistic needs assessment, treatment summary records

17. Achievements Breast 41% on New SDA pathway (1,095 End Aug 2014
30% reduction (1023 dual specialty follow-up)
25% reduction (2374) in waiting lists for breast surgical follow-up across region
12% reduction (442) waiting lists for oncology clinics for breast follow-up

18. Achievement Prostate PSA IT Tracking system
through Regional Information System for Oncology and Haematology
Go live January 2015
Pre PSA information leaflet
regionally agreed and available for GPs

19. Achievement Prostate
Regional agreement for six nurse led prostate follow-up pathways
Implementation of several pathways across 4 Trusts
Implementation of recovery package
holistic needs assessment
Establishing and provision of health and well- being events

20. Holistic Needs Assessments
Rosey Whittle
Macmillan Breast care Nurse
South Eastern H&SC Trust
NIPEC Annual Conference
Professional Standards Enhancing Person-Centred Care

21. 40% of cancer survivors in Northern Ireland have been found to have unmet needs following treatment (Santin 2012). There is a need to enable people living with and beyond cancer to have the best possible support and information to lead as active and normal lifestyles as possible. (NCSI 2010)

22. Recovery Package
‘This provides a good summary of (alert symptoms & toxicities) in one letter.’

24. Breast HNAs - Numbers Completed
Throughout NI utilising this new approach with concerns checklist
800+ completed for new patients on SDA pathway
500+ for patients on existing pathways and moved onto self directed aftercare pathway

25. SET Audit Results (Breast, Colorectal, Haematology, Urology)

26. Main Concerns Identified
Fatigue
42%
Worry, fear or anxiety
24%
Depression
16%
Hot flushes
Insurance & travel
12%
Anger
10%
Housework 8%
Diet & nutrition 6%

27. Advice & Signposting

28. Education Breast Awareness
‘Caring for yourself after Breast Cancer treatment’ leaflet
Automated mammography
Signs & Symptoms
Rapid access back into system
Breast Cancer Care Moving Forward Pack
Copy of Care Plan

29. Impact of HNA Help or adapt Confidence/Information Fatigue 100% Fear
80%
Increase Physical Activity
75%
Depression
Confidence/Information
Effects of Treatment
Signs & Symptoms to look out for
95%
Manage your health
93.3%

30. They are what nursing and caring is all about.
‘The CNS and support worker are great listeners, very understanding and very helpful. I had lost faith in nursing staff but these two girls especially the CNS, has got me through some very rough times.
They are what nursing and caring is all about.
I wouldn’t be here if it wasn’t for her.’

31. Conclusion The challenge remains
We have identified the key components required for improving survivorship needs of patients post cancer treatment
We are currently developing the new system to support this transformational change
Ensuring the aspects of the system are in place across the patient pathway and the right people piecing and brokering the different aspects together to ensure the the cogs are turning