Transforming Cancer Follow Up ProgrammeMrs Mary Jo Thompson

Nurse Consultant , Public Health Agency / NICaN Mrs Rosey Whittle

Breast Care Nurse, South Eastern HSCT

NIPEC Annual ConferenceProfessional Standards Enhancing Person-Centred Care

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%

CMO involvement

Professional Workshop 2010

Macmillan offer of funding

Patient / Carer Workshop 2009

Ministerial approval

CE Regional Board

Director of Commissioning

TCFU Programme Lead

Approach

Programme aims to.....

• Improve the patient experience and health & well being

• Make best use of available resources

• Enhance coordination and integration across boundaries

National Cancer Survivorship Initiative

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%)

Breast patient survey n=250 Prostate patient survey n=247

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

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

Early wins

• Survivorship websitewww.survviorship.cancerni.net

• Health & wellbeing events

www.survivorship.cancerni.net

Calendar of events

Challenging change process

Change methodologies & tools

Reflecting on the human dimensions of change

You can’t impose anything on anyone and expect them to be committed to it Edgar Schein

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

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

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

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

Holistic Needs Assessments

Rosey WhittleMacmillan Breast care Nurse

South Eastern H&SC Trust

NIPEC Annual ConferenceProfessional Standards Enhancing Person-Centred Care

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)

Recovery Package

‘This provides a good summary of (alert

symptoms & toxicities) in one letter.’

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

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

Main Concerns Identified

Fatigue 42% Worry, fear or anxiety 24%

Depression 16%Hot flushes 16%

Insurance & travel 12%Anger 10%

Housework 8%Diet & nutrition 6%

Advice & Signposting

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

Impact of HNAHelp or adaptFatigue 100%Fear 80%Increase Physical Activity 75%Depression 75%

Confidence/InformationEffects of Treatment 100%Signs & Symptoms to look out for 95%

Manage your health 93.3%

‘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.’

Conclusion