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Macmillan Cancer Support

Sustainable Cancer Service Redesign: Transforming Cancer Follow up Programme

Background

There are currently 63,000 people living with cancer in Northern Ireland. By 2030, numbers are expected to rise to over 110,000. Our existing healthcare system will not be able to cope with growing needs for patient surveillance and follow-up, rehabilitation and secondary prevention.

Although cancer is increasingly becoming a chronic condition, aftercare is framed around acute illness with the focus on monitoring and review. However, evidence shows that up to 70% of recurrence is picked up outside clinics.

The Transforming Cancer Follow up programme (2011 – 2014) was the result of a strategic partnership between Macmillan and Northern Ireland’s Cancer Network (NICaN), Public Health Agency and Health and Social Care Board.

The overall aim of Transforming Cancer Follow up (TCFU) was to introduce and test new models of breast and prostate cancer follow up across Northern Ireland which would:

  • Improve the quality of patients’ aftercare experience and promote their health & wellbeing through self-management and holistic needs assessment (HNA)
  • Reduce inefficiencies in hospital follow up
  • Enhance service coordination and integration
  • Guarantee sustainability

What has been achieved so far?

The TCFU team was made up of Macmillan Project Managers based in Northern Ireland’s five health trusts.  They began by redesigning breast cancer aftercare and replacing a “one size fits all” approach with a more person-centred service. A risk stratified approach places breast cancer patients into one of three pathways: self directed aftercare (SDA), shared care or complex care.

It was initially agreed that 30% of newly diagnosed breast cancer patients should be placed on the SDA pathway with the support of the Macmillan Recovery Package. This ensures that every patient has access to a Clinical Nurse Specialist (CNS), who carries out a holistic needs assessment and produces a written “care plan”. An additional treatment summary helps both patients and GPs understand their treatment and possible longer term consequences.  Finally, people are invited to go along to a “health & wellbeing” event, where they hear about all the practical things they can do to keep well. 

Patients on the SDA pathway are offered a safer, more responsive service.  They have rapid access back into the system via their CNS.  Clinical teams now have more time to focus on complex cases.  

By December 2014, when the final PwC evaluation was carried out, 58% of newly diagnosed patients were on the self directed aftercare pathway.  As a result, waiting lists for routine follow up appointments had been reduced over the two year evaluation period, showing a:

  • 28% reduction in surgical breast review waiting lists
  • 39% reduction of patients in duplication between oncology and surgery review waiting lists
  • 4% reduction in oncology breast review waiting list

Patient experience has improved as a direct result of these changes.  The final evaluation highlighted the following increases in satisfaction rates amongst patients on the new breast programme, compared to the baseline survey:

  • The proportion of patients who said they were aware of the importance of lifestyle changes increased by 34% (45% - 79%)
  • The proportion of patients who strongly agreed/agreed that they had been supported to manage the practical impact of their cancer increased by 25% (40% - 65%)
  • The proportion of patients who strongly agreed/agreed that they had been supported to manage the emotional impact of their cancer increased by 23% (44% to 67%)
  • The proportion of patients who strongly agreed/agreed that they had been supported to manage the physical impact of their cancer increased by 16% (59% to 75%)

Progress to date

In 2015, the breast cancer programme showed further exceptional progress (relative to figures from the final evaluation report ) on the key deliverables of TCFU across Northern Ireland, including:

  • Proportionally more new patients allocated to the ‘Self Directed Aftercare’ pathway (An average of 64% - ranging from 51% to 78% across the five Health Trusts)
  • Proportionally more patients offered post-surgery HNA
  • Reduced surgical review waiting lists
  • Reduced duplication between oncology and surgery appointments

Under the Cancer Reform banner, TCFU principles are being implemented in cancer services across Northern Ireland. Key priority areas for roll-out include prostate, gynaecological, colorectal and haematological cancers.

Conclusions

The TCFU breast programme represents a welcome demonstration that cancer service redesign can be embedded and sustained after an initial project comes to an end. However, the prostate programme has been more challenging. With a regional commitment to the roll-out of TCFU, including steps towards implementing electronic HNA and the Health and Social Care Board’s planned expansion of the Clinical Nurse Specialist workforce, the TCFU programme will be adapted for different cancer types and services.