Giving patients access to the best clinical pathways is a story of design and implementation - but knowing how your programme is being adopted is not always easy. SCWs work with the NHS Cancer Programme shows how it can be done.
Challenge
In late 2019, the NHS Cancer Programme team wanted to understand how widely and effectively Personalised Stratified Follow Up (PSFU) was being adopted across England. Cancer Alliances report on progress through quarterly assurance process, but real value comes in the fuller narrative that sits behind this. In response to this, SCW was asked to conduct a Process Evaluation Study of PSFU stakeholders across England.
Specifically, they wanted to know what good practice existed and how it was being spread to support accelerating PSFU to be fully embedded across England.
PSFU Pathway Outline. Taken from NHSE Implementing PSFU Pathways - A handbook for local health and care systems
PSFU is closely linked to Patient Initiated Follow Up (PIFU). It seeks to give back control to people living with and beyond cancer by ensuring that they are able to access specialist help when it is required and have the confidence to make decisions about their own health and wellbeing. The focus is on education, support and planning to optimise supported self-management. Open communication between clinical teams and people living with and beyond cancer (LWBC) enables this shift away from a traditional medical model and allows the focus to be on patients who require complex follow-up intervention.
Access to PSFU has quality-of-life benefits. For example, not having to take time off work and/ or arrange childcare or other carer responsibilities in order to attend an unnecessary outpatient appointment. PSFU delivers high-quality clinical outcomes and has the potential to optimise outpatient activity. It also offers significant efficiency savings in outpatient appointments.
The full rollout of PSFU is an ambition of the NHS Long Term Plan and has an important role to play in post-COVID recovery.
Approach
The evaluation explored how Cancer Alliances, STPs/ICSs and their membership organisations, supported by NHS Regions are working together to meet the national ambition of all clinically appropriate cancer patients having access to PSFU by 2023.
A multi-disciplinary team, led by SCW’s Clinical Services Programme Lead for Cancer Sarah Warren, co-created an evaluation approach.
The aim was to ensure the evaluation maximised its contribution to achieving the 2030 ambition. This included collating pre-interview information from participants. This ensured maximum insight and enabled a rich picture to be gained from the interviews.
Data analysis was carried out in real-time so good practice could be shared early. We also used this analysis to inform a ‘quality improvement’ approach, which refined interviews as the fieldwork progressed. This meant the study was ‘alive’ in the sense that questioning and themes evolved as it progressed.
SCW conducted interviews and surveys with
• 15 of the 19 Cancer Alliances
• The National Cancer Programme
• Macmillan Cancer Support
• NHS Regional Cancer leads from all of the Regions
All took place between Feb-April 2020 except Regional Cancer Leads (COVID-related delay to July).
Impact
Insights unlocked
The wealth of new insight culminated in a co-edited report with the National Cancer Programme. It was “launched” in October 2020 at a national share-and-learn webinar with Cancer Alliance LWBC leads.
Due to the COVID-19 pandemic, the original findings of the evaluation needed to be re-centred to stay relevant in a rapidly changing context. By continuing to “live edit” and include commentary on new policy and guidance the evaluation report kept pace with events and its recommendations were still relevant.
“A high quality well produced report, which we are collectively proud of. Well aligned with Phase 3 guidance, PIFU and wider policy.” National Cancer Programme feedback on the report
Findings in headline:
PSFU is recognised practice – but has yet to become “locked-in” as part of the whole cancer pathway.
There are some great achievements being made in particular cancer specialities, and it is now about expanding and embedding this practice in a whole pathway approach.
All Alliances reported digital challenges: aligning priorities, implementation delays, establishing sustainable funding, and interoperability of technology all presented challenges.
Funding is often short-term (12-24 months), which has the effect of inhibiting PSFU from becoming established. Cancer Support Workers, for example, are a highly effective role but their time in-role is often measured in months, increasing attrition and limiting who is attracted to the role.
Health inequalities are an area for greater focus. Specifically: variation in access, experience and outcomes. Something that the COVID-19 pandemic has brought into even sharper focus.
On the positive side, the sudden move to virtual ways of working brought about by COVID-19 was rocket fuel to the PSFU model and gathering new best practice is a major area of activity.
What next?
SCW made 10 recommendations based on findings. The National Cancer Programme produced a response to each and are already starting to see signs that many are being acted upon.
Evidence from this evaluation has informed policy development in 2020/21, 2021/22 and beyond. This conversation is ongoing as the evaluation report continues to be socialised.
The evidence from PSFU in cancer is directly supporting rollout of Patient Initiated Follow-Up into non-cancer specialties, which will contribute to reaching the LTP target of reducing NHS outpatient attendances by 30 million by 2023.
