Cancer waiting times standards in Scotland: clinical review

5. The Cancer Waiting Times (CWT) Review

5.1 Scope and remit

The Review should consider:

• What new measures along the cancer pathway(s) would give clinically meaningful information to inform planning and assess and enhance service quality;
• What measures (new or existing) are most valued by patients and why;
• Are the current cancer waiting times ( CWT) standards clinically justified?
• Should additional specific cancer types be included or excluded from the standards?

And ensure that:

• The CWT standards remain patient-centred by engaging with patient groups about what they most value;
• Any revisions to CWT standards are achievable in terms of service delivery;
• Specific clinical issues identified within the treatment/diagnostic pathway for those cancers where additional options now require more patient thinking time including those with a 'watch and wait' recommendation are tackled;
• Consideration is given to the impact of any changes to the CWT standards on wider systems within local health economies.

The Review should:

• Review the literature covering the evidence for CWT standards and any relevant independent studies;
• Compare policies between the four devolved administrations, particularly the different approaches to implementing and monitoring any CWT standards and to share examples of best practice;
• Engage widely with third sector, NHS organisations and relevant social care teams in addition to key patient groups and clinical staff;
• Take account of other developing areas of health policy;
• Review relevant ministerial correspondence received during the Review period around cancer waiting times and;
• Ensure the information burden placed on NHS Scotland through the need to collect data, implement, manage and monitor any revised CWT standards is considered within the scope of the Review.

5.2 Steering group

The Clinical Review of CWT Standards steering group, consisting of NHS primary and secondary care clinicians, NHS managers, Scottish Government cancer officials and ISD Scotland representatives, was formed in March 2017 to reflect geography and range of expertise (see Appendix A for the full membership list).

Each member agreed to act as a conduit for information between the Review steering group and relevant clinical colleagues, both locally and regionally.

The group initially agreed on the direction of the Review and the specific questions to be considered as part of this. While reviewing the available data and insight from NHS Boards on existing patient cancer pathways additional data was requested from Boards to help understand pathway complexities (see Appendix B). The data gathered helped shape the content for the large stakeholder event held in June 2017.

A further steering group meeting was held in September 2017 where the emerging themes for recommendations were fully discussed. Recommendations were derived after consideration of the inputs of all contributing stakeholder groups, the public and patient questionnaire and comments returned centrally to the steering group. Agreed recommendations were circulated in November 2017 for final agreement.

5.3 Stakeholder event

A stakeholder event attended by over 80 people from the public, third sector, ISD Scotland data and audit staff, Cancer Managers, a range of clinicians and Scottish Government officials was held in June 2017. The event provided a platform for discussion, debate and dialogue around existing CWT standards while sharing best practice from NHS Boards and pathways.

Engagement with those in attendance on the day continued after the event to encourage further input to the Review.

Plenary sessions with invited speakers explored the impact of CWT standards on patient outcomes, Realistic Medicine, pathway complexity, background evidence and other key topics. Six parallel workshops ran on the day to allow maximal opportunity for dialogue and sharing of views amongst participants (see Appendix C for the full event programme).

5.4 Public and patient involvement

Input from patients, carers and the wider public was recognised as critical at the outset of the Review to better understand attitudes and expectations around timings in cancer pathways. It was important to better understand the views of individuals who had been through a cancer pathway previously and those who had not – to compare their understanding of the process and experiences.

The questionnaire, developed with input from patient groups, was delivered by an independent research company - Kantar TNS. 1,018 members of the public were questioned face-to-face while over 70 current/previous cancer patients completed it online. The full questionnaire is available in Appendix D.

In essence, the answers showed confidence and trust in the primary care team and secondary care clinicians. However public expectations of the speed within which investigations should be done, and results obtained, were impractically short e.g. a few days.

An area of increased concern was the lack of easily accessible practical information on tests, possible results, timings and on-going advice and support during the waiting process.