December 13, 2021

Dear Health and Disability Commissioner

Re: Letter of support for call for a Commissioner-led inquiry

Bowel Cancer New Zealand (NZ) is writing with concern about barriers to timely diagnosis of colorectal cancer experienced by people in the Southern DHB region. We understand you have had written communications, and a zoom meeting with Dr Philip Bagshaw and others, to discuss the work they have undertaken to understand the magnitude and consequences of diagnostic delays. Bowel Cancer NZ supports a call for a Commissioner-led inquiry to independently understand access issues to diagnostic endoscopy services for people referred with symptoms of colorectal cancer in the Southern DHB (SDHB) region.

Bowel Cancer NZ was founded in 2010 by a group of New Zealanders affected by bowel cancer; we continue to be a patient-focused organisation that aims to reduce the impact of bowel cancer on our community. We provide a range of services, including a large patient support group where people’s experiences of delayed diagnosis are sadly an all too common phenomenon.

In the SDHB region GP, patient and family reports of declined referrals for symptomatic patients have been ongoing. When symptomatic patients are declined access to SDHB diagnostic endoscopy services they may: try and access diagnostic services privately, try for re-referral to the SDHB after time has passed, and some will be falsely reassured that they do not have cancer (when in truth they do). As you will know, delayed diagnosis leads to an increased risk of a poor outcome – that the cancer will have spread by the time a diagnosis is eventually and inevitably made.

Research involving Bowel Cancer NZ has identified the types of barriers to timely diagnosis that New Zealanders experience. We know that when referrals from experienced health professionals (e.g. GPs or other specialists) for symptomatic patients are declined – inequities are introduced. Many New Zealanders are unable to afford to pay for a private colonoscopy, so when private diagnostic pathways are the only route available, we are accepting that poorer people will be at increased risk of poor outcomes including premature death. Nationally, and also in the SDHB, inequities in terms of life expectancy are already known to fall most heavily on Māori who are over-represented in the lower income groups. Bowel Cancer NZ is therefore also concerned that declined referrals of symptomatic patients leads to additional financial and ethnicity-based inequities.

Bowel Cancer NZ called for, and fully supports, the introduction of the National Bowel Screening Programme (NBSP). However, the programme as it has been introduced is not the NBSP as originally conceived. Currently, screening is only available to those aged 60-74 years (rather than 50-74 years in the Pilot study). Such age restrictions compound the inequities described above for those aged under 60. The screening programme is also explicitly designed for asymptomatic patients and it has successfully diagnosed asymptomatic people with bowel cancer in the SDHB. This is an excellent outcome – particularly when the diagnosis occurs at an early stage when the prognosis for a full recovery is greatly increased. However, the nature of the screening programme, including its age restrictions and explicitly denying screening for people who are symptomatic or with a prior history of colorectal cancer (which can reoccur) makes it even more critical that clear pathways to diagnostic colonoscopy are available for symptomatic patients. Ongoing reports of people declined access is therefore of much concern to our charity.

Bowel Cancer NZ appreciates that the individual SDHB staff members are working to deliver the best care they can within a constrained environment, and that apologies for past system referral failures have been made by the SDHB. However, it is our hope that a Commissioner led inquiry may be able to identify: past patients denied diagnostic referral (and consequences for these people), ongoing barriers to diagnosis in the SDHB, opportunities for improved system processes and transparency to contribute to improved (and equitable) outcomes for future symptomatic patients in the SDHB. We also believe that this work would extend beyond the SDHB boundaries to support symptomatic patients in other regions of the country, and hope that a decision to inquire into this important issue can be supported.

Yours sincerely,

Professor Sarah Derrett
Bowel Cancer NZ Board member on behalf of Bowel Cancer NZ

November 2021