Apology without action means nought, says patient
The Southern District Health Board has publicly apologised for its colonoscopy service delivery failures and committed to fixing them, but patients say they want to know how things will change. Louisa Steyl reports.
Wa¯ naka grandfather Paul Cosgrove has made peace with the fact that he’s living on borrowed time. He knows that if his bowel cancer had been detected earlier, it could have been treated.
Cosgrove feels let down by the Southern District Health Board.
His GP referred him for a colonoscopy in August 2018 and the reply he received 20 days later said the colonoscopy triage team was ‘‘unable to accept’’ him for a colonoscopy. A letter sent to his GP said not enough blood tests had been done to confirm his high suspicion of cancer.
But Cosgrove’s symptoms – which included sudden changes to his bowel habits, anaemia, lethargy and reduced appetite – persisted.
So when an at-home test kit arrived in the post in May 2019 as part of the National Bowel Screening Programme, he took it straight away. The faecal immunochemical test came back positive for traces of blood, and he underwent a colonoscopy in June 2019 at the age of 63. By this stage it has spread to his lungs and liver. His prognosis is terminal.
Cosgrove believes his cancer would have been treatable if he was diagnosed earlier, when he first started noticing his symptoms.
‘‘They can’t fix me. All they’re doing is keeping me alive.’’
The Southern District Health Board did not answer questions about why Cosgrove’s referral was declined, citing privacy concerns, despite him providing Stuff with a signed privacy waiver.
The Ministry of Health’s criteria for GP referrals for colonoscopies says patients older than 60 who have experienced more than six weeks of altered bowel movements should be placed on the non-urgent wait list.
Cosgrove considered taking legal action, but ultimately decided, on the advice of his lawyer, that the stress it would cause was the last thing he needed. He felt that without action, the DHB’s apology was nothing more than ‘‘lip service’’.
Three independent reports have been delivered to the SDHB in two years – each one identifying problems within the board’s gastrointestinal department that had led to patients waiting longer than they should for colonoscopies.
Each one came with a set of recommendations for how to fix it.
The scathing reviews
The first external review into the SDHB’s colonoscopy services, written by Canterbury Charity Hospital founder Phil Bagshaw and Dr Steven Ding, was delivered to the board in May 2019, following complaints about service delivery and an internal survey in 2017.
The former medical council chair and Auckland surgeon was asked to do another audit and his recommendations were released publicly in January 2020.
The Bagshaw/Ding report was criticised for only reviewing 20 of the 102 cases (between 2013 and 2018) the two set out to audit, because of time constraints.
So Auckland colorectal surgeon and National Bowel Cancer Working Group chairman Ian Bissett and Rutherford Clinic general manager Kate Broome were asked to review the remaining cases.
Their report, released in October 2020, only looked at 50 more cases, because ‘‘the system of managing the patient journey was almost impossible to audit, involving two different databases and also notes on paper’’.
All three reports detailed strained relationships between clinicians and management, along with poor record-keeping and an inconsistent approach to how it accepted and prioritised patients referred for colonoscopies.
Who is responsible?
When the Bissett/Broome report was delivered to the SDHB in October, it apologised to the public, taking responsibility for ‘‘a lack of focus, lack of clarity, and lack of reporting’’.
It also committed to making changes to its referral processes and data reporting.
But no-one has been held accountable for the ‘‘lapses and inadequacies in colonoscopy services over the past several years,’’ as the board called it.
Cancer care advocate and founder of the Southland Charity Hospital Melissa Vining is calling for an employment investigation.
She wants to know why patients weren’t being triaged in line with Ministry of Health specifications and why specialist referrals were being overridden.
She said: ‘‘I want to know who was responsible. Management should have been actioning recommendations in the reports.’’ The board’s incoming chairman, Pete Hodgson, who took office in January, has acknowledged her request, she said, and she expected a reply early this year.
Vining said southern medical professionals were doing their best but were under resourced.
Her husband died of bowel cancer and the charity hospital the two founded will initially focus on meeting the unmet colonoscopy needs of patients in the SDHB catchment area.
The health board had among the highest rates of declined referrals in the country (15 per cent) and hadn’t increased its colonoscopy resources in the past 10 years, Vining said.
‘‘Cosie [Paul Cosgrove] is an example of an actual human who was declined [a colonoscopy] who needed it,’’ she said.
Southern DHB acting chief executive Lisa Gestro said responsibility for its colonoscopy failures was shared by SDHB governance, management and clinicians. ‘‘In October the board committed to taking more effective action to deliver the endoscopy care the community is entitled to.’’
It was working to make the triage process ‘‘more transparent and robust’’, Gestro said.
The SDHB was still recovering from the Covid-19 lockdown, and the flow-on effects continued to impact its services, including endoscopy.
‘‘Therefore whilst our waiting times for urgent and non-urgent symptomatic colonoscopies together with bowel screening colonoscopies are within ministry targets, our waiting time for surveillance colonoscopies exceeds that of a year ago,’’ she said.
Southland patients currently waiting for their surveillance colonoscopy have been waiting a median time of 116 days past their planned date – against the ministry target of 84 days.
The board was unable to pull comparative data for December 2019, but a performance report sent to the ministry at the time said 87 per cent of patients had received their urgent colonoscopies within 14 days.
About 75 per cent of patients on the list for non-urgent colonoscopies received them in 42 days.
The SDHB’s general manager of medicine, women’s and children’s health, Simon Donlevy, said the board was now offering appointments for Southland patients in Dunedin, where the waiting time was somewhat shorter, to try to catch up.
‘‘While this has further added to the healthcare challenges that we face in 2021, we are committed to focusing on improvement and rebuilding trust in a robust colonoscopy service for the people of the Southern community,’’ Gestro said.
Cosgrove and Vining feel the board’s apology will be meaningless without action.
The man to fix it
Andrew Connolly, who wrote the second independent review, has been appointed to chair a new Endoscopy Oversight Group.
He is also a Crown monitor for the board and a gastrointestinal specialist.
He is ‘‘cautiously optimistic’’ that things are changing. Connolly’s chief concern was access to colonoscopies for patients with bowel symptoms, as these have been strictly rationed in recent years.
In his report released in January last year, Connolly found that referrals from gastroenterology specialists were going through a review panel and being judged against ministry guidelines designed for GPs, resulting in fewer patients making it onto waiting lists.
Typically, GP referrals should be assessed against the National Direct Access Criteria. When a referral is declined, GPs would usually send their patients to a gastrointestinal specialist, whose referral should theoretically hold more weight. But this had historically not been the case in Southland and Otago.
‘‘The processes were not necessarily being applied consistently to maintain clinical safety,’’ Connolly said.
One of the first changes he made was to clarify the referral process.
A referral group has been set up to provide a second opinion on declined referrals.
Connolly has been working to create more uniform reporting and find consensus on the criteria for prioritising patients.
‘‘Data seems to vary depending on who you ask,’’ he said.
The board’s internal referral system has been paperbased until now, and as the latest report – by Bissett and Broome – says: ‘‘There even appear to be patients that are lost after initial acceptance for colonoscopy.’’
Stuff asked DHBs around the country for records on colonoscopy waiting list numbers and times for the past two years, under the Official Information Act.
The data shows inconsistencies in colonoscopy reporting across district health boards nationally.
Some use a single endoscopy waiting list, while others categorise patients according to urgency. Some record the number of days patients have been waiting for a scope, while others report the number of days they’ve been waiting over ministryrecommended time frames.
During a board meeting in August last year, chief executive Chris Fleming asked that the SDHB’s colonoscopy waiting lists and waiting times be reported alongside regional comparisons, as he thought the board’s numbers were average relative to the rest of the country.
As far as direct comparisons go, the SDHB was doing pretty well.
At the end of August 2020, patients from the Hawke’s District Health Board – which serves roughly half the size of Southern DHBs population – were waiting an average of 56 days for a non-urgent colonoscopy, while SDHB patients were waiting 35 days.
The Northland District Health Board, which serves a population of 194,600, had one of the longest waits for non-urgent colonoscopies at 102 days, while those from the Waikato District Health Board, serving 438,300 patients, waited an average of 13 days.
The Waitemata¯ District Health Board’s director of healthcare provider services, Mark Shepherd, advised caution when comparing these numbers. ‘‘Differences in population size and demographics have a direct impact on the results reported,’’ he said.
Demand a problem
Connolly said the reason why access to colonoscopies was such a contentious issue in the south was because of the inconsistencies in prioritising patients, against the backdrop of the highest bowel cancer rates in the county.
The board had been unable to keep up with the needs of its growing population.
‘‘The demand side of the equation is a major part of the problem,’’ Connolly said. The Broome/Bissett report showed that the board hadn’t increased the number of colonoscopies it offered, or could offer, in recent years, he said.
Ministry guidelines recommend that patients on the waiting list for non-urgent diagnostic colonoscopies should undergo their scope within 42 days.
On September 28, 2020, the 106 patients on the SDHB’s waiting list for this category had waited an average of 25 days, but some had been waiting up 202 days.
‘‘That’s where the clinical risk lies,’’ Connolly said. If a patient was waiting a week or so longer than they should, it wouldn’t make a clinical difference, he said, but if patients were waiting significantly longer, there was a risk that they would be diagnosed with a more advanced cancer.
The September numbers included a curious ‘‘category C’’ waiting list that doesn’t appear on ministry waiting list guidelines – which categorise colonoscopies as urgent, non-urgent, surveillance scopes, and referrals under the National Bowel Screening Programme.
Connolly had previously raised concerns about an undefined ‘‘category C’’ waiting list the SDHB was using for patients who did not meet ministry criteria for urgent and non-urgent lists.
He feared specialist referrals, which were being judged against the criteria designed for GP referrals, were ending up on this list.
In other words, a specialist may have referred a patient because they were showing bowel symptoms, but if they were under a certain age, or didn’t have accompanying symptoms like rectal bleeding, they were placed on the ‘‘category C’’ list.
In September last year, 54 Southland patients and 57 Otago patients were on this list. For the Southland patients, the average wait was 74 days, and the longest 237. Otago patients were waiting an average of 31 days, or up to 122.
Connolly is adamant that this ‘‘category C’’ list has been scrapped and he had been assured by several doctors and managers that the patients on the category C list had been reprioritised on the urgent and non-urgent lists.
‘‘Symptomatic patients should only be in category A or B,’’ he said.
Connolly said the SDHB was working on an internal production plan, looking for ways to increase capacity or scoping sessions.
The board’s IT department has been asked to digitise referrals and write programming to make it easier to pull and analyse data.
Over time, improved reporting would help the board make better resource planning decisions, Connolly said, noting that board members had made it very clear they wanted to know if extra resources were needed.
Connolly acknowledged that there was still work to be done – especially in terms of rebuilding trust between clinicians and between the SDHB and the public.
‘‘The people of Southern need confidence,’’ he said.
He also encouraged patients with symptoms to see their GP, and for GPs to keep referring patients.
Connolly stressed that there were no issues with the quality of service doctors were providing and he praised the board and staff for taking the first steps forward, together.
Vining said she had full confidence that Connolly was the right man to turn things around, but noted that things on the ground had not yet improved.
Professor Ian Bissett, who coauthored the last review, was encouraged and pleased to hear about the Endoscopy Oversight Group. ‘‘That sounds like a big step forward,’’ he said.
‘‘Cosie [Paul Cosgrove] is an example of an actual human who was declined [a colonoscopy] who needed it.’’ Melissa Vining
Screening may bring relief
The Ministry of Health began rolling out the National Bowel Screening Programme in 2017, offering at-home faecal tests to New Zealanders over the age of 60.
The SDHB joined the programme in April 2018, and since then, between 43 per cent and 73 per cent of the non-urgent colonoscopies it performed per month were for patients whose home test picked up irregularities.
But the programme has also come under fire from people such as Christchurch Charity Hospital founder Phil Bagshaw, who said these scopes were being prioritised over symptomatic patients.
Cancer Society of New Zealand medical director Dr Chris Jackson said colonoscopy rates had increased 40 per cent nationally, but ‘‘that’s clearly not enough to keep up’’. For oncologists, the bowel screening programme couldn’t be rolled out fast enough, he said, and in an ideal world he would like to see the age range expanded.
But Jackson warned that symptomatic patients who also needed colonoscopies could now be ignored, and he said health boards needed to find balance.
‘‘Fundamentally, it’s a question of resources,’’ he said.
Jackson was excited about the Cancer Control Agency and the National Bowel Cancer Working Group’s research on new diagnostic tools.
Stage one of a pilot project is under way at Whanganui Hospital to determine if the faecal immunochemical test (FIT) could be used more widely to determine if symptomatic patients needed further investigation.
Bissett is the primary investigator for the pilot and said FIT could be used to identify the patients on waiting lists who were most likely to have bowel disease, thereby streamlining the lists.
Promising evidence had already been found overseas and if it worked in a New Zealand context, he hoped to roll it out throughout the country.