Colonoscopy: grief and legal proceedings

What next for the 157 affected?

Among the questions scheduled for this week's sitting of the House of Keys, Julie Edge MHK asked the Minister for Health and Social Care when the report on colonoscopy, which was commissioned in May 2017, will be published.

This was the commentary Manx Radio ran ahead of the sitting:

"Lost in the system."

That was the excuse given to one patient, who was left waiting for three years to receive essential treatment for bowel disease on the Isle of Man.

In May last year, 157 patients formed a backlog of cases stemming back to 2011, which the Department of Health says has now been cleared in the last year.

And in May 2017, a report was commissioned to look into what a local support charity called "a catastrophic administrative failure in patient care, by the Department of Health."

Those words come from the Isle of Man Health and Care Association, which advocates for those who have felt aggrieved by the NHS care on the Island.

Last week, Manx Radio issued an appeal to hear from any individuals who had been affected by the backlog, particularly from those who were diagnosed with bowel cancer after a planned colonoscopy failed to materialise between 2011 and 2017.

The newsroom was inundated with responses.

Many cases are still subject to legal proceedings, and even those that aren't are of course highly sensitive in nature, so we've endeavoured to preserve individuals' anonymity.

One patient contacted us, who has been having regular colonoscopies every three years, as they have a family history of bowel cancer.

In autumn 2016, this patient was 18 months past the three-year recall protocol and, with concerns about the system at Noble's Hospital, arranged for a private colonoscopy to be carried out, which revealed a large abnormality requiring referral for treatment in Liverpool.

So, as a result of the recall procedure mismanagement by the managers in the department, this patient needed another colonoscopy in December 2016 to review the surgery carried out three months earlier.

If they'd been seen at the normal three-year review time, the abnormality would have been treated sooner and the surgery less invasive.

This patient is now due for a repeat colonoscopy, at the correct review date, soon.

Another patient, who has a history of bowel cancer in the family, says they 'have been fighting for years' to secure a colonoscopy.

The problem began in 2014, when the individual collapsed in the street following abdominal pains and blood loss.

A year later, their GP referred them to the consultant gastroenterologist at Noble's where they were told their case would require further investigation.

Months later, they began calling and writing to the hospital having had no update for the follow-up.

It was revealed the department in fact had no record of the meeting and the subsequent referral for a colonoscopy.

Through their endeavours, the patient was instead referred to a dietitian who they themselves couldn't understand why a colonoscopy hadn't been arranged. 

Having sought counsel with a GP in Scotland, the patient was told they would have received the service within six weeks of diagnosis, if they had lived there.  

Just this year, they took their case to the Health Minister David Ashford who helped schedule a colonoscopy for January 2019, four years on from the first complaint.

"It should have been routine" they said, but now find themselves 'stressed, anxious and terrified' of the hospital.

"When I last saw the consultant, it was disgusting, he couldn't even make eye contact with me. It's uncomfortable being seen to by the very people I've complained about."

For some, though, the consequences of the mismanagement were far more severe.

One patient has been left with serious, lifelong and life-changing damage as a result of being neglected by the Department of Health and Social Care.

This individual's troubles date back to 2010, with repeated concerning symptoms largely ignored before being formally diagnosed as a rectal prolapse in 2013.

Having been referred for a bowel MRI in Liverpool in 2015, this patient had surgery in 2016 and 2017, but due to the length of time before any action was taken, both surgeries were unsuccessful.

Noble's Hospital failed to diagnose and refer the patient for appropriate procedures within a reasonable timescale, which has led to permanent, irreversible damage.

This patient is now left with a machine to use each day to go to the toilet, with clinical medical negligence cases ongoing.

For another patient, the consequences of said administrative failure were terminal.

A cancer patient showed signs of an abnormality in the bowel, which were highlighted by a PET scan in Manchester.

This individual was referred for a colonoscopy, which went ahead seven months later, and revealed a high-grade dysplacea which is seen as a prelude to cancer.

This was to be "kept a very close eye on", with a follow-up colonoscopy scheduled for six months later.

Despite "constant phone calls to the colonoscopy department," from the patient, immediate family, the patient's GP and other consultants the patient was under, the follow-up never happened.

The next appointment offered to the patient came two days before the individual died, in 2017.

On one occasion, the patient was told they'd been "lost in the system", another time that "there was too much demand", then that the patient "was on the waiting list", and later that a consultant "had never heard of the case".

In 18 months, the patient went from 13 stone to five and a half, and whilst there's no definitive evidence that a bowel problem was the cause of the patient's death, many symptoms suggest that's the case.

The audio below is Julie Edge MHK's question, and Minister Ashford's response, in Tuesday's (18) sitting of the House of Keys.

Following the sitting, the Isle of Man Health and Care Association said this:

Tune into Mandate this evening (Wed 19), and tomorrow morning, to hear Minister Ashford's response.