Potential cancer victims face delays of up to four years for crucial tests
THOUSANDS of patients in the Lothians at increased risk of bowel cancer are being forced to wait up to four years for vital tests, the Evening News can reveal today.
A total of 2389 people have yet to be offered potentially life-saving colonoscopy examinations despite being due them as long ago as 2008 as part of a national screening programme.
Today, politicians and campaigners said they were “stunned” by the delays which put “lives at risk” and called for Health Secretary Alex Neil to intervene. NHS Lothian issued an apology to the affected patients, but warned that some could be forced to wait another two years before they are seen.
Of those still waiting, 46 were originally scheduled to undergo the procedure in 2008.
A Scottish Government spokeswoman said it had been made clear to NHS Lothian that the situation was “unacceptable” but said it was satisfied that the health board was working hard to deal with the situation.
Former Edinburgh MP John Barrett, who was treated for bowel cancer after he was diagnosed by a doctor using a colonoscopy last year, said the checks were a matter of “life and death”.
Mr Barrett, who was given the all-clear following his post- chemotherapy scan only yesterday, said: “I had no symptoms at all. Without the colonoscopy, I would still be in the dark. If these people aren’t getting them it’s a potential time bomb for the future, and it could be completely disastrous for the individuals concerned.
“One of the main ways of saving lives and treating people is to diagnose the cancer early. These colonoscopies must be made available.
“It could be a matter of life and death.
“There ought to be questions asked immediately about these figures and the Health Minister should make a statement as a matter of urgency.”
Delays in screening checks are a nationwide problem and NHS Lothian is one of the first health boards to provide a detailed breakdown of the figures. Waiting times for the surveillance programme had not previously been recorded, and the extent of the problem was only revealed after the health board’s new chief executive, Tim Davison, ordered that all services were examined to identify areas with excessive delays.
National guidelines state that patients with a moderate to high risk of developing bowel cancer should be offered the regular colonoscopies, in a separate programme to the wider screening initiative which sees 50 to 74-year-olds sent testing kits in the post.
The colonoscopy procedure typically takes around 45 minutes and is carried out by a physician using a camera on the end of a flexible tube.
Tests should take place at intervals of between one and five years, depending on risk, but it is not known how many of the patients overdue a check in the Lothians had been seen before.
Deborah Alsina, chief executive at Bowel Cancer UK, said the delays were “unacceptable”.
“People are being put at risk by these delays to surveillance colonoscopies. There needs to be a proper commitment to the recording of this information.
“People with a higher risk of bowel cancer need regular surveillance endoscopy tests to ensure the disease does not develop. Failure to do so could have devastating consequences so we urge the Scottish Government to sort this out as a priority.”
NHS Lothian has said that between 20 and 25 per cent of the 2389 overdue patients may no longer require a colonoscopy, due to “changes in patients’ circumstances” and updated national guidance.
The 46 patients who should have been seen in 2008 have all now been given appointments, while many of the 283 waiting since 2009 have also been handed dates.
A further 436 patients who were due to have the bowel examination in 2010 are still waiting, while 702 were due to be checked last year but are yet to be given an appointment.
Patients on the surveillance list may have been treated for bowel cancer in the past, have had another medical condition linked to the disease, had polyps or potentially cancerous growths removed or have a family history of the condition.
It is understood that previously, patients with symptoms who needed colonoscopies had been prioritised by NHS Lothian.
Margaret Watt, chairwoman of the Scotland Patients Association, accused NHS Lothian of failing its patients and said the delays could have catastrophic implications for those awaiting a colonoscopy.
She said: “These checks are of paramount importance to people’s lives. By the time people get them, it could be too late.
“They can apologise, but that’s no good if the patient dies because they had bowel cancer and it wasn’t found in time. Don’t say sorry over a person’s grave.”
Vicky Crichton, Cancer Research UK’s public affairs manager for Scotland, said: “It is worrying that people who have been identified as having a high risk of developing bowel cancer are not receiving this important surveillance check within the agreed timescales.
“There needs to be sufficient capacity within endoscopy services to ensure that no further delays occur for these patients, while at the same time maintaining the service available for anyone who is displaying symptoms of bowel cancer and those referred from the bowel cancer screening programme.
“Bowel cancer is the third most common cancer in Scotland, but we know that if caught early it is very treatable, which is why screening and surveillance checks like these are very important indeed.”
Scottish Conservative health spokesman Jackson Carlaw said that people across the Lothians would be “stunned” by the length of the delays.
He said: “If waiting lists are routinely slipping there will be an inevitable risk to lives, especially when you have dozens of people who should have been checked four years ago, and scores more three years ago. For NHS Lothian to be this far behind is wholly unacceptable, and they should explain why this was, and what they intend to do about it without delay.”
Labour Lothians MSP Sarah Boyack added: “The fact that over 300 patients are more than three years overdue for their latest check-up is hugely concerning and makes a mockery of the Scottish Government’s ambition to detect these cancers early.
“Yet again we have an example where NHS Lothian are saying that there is simply not the capacity to deal with a given situation.”
Speaking at a meeting of NHS Lothian’s board this week, Mr Davison said demand for endoscopies had trebled in recent years and would continue to rise, before admitting investment was still insufficient in endoscopy within Lothian.
The Scottish Government has said it has established a national diagnostics group to tackle the growing demand for endoscopy and has pledged £11 million between 2012 and 2014 for increasing capacity in diagnostics departments across Scotland. Dr David Farquharson, NHS Lothian’s medical director, said the number of overdue patients was “clearly a cause of concern” at the board meeting this week.
He later added: “I would like to reiterate our apology to all patients who are affected by waiting times issues and reassure them that we are doing everything possible to ensure they are treated as swiftly as possible.
“Patients who are awaiting surveillance endoscopies will be assessed and if they remain a priority they will be contacted as soon as is possible to arrange an appointment for this vital service.
“We have put measures in place to ensure that this kind of delay does not go unreported in the future and we are investigating to ensure that no other services and patients are affected in the same way.”
Third most common form of cancer in scotland
AFTER breast and lung cancer, bowel is the most common form of cancer in Scotland.
In Lothian, 543 people were diagnosed with bowel cancer in 2010, out of nearly 4000 nationwide.
It is sometimes referred to as colon cancer or colorectal cancer, depending on where in the body it starts.
The disease is most common in pensioners, with more than seven in ten cases occurring in over-65s, and men are at a higher risk than women.
In 2008, a screening programme was launched for all 50 to 74-year-olds, who are asked to submit stool samples which are tested for signs of the condition.
They are then called in for a colonoscopy if there are concerns they may have cancer.
These patients were not among those on the list of overdue patients, who were part of the separate “surveillance” programme.
Only those with an increased risk of the disease are placed on the separate surveillance programme, in which they should be given regular colonoscopies.
The colonoscopies are intended to catch the cancer in its earliest stages.
If it is successfully diagnosed, the chance of living for five years is 90 per cent, and a complete cure is normally possible.
But if detected at its most advanced stage, only six per cent will live for five years and the disease is likely to kill the patient.
The condition can be treated with surgery, chemotherapy, radiotherapy or biological therapy.
Bee Gee Robin Gibb, pictured above right, passed away earlier this year from the condition.
Other well-known figures to have suffered bowel cancer include Pope John Paul II, pictured bottom right, former Prime Minister Harold Wilson and former American President Ronald Reagan.
Without the test, I’d not have known
FORMER Liberal Democrat frontbencher and MP for Edinburgh West John Barrett knows the importance of colonoscopies all too well.
He believes if he had not been examined last year, he would still be oblivious to the tumour in his colon.
Instead, he had surgery to remove the growth, completed chemotherapy, and was given the all-clear at the Western General Hospital yesterday.
He received the examination after he completed a test sent in the post – although he may now be one of the patients placed on surveillance for at-risk patients that has been hit by such delays.
He said: “If it wasn’t for the colonoscopy I wouldn’t have known I had a tumour and I wouldn’t have had surgery or chemotherapy.
“Had I been on that list waiting, the tumour would have been growing and could potentially have spread to other organs. It could have proved fatal.
“It must be very worrying for the people who are waiting, and frustrating for the staff at the hospitals, who are brilliant.”
Mr Barrett’s daughter, Sarah Atsa, aims to complete the Bupa Great Edinburgh Run next month in aid of Macmillan Cancer Support, following her dad’s battle.
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