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Susie Long’s legacy lives on, seven years on

Posted in colonoscopy, diagnostics, Irish Cancer Society, Joe Duffy, Susie Long, unequal access by saraburke on December 4, 2014

My column from the Medical Independent on 4 December 2014 on unequal access to essential diagnostics

Seven years after her death, a brand day care unit opened last month in St Luke’s Hospital in Kilkenny, funded in her name and honour by the Susie Long Hospice Fund. In the same month, GP Edel McGinnity expressed concern about one of her patients who had to wait eight months for an essential scan to diagnose kidney cancer.

It’s eight years since Susie Long came to national prominence when she spoke so eloquently on the Joe Duffy show about having to wait seven months for colonoscopy. Her long wait resulted in a late cancer diagnosis which contributed to her early death, 18 months later.

Susie Long wrote a powerful email to Joe Duffy entitled “I am going to die because of hospital waiting lists,” the night after she sat beside a man who was also receiving treatment for the same cancer. But because he had health insurance, he was able to get a scan privately within three days. Because she was a public patient, she had to wait seven months — months that proved fatal.

In her remaining time to live, Susie Long campaigned for equal access to healthcare, no matter what one’s insurance status. Her legacy lives on, most obviously in the new day unit in Kilkenny, but Susie’s advocacy also had a more immediate impact. Her very courageous, honest testimony, combined with a series of cancer misdiagnosis scandals in 2008, prompted a complete overhaul of the cancer control programme.

Under the capable stewardship of Tom Keane, with the political support of then Minister Mary Harney and a ring-fenced budget, Irish cancer services have been transformed from being among the worst in high-income countries to now being among the best. One of the many things that changed was setting a maximum four-week wait-time for urgent colonoscopies. This was to ensure that no-one would wait like Susie Long had to.

Dr Edel McGinnity was speaking in early November at the launch of the Irish Cancer Society’s new research, which shows that people living in Blakestown in North West Dublin are three times more likely to die from cancer than those in nearby wealthier Castleknock. Socio-economic inequalities in health and death are not new. What is new from this work is the small area of analysis as well as the disclosure that some Irish citizens are still waiting months for essential tests, such as scans and colonoscopies. Even when a cancer diagnosis is a possibility.

Poor people are more likely to have poorer health and shorter lives. It is estimated that about 40 per cent of this is caused by lifestyle factors such as smoking, overweight, poor nutrition, lack of exercise and alcohol consumption. These lifestyle factors are directly and indirectly contributed to by the unequal distribution of income and wealth; by living in poverty, poor physical environments and housing; through bad educational outcomes; and the stresses of trying to make ends meet (known in the literature as the ‘psychosocial factors’).

Access to essential health services is not the main cause of health inequalities but it can be critical and is dependent on access to good diagnostics. While the poorest people in Ireland have access to their GP without charge, they often present with symptoms at a later stage when they are faced with the ‘choice’ of long waits for a public hospital appointment or paying privately to access crucial diagnostic tests. Tom Keane, and more recently Susan O’Reilly, have done an excellent job transforming cancer care, however they had no control over diagnosis services, which are beyond their remit.

To give the HSE credit, it is 100 per cent compliant in meeting the four-week wait-time target for ‘urgent colonoscopies’. But the problem is with the non-urgent wait-times; it is the 13-week wait target for non-urgent colonoscopies. Figures released to the Medical Independent by the HSE reveal that in January 2013, 367 (8 per cent) of all colonscopy waiters were waiting longer than 13 weeks, whereas by August 2014, 2,276 (36 per cent) of all colonscopy waiters were waiting longer than 13 weeks. This represents a six-fold increase in people waiting over 13 weeks for a colonoscopy in just 20 months. Other countries have a four- and six-week wait-time for colonoscopies, with no distinction between ‘urgent’ and ‘non-urgent’.

These long waits for diagnostics were also found in research carried out last year by the ICGP. This found that just 57 per cent of GPs had direct access to diagnostics and of those with direct access, their private patients had to wait on average 12 days for a colonoscopy, 5.5 days for an abdominal CT scan and four days for abdominal ultrasound. The average wait times for public patients, however, was 10 weeks for a colonoscopy, abdominal CT scan and abdominal ultrasounds. Some public patients have to wait as long as six-to-eight months to access these services.

Surely seven years after Susie Long’s death, the continuing inequalities in access to diagnostics and therefore hospital care are totally unacceptable and need to be addressed immediately.

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