Lessons from the Susie Long case

  • Niall Hunter, Editor

One of the major deficits in the Irish healthcare system is equity of access to hospital facilities.

While the standard of care is regarded as reasonably good once you get into an Irish hospital and there is a reasonable level of patient satisfaction, getting into the hospital in the first place is a major problem, particularly if you do no have private health insurance.

Being on a waiting list is certainly no joke. Thousands of patients in Ireland are currently waiting long periods either to get an initial hospital out-patient appointment or for an in-patient procedure.

For patients with some conditions, waiting for tests or treatment can involve months or even years of pain or discomfort.

However if you are waiting for an out-patient appointment for a test to outrule or confirm cancer, it could literally be a matter of life and death, as the earlier a cancer is diagnosed, the better the chances of successful treatment.

The reasons for the inequities and inefficiencies in our public hospital system are nearly as numerous as the number of patients trying to get into the system, centring on issues of resourcing, the encouragement of private pracice, outmoded working arrangements, hospital configurations, poor communication and lack of liaison between community and hospital care.

There is a never-ending debate over how best to reform the system, but one clear message has emerged from the Susie Long case - that it is unacceptable in a  supposedly civilised and wealthy country for anyone to have to join a long queue for cancer testing because they cannot afford to pay for private care. 

The Department of Health and the HSE know this, as it has been outlined starkly in recent rerports. 

According to recently-published figures from the European Consumer Health Index, Ireland is one of the two poorest performing countries in Europe when it comes to being treated quickly for cancer. 

The Department of Health and the HSE was warned in a major report last December of the need to stop  discrimination against public patients in getting access to cancer testing and treatment.

Less than a month after the report from the Irish Cancer Society (ICS) and Irish College of General Practitioners (ICGP) expressed concern about the delays being experienced by public patients in accessing cancer tests, Susie Long's case was first highlighted on RTE radio.

Susie Long died earlier this month of bowel cancer having had to wait seven months as a public patient for a colonoscopy test, and her case has led to considerable public concern over waiting times for cancer tests and treatments for those who cannot afford private care.

A major new research study on how long public patients have to wait for colonoscopy tests for bowel cancer is now to be carried out by the Irish Cancer Society.

The research report published by the ICS and the ICGP nearly a year ago stressed the need for equity of access for all patients regardless of income or insurance status to cancer care, and the report concluded that the bias in the system towards private patients getting tested earlier for suspected cancer must end.

The HSE is currently refusing to provide national figures on the length of waiting lists and waiting times for out-patient appointments in all specialties, including those dealing with cancer patients.

The ICS told irishhealth.com that it is about to commission research on the waiting times for colonoscopy in the public system; the number of gastroenterologists in Ireland compared to the European average; the outcomes/survival rates for patients with bowel cancer in comparison to the European average, and on prescribing practices in colo-rectal cancer.

The ICS/ICGP study, published last December, highlighted major barriers experienced by GPs in trying to get their patients tested as early as possible for suspected cancer in order to increase the number of patients diagnosed at an early stage and to maximise the potential for curing patients.

The survey of GPs around the country showed that the barriers identified were not confined to early diagnosis but applied to the diagnosis of cancer at any stage of the disease.

The GPs surveyed complained of long waiting lists for investigation and referral for cancer tests for patients who cannot afford to pay privately.

They also highlighted problems over lack of direct GP access to x-rays and other tests, difficulty with referral of patients to hospital services for investigations or assessment, lack of clear recommendations for cancer screening and poor communication with hospital staff.

One the basis of the findings, the ICS and the ICGP called for a nationwide public awareness campaign on early symptoms of common cancer and the benefits of early detection.

They also recommended that rapid access facilities for patients with suspected cancer should be expanded to reduce waiting times for patient assessment  and that GPs should be given better direct access to x-ray and endoscopy services in hospitals or through community-provided testing.

The research also points to the need for GPs to have agreed referral criteria and guidelines to assist them in identifying those patients who most need early referral for testing for potential cancer.

The ICS says in relation to referral for cancer testing, there is a need for clear guidelines for GPs in terms of the details to be provided in the referral letter to the hospital on the potential urgency of a particular case, and for follow-up by GPs of patients who have been referred to the hospital service.

Most importantly, the the ICS and ICGP, in their study, stressed that the 'serious inequality' in access to and waiting times for, investigation and referral for those unable to pay privately should be addressed by the Department of Health, the HSE,healthcare professionals, and the public.

In their report, the ICS and ICGP called for the current inequity of access to public hospital services between public and private patients to be eliminated.

According to the ICS,  its vision is for our cancer services to be world-class in terms of early detection through comprehensive screening programmes, scope and quality of care, treatment and support services, equity of access regardless of socio-economic group, location or ethnicity, and achieving best possible outcomes in respect of cancer survival and quality of life.

Earlier this month,one week before Susie Long's death, Health Minister Mary Harney said that if the new consultant contract is implemented, one of its benefits will be to ensure that access to public hospital diagnostic facilities will no longer be on the basis of ability to pay but on medical need.

"The patients' public or private status should be irrelevant regarding diagnosis of, for example, cancer conditions and these proposals (for a new contract) will deliver on that, " the Minister said.

This vision of a bright new future has, unfortunately, come too late for Susie Long and many patients like her. 

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