Why are Ireland’s cancer patients waiting decades for psychological care?

It wasn't a typical interview on the Late, Late Show on Friday, September 25th. The interview with Hugh Cooney was heartbreaking, his bravery staggering and his humanity deeply moving. Cooney was diagnosed with cancer two years ago and is gravely ill. He generously gave his precious time to ask people not to ignore symptoms and to seek early medical interventions. He concluded the interview by highlighting a fundraising campaign he is running in order to provide dedicated psychological care to the cancer centre in which he is treated.

Unfortunately, Cooney’s call for the provision of comprehensive psychological care to cancer patients reflects the reality of our current cancer services. A reality in which the failure to provide psychological care to cancer patients is not the exception but the norm. A reality in which our health services have failed to implement recommendations about the psychological care of cancer patients going back almost two decades.

As long ago as 1999, the National Review of Support Services of Patients with Cancer identified the lack of adequate psychological services for patients with cancer and highlighted that psychological problems, though very common, are under-recognised and undertreated. The subsequent Strategy for Cancer Control (2006) went further still, recommending that "the HSE should ensure that access to comprehensive psycho-oncology and psychosocial support is provided for cancer patients and their families in each managed care network". The National Quality Assurance Standards for Symptomatic Breast Disease Services (Hiqa, 2006) and the O'Malley Provision of Care Report (Hiqa, 2008) all support the detailed recommendations of the 2006 Strategy. Internationally, the call is the same. Guidelines from the Institute of Medicine (IOM, 2007) and National Institute for Clinical Excellence (NICE, 2004) both place comprehensive psychological care as "an integral part of quality cancer care".

There are now more than 16 years’ worth of recommendations, all saying the same thing: we need to provide comprehensive psychological services as part of our routine care of cancer patients. But without political and HSE action, such recommendations amount to little more than words on paper.

Centralising cancer care to eight specialist centres is arguably the greatest reform our oncology services have ever seen and has, most would agree, been a very positive development. While the move to centralised services was not an easy one, and the loss of local services was difficult for many, the decision was made on the basis of the evidence. The evidence in this regard was that numbers matter. The outcomes for a surgeon performing mastectomies, for example, are better if they do 100 a year as opposed to 10 a year. The numbers don’t add up Unfortunately, when it comes to the provision of psychological services for cancer patients, the numbers simply don’t add up. While we now have eight well-developed cancer centres nationally only two of these have dedicated psychological services. It means that patients’ cancer care will depend on their catchment area: a post-code lottery style of service delivery that leaves more gaps than services. These gaps exist despite long-standing international recommendations for psychological services to be part of routine oncology care, and multiple national reports calling for dedicated psychology services for cancer patients.

Such inadequate service provision means the majority of our country’s cancer patients are vulnerable to having their psychological needs mismanaged or overlooked completely. This has significant implications for cancer patients and sends a worrying message about the importance of mental health at a time when the likelihood of psychological distress is greatly increased. In failing to provide psychological services, we run the risk of communicating to our patients that such support should not even be required: this is a dangerous message to give when the evidence is that a significant portion of cancer patients require professional input in managing the psychological impact of the disease.

Undoubtedly the most vulnerable group of all in this equation are the patients who have pre-existing mental health difficulties. For this group the failure to provide dedicated psychological care may literally be a matter of life and death.

For this group the numbers are far from equal when it comes to surviving a cancer diagnosis. The reality is brutal: if you have a significant mental health problem such as schizophrenia, and you get cancer, you are twice as likely to die as someone who has the same cancer but doesn’t have schizophrenia. This injustice belongs to the dark ages. But it is the reality of life for people with significant mental health difficulties who get cancer. A reality compounded by the repeated disregard of national and international recommendations calling for psychological services for cancer patients.

Political responsibility Cooney’s brave appeal has undoubtedly moved the hearts and minds of many people, ensuring that the provision of comprehensive cancer care should not be left to patients. This responsibility rests firmly on our political and healthcare systems. It is the system that must grow and adjust to meet the needs of our patients, the many and the few; especially when it comes to our citizens with additional needs whose very lives may hang in the balance.

It is time for our political and healthcare systems to step up to this responsibility. The Department of Health is currently drafting our 2016-2025 Cancer Strategy, which is due to be presented to the Minister of Health by December. This strategy will act as the blueprint for our cancer services over the next decade. It is here that the psychological care of cancer patients needs to be firmly embedded as an integral part of quality cancer care. The new strategy needs to make explicit an implementation plan with a clearly defined time scale. This is our opportunity to provide the services that will save the lives of some of our most vulnerable citizen's; let's not waste it. Let's not pretend we didn't know. For a small investment the life of your brother, your sister, your lover, your mum, your son or daughter who has cancer could be greatly improved and even saved.

Dr Paul D'Alton is the president of the Psychological Society of Ireland and head of the department of psycho-oncology at St Vincent's University Hospital, Dublin.