The context of this talk is really looking at how do we support people who have inoperable lung cancer, so people who have more advanced disease than people who are eligible for surgery, how do we support these people to live well and to be able to manage the symptoms that are really prevalent for people with lung cancer. Pain, breathlessness, weight loss, fatigue, they are issues that, irrespective of how well people may respond to treatment, have a phenomenal impact on their quality of life.

So the self-management talk that I’ll be addressing with the audience later on is about how do we offer people with lung cancer enough advice and proactive support so that they can not only keep themselves well while they’re away from hospital but how do they know, what are the signs and symptoms that trigger the need in them to contact another health professional and what are the things that they can manage themselves? So this intervention, this conversation, is multimodal because it occurs in the context of a broader study that is looking at introducing exercise as a way of promoting health and wellbeing and function in people with lung cancer. It’s an interesting study because we know from a large growing body of international research that exercise has a phenomenal impact on cancer patients’ quality of life, their physical ability, it reduces anxiety and depression, reduces fatigue and we’re beginning to see some growing data that suggests it actually helps people live longer. But for people who have lung cancer, who are very tired, who are often very short of breath, the ability to maintain physical activity – walking, cycling, swimming, whatever it is they like doing – requires a really proactive approach around some of the symptoms that may make it hard for them to stick with an exercise intervention.

The supportive care intervention on self-management is a proactive call that a specialist cancer nurse makes out to patients who are on the trial, the exercise trial, and talks to them about what symptoms are they having, what have they done to try and manage them, what might they want to try that they haven’t tried? Or, very importantly, to flag with people early on and say, ‘I think you need to go and see your GP,’ or indeed, ‘That sounds to me like something you need to come back into the specialist centre for.’

Part of the study really was about saying with the shift, not just here in Ireland but internationally to move cancer care largely to the community from the hospital base, what kinds of systems and models of care do we need in place for people to feel safe, to be able to manage and experience their symptoms and their treatments for cancer at home, particularly people for lung cancer who we know are one of the largest groups of cancers anywhere in the world but also continue to have very poor outcomes. How do we make those people feel safe to be able to go home and manage at home? This proactive symptom management approach, this nurse phoning out, is giving us incredible data where people are saying, ‘I just knew she was going to phone. It’s just been fantastic. I don’t have to worry. I don’t have to think that I’m going to bother the doctor. I save my questions up for her, she can answer everything I need.’ So we’re really beginning to get an understanding of what might be the kinds of really cost effective models that we can put in place if we’re serious about shifting care to the community.

How do you think we will see things change over the years?

The issue of how we change to look after people with lung cancer in this context, but in many, many cancers, is we can’t continue to try and look after people in the way that we do already. Sadly there are more and more of us being diagnosed with cancer because more of us are living longer and cancer is largely a disease of older age. So what we know is that if we continue to structure care, cancer care, in the way that we do now it will become financially unsustainable, it will become a system whereby everybody gets the lowest common denominator and we won’t be delivering care according to who has the greatest need and who has the greatest need to benefit from the care that we deliver.

So through this kind of study where we’re trialling different models of supporting people with their symptom management at home, what we’re learning is how do we do this well, how do we do this in a way where people who are relatively well and may need the odd call from a nurse or have a helpline, the cancer services helpline, that they may want to call to ask for advice, how do we identify and target that group? How do we identify people like the people in the lung study who need more support but are well and are managing well at home? Who are those people who really need intensive support to be able to either look after them in hospital or to look after them well in the community? So what we will see change fairly rapidly over the next two years, if not less, is how we begin to configure care and how we understand that a specialist cancer nurse with qualifications and knowledge and experience is actually cost-effective because what they do, they keep people feeling well which keeps people out of hospital, which keeps people in their work, which keeps people at home, and means that our acute services that are under such pressure are actually left free for those people who really need to be in hospital. So the worrying scenario that we see around cheaper workforce, whether that’s nurses or anybody else, is better, is actually a real threat to how we move forward for really high quality and equitable healthcare.