Sep 23, 2018

GLCC, World Lung and why this matters

Every hour of every day, more than 200 people are diagnosed with lung cancer. That’s nearly 5,000 a day, or 1.8 million every year.
They are the reason why the members of the Global Lung Cancer Coalition have come together – joining our efforts to improve lung cancer outcomes for every patient, no matter where in the world they live. 
Too many people still die from lung cancer. But, over the past decade, improvements have been made. Thanks to the efforts of advocates, researchers, doctors, nurses, and – most importantly patients and carers – we are slowly but surely making advances. 
As the lung cancer scientific and medical communities come together for the World Congress on Lung Cancer in Toronto, the GLCC wanted to take a look at what has changed in lung cancer. We wanted to celebrate the progress that has been made and imagine what the future of lung cancer treatment could look like. 
Partnering with the International Association for the Study of Lung Cancer (IASLC), we identified eight lung cancer experts from across the world, each from a different specialist area. We asked them what they thought had made the biggest difference for patients and what most excites them for the future. 
Over the next few days we will be publishing eight different perspectives. Today, we are starting with two GLCC members: patient advocate, Dr Jesme Fox, and specialist nurse, Vanessa Beattie.  
They will be followed by experts in pathology, pulmonary medicine, surgery, thoracic medicine, medical oncology and radiation oncology.
We hope you find their views thought-provoking and inspiring. There is much more we still need to do to improve lung cancer research, treatment and care. But we are positive that, with the efforts of the global lung cancer community, we can improve outcomes for all. 
Interview with Dr Jesme Fox, Medical Director of the Roy Castle Lung Cancer Foundation and GLCC member
 Dr Jesme Fox joined the Roy Castle Lung Cancer Foundation in 1998, having previously been a medical oncologist. She established the Foundation’s work in lung cancer patient information, support and advocacy. Much of her time is dedicated to reflecting the views of lung cancer patients on key committees and at meetings, both in the UK and abroad. She is the secretary of the Global Lung Cancer Coalition of advocacy organisations and is a former member of the International Association for the Study of Lung Cancer’s Education, Tobacco Control and Advocacy Committees.
What first motivated you to work in lung cancer advocacy?
It was the unmet need that made me want to work in lung cancer. I was originally a medical oncologist and fell into charitable work. Patients I knew got involved with the charity, and I started helping them to write patient information. Gradually, I got more and more involved. 
What is different about your role today from when you started your career?
There has been a monumental shift in pretty much all aspects of lung cancer. When I started working for the charity there was very little information and support available to patients. That has changed hugely, and the internet has helped us reach more people. 
Initially, I was solely focused on information and support for individuals. That’s still important, but now we also have an advocacy role. We advocate for improvements – whether policy change, increased funding for research, improvements in early detection and symptom awareness, or access to treatment including surgery, radiotherapy, targeted therapies and immuno-oncology. 
How have lung cancer charities and patient organisations changed?
There are far more organisations involved in lung cancer advocacy today. When the Global Lung Cancer Coalition first came together back in 2001 most of the organisations were either generic cancer organisations or respiratory focused. Lung cancer was on their agenda but not top of the list. Now there are far more of us that are truly lung cancer focused. We’ve also seen growing interest in advocacy across the world. When we started we had organisations from Canada, Italy, the United Kingdom and the United States. Now we have members from across Europe, North and South America, the Middle East and Asia. 
So the skills that we need as advocates are changing too. 
Lung cancer is different from other common cancers like breast cancer, where patients, carers and survivors lead a lot of the advocacy work. In lung cancer, professionals have often led the advocacy, because patients have often been diagnosed at an advanced stage of disease and been too poorly or not lived long enough to be able to advocate. We are seeing that changing with improvements in treatment, particularly surgery.
What do you see as the most significant challenges for advocates?
The biggest challenge will be finding a way for healthcare systems to afford to give access to advances in medicine to lung cancer patients. That’s especially true in more socialised systems, where health technology assessment is a way of life. 
We need to move with the pace of research and make sure that patients get access in a timely fashion, not only to new drugs but also to new diagnostics, surgical and radiotherapy techniques. The advances we’re seeing in lung cancer medicine are hugely exciting, but we need lung cancer patients to be able to benefit from what research tells us is the best we can do. 
For advocates, keeping up to date is also a challenge, when new techniques and are arriving all the time and the policy agenda is constantly changing. We need different skills from the ones we used historically. There’s always more to do.
What are you most excited about in your field?  
Definitely early detection and lung cancer screening. At the moment we’re looking at low dose CT, but in the future it could be biomarkers, a breath test – whatever means we can diagnose patients early enough to be able to offer curative treatment to many more people.
What role do you see international collaboration playing in advances in lung cancer treatment?
In the future, we hope to see many more people living for longer with and even beyond lung cancer. As their needs change, our support and advocacy will need to change too. For the first time at this year’s Conference we have a session on survivorship as part of the Advocacy Track. 
A multidisciplinary approach, with all the experts from across the different fields working together, is essential. We need to make sure that research moves beyond the journal and the advances and benefits are felt by real patients. 
Interview with Vanessa Beattie, Specialist Cancer Nurse, Lung Cancer Team, Aintree University Hospital, Liverpool, and GLCC member
 Following a career in thoracic medicine, Vanessa joined the Lung Cancer Team at Aintree University Hospital, Liverpool in 1999 as a Clinical Nurse Specialist. Vanessa’s interests in lung cancer and mesothelioma include improving the patient and carer experience throughout the pathway. She has previously held the positions of Thoracic Surgical Group Chair and British Thoracic Oncology Group (BTOG) Steering Committee member. She is a current member of BTOG, the International Thoracic Oncology Nursing Forum (ITONF) and the International Association for the Study of Lung Cancer (IASLC), sitting on the Nursing and Allied Health Practitioners (AHP) Group and is current chair of the National Lung Cancer Forum for Nurses (NLCFN).
What first motivated you to work in lung cancer treatment? 
When I first started working as a thoracic nurse I saw how people with lung cancer tended to be admitted very symptomatically and usually at an advanced stage. I saw the amount of distress this caused for people with lung cancer and their loved ones. To be honest, lung cancer was very much the poor relation.
Around the same time the Calman-Hine report was published, proposing a restructuring of cancer services to achieve a more equitable level of access to high levels of expertise throughout the country.
When the opportunity to work in an advanced specialist post in lung cancer came up I saw an opportunity to make a real difference to the lives of people with this condition. 
What is different about your role today from when you started your career?
⦁ The role of nursing has really evolved rapidly. From a specialist nursing point of view, nurses now have far greater autonomy and with this our case-load has also vastly increased, both as the number of referrals has risen and more people are living longer with lung cancer. Today nurses are increasingly recognised as an integral part of the multi-disciplinary team at the heart of clinical decisions. Advances in treatment are also reshaping the role of the nurses from advocating for patients, to access to new forms of treatment and supporting and monitoring patients who are actively being treated for longer. 
What have been the biggest advances in specialist nursing? 
I think the clearest advance in specialist nursing is that, as a group, nurses have a clear, strategic voice, both nationally through organisations’ like the UK’s National Lung Cancer Forum for Nurses (NLCFN), NICE, CEG; RCLCF, Macmillan, British Thoracic Society and internationally through LUCE, Global Lung Cancer Coalition (GLCC) and IASLC.  
Nurses occupy a unique position in multi-disciplinary teams. Cancer pathways can be very complex, and nurses are well-placed to ensure that patients access the most appropriate care for them. Nurses, alongside others, have helped ensure that cancer services take a more holistic view of patient needs. In the UK, this has led to interventions like the Macmillan Recovery Package holistic needs assessment, which has not only improved patient experience but outcomes too. 
I would also draw attention to the role that clinical nurse specialists have played in improving patients’ access to treatment. The UK’s National Lung Cancer Audit, and research papers such as the Opening doors to treatment study, have brought to life nurses’ unique role in supporting people with lung cancer to access treatment that might help them. 
We are constantly refining the pathway and striving to improve outcomes for people with lung cancer. From disseminating best practice through peer-reviewed resources like the NLCFN’s Good practice guide to designing guidance such as the Optimal Care Pathway for lung cancer – nurses have an important voice.
What do you see as the most significant challenges in your field?
Two of the biggest challenges facing the field are workforce capacity and the continuing constraints on resources. The role of the clinical nurse specialist is changing, case-load is rising and there are long-standing difficulties in recruitment. These forces pose a real challenge to ensuring that we do not see unacceptable variations in access to lung cancer treatments. We should all be working to ensure that people with lung cancer can access the best possible care. People should be able to access the care they need and deserve. 
What are you most excited about in your field?  
Without a doubt, I am most excited about advances in treatment. Research and trials are running at such an unbelievable pace. Thinking back to when I first started working in the field, the only available treatment options were radiotherapy, chemotherapy or palliative care. Now we have so many more options, which has opened up a realm of opportunities for people who perhaps might not have accessed treatment in the past. 
What role do you see international collaboration playing in advances in lung cancer treatment?
I think organisations like the GLCC and the IASLC are immensely important. It is truly inspiring to see clinical experts and advocates coming together from around the globe to ensure that people with lung cancer can access the best possible care and support.  Working with these organisations has also provided an important insight into the many and varied roles that nurses play around the world. This allows us to reflect on, and improve, the way that we care for and treat people with lung cancer. In sum, international collaboration is key to improving lung cancer treatment.