Look behind the scenes at LCNUK
Earlier this year, we had the pleasure of attending the first face-to-face UK Lung Cancer Nurse Conference in 2 years. The sessions were wide-ranging with excellent speakers and the joy of being with colleagues combined to generate the reactions you see in the image.
In our 2021 member’s survey, we learned that only 14% of our members come via referral from their CNS. This is a surprisingly low and disappointing figure which we know will increase following the many conversations and connections we made at the Conference.
The major takeaways from the Sessions for EGFR + patients are:
Screening
‘We measure survival & survival is dependent on early diagnosis. There is a great variation of diagnosis & treatment across the UK and we have to drive up standards.’
Screening is highly cost-effective but is dependent on risk factors such as age (55-74yrs), smoking status and family history. These criteria mean that the routine screening currently being discussed, would not be made available to most of our members. Add to this the lack of capacity in the UK re. CT scanners & workforce and you can see that we have a big problem.
GPS are our entry point to diagnosis but they are currently overwhelmed – a suggestion is to bypass the GP. Establish a network of Hotlines to bypass primary care and allow patients to self-refer for a low dose CT Scan (LDCT). In essence a Hotline, followed by a cancer concern triage and where appropriate a CT scan. A radical approach that has seen very positive results in a pilot scheme in Belgium. Early diagnosis is of huge importance to us, continues to be problematic and demands more action.
Psychological impact of a Lung Cancer Diagnosis
‘We are way behind where we should be’ ‘We need to innovate and integrate our services’
A Cancer diagnosis is life changing resulting in upset and fear. It disrupts your life story, your identity, your biography
This is a significant part of the EGFR + patient’s experience. There is often extreme shock at the diagnosis as Lung Cancer is the last thing many have considered. ‘I am young, I am fit, I have never smoked, I have no symptoms– this is not possible!’ ‘The moment I was diagnosed I was faced with who am I now?’ 85% of our members are diagnosed at stage 4 and are faced with an unexpected and terminal diagnosis.
It was noted that EGFR +patients are a distinct patient group whose needs vary from traditional Lung Cancer patients.
‘The lack of psychological preparation for diagnosis can result in more anger and confusion and therefore a greater need for help to come to terms with their situation. They often display lower satisfaction with their care, are more demanding and have higher psychological needs’.
These patients do very well, often for several years. They build strong relationships with their existing medical team and as their disease progresses they prefer to stay with them rather than transition to a local or palliative care team. 65% don’t take up palliative care early enough. ‘I am still on treatment why do I need palliative care?’ Earlier palliative care improves survival and patients are encouraged to access support locally. Especially for pain management, counselling and planning for bereavement
Psychological care is often seen as an added extra even though 25% will need emotional support in their 1st year after diagnosis. If not treated this will result in a poorer quality of life, function and adverse impact on family.
‘There is no health without mental health. Patients need an holistic, integrated physical & mental care plan’
Stigma
How might the stigma of a Lung Cancer diagnosis affect a never/non- smoker?
The 20 year campaign that smoking causes cancer has been so successful that Lung Cancer & smoking are tightly entwinned. The never/non-smoking patient strongly feels the need to explain their smoking history, whilst the residual smear of Lung Cancer being self-induced remains. ‘Stigma is at the heart of society’.
‘We are in this together’
A very moving presentation from Andrew Strauss of the Ruth Strauss Foundation.
‘’I need you to be prepared for what is to come otherwise I can’t enjoy the rest of my days on this planet.’ Ruth Strauss to her husband Andrew, following her cancer diagnosis, aged 46yrs with two children, then aged 10 & 13yrs. She had ALK+ Lung cancer and was a never smoker. She died just under 1 year later. In her memory Andrew established the Ruth Strauss foundation whose aims are to:
Provide emotional support for families to prepare for the death of a parent
Raise awareness of the need for more research & collaboration in the fight against non-smoking lung cancers.
There are 2 journeys in any cancer pathway, treatment & psychological. The former the patient navigates, the latter we go on together. Being open with each other, making memories and learning to live in the moment are tough skills to learn. Organisations like the Ruth Strauss Foundation can help.
Visit the Ruth Strauss Foundation here.