ALK Support
This section has been informed by ALK Positive UK, a registered charity established by patients for patients. The charity provides a range of support for people living with or affected by ALK+ lung cancer, including a private online support group, regional lunches for patients and their families, advice booklets and leaflets.
Click here to visit the ALK Positive UK website.
ALKPositive.org.uk
In this video, lung cancer clinical nurse specialist Delyth McEntee speaks to Debra Montague, chair of ALK Positive UK, about how she has felt throughout her cancer journey and the support available for patients. The topics covered include:
It is very natural for patients to experience low mood or feelings of sadness or loss after a cancer diagnosis or during treatment. This page gives an insight into how cancer can make people feel: How cancer can make you feel | Coping with cancer | Cancer Research UK
Sometimes, though, it can be difficult for patients to differentiate between distressing feelings and an emotional state that might represent becoming mentally unwell. It is important to encourage your patients to share how they are feeling throughout their cancer experience, and offer support, signposting and referrals if needed.
Healthcare professionals in all areas can play a key role in supporting patients from an emotional and psychological perspective. It is important that those interacting with patients can recognise normal coping strategies and identify cognitive distress, so that they can support and signpost appropriately.
Learn more about depression: Types of mental health problems | Depression – Mind
Learn more about treatment for depression: Treatments – Mind
Learn more about anxiety and panic attacks: Anxiety and panic attacks – Mind
An example of breathing exercises from Headspace can be found here: Headspace | Mini meditation | Breathe)
An example of progressive muscle relaxation can be found here: The Christie – Relaxation
Clear, effective communication from healthcare providers is essential in building a relationship of trust and ensuring patients feel informed and confident in their medical care.
A range of resources offering guidance on communicating with patients, service users and people affected by cancer are available via the cancer communications resource hub from NHS England’s Workforce, Training and Education directorate.
Below, Neil, Gillie and Kirk share their insight on how healthcare professionals can communicate with and support their patients.
In this video Neil, a retired GP and ALK patient, shares his perspective on how healthcare professionals can best support patients. Neil discusses:
ALK+ lung cancer patients are often younger than the average lung cancer patient: the median age of patients with ALK-rearranged NSCLC is given as 50-52 (LoPiccolo et al., 2024) and many patients are much younger.
It is important to remember that when faced with a cancer diagnosis, younger patients may have additional concerns and worries such as fertility, careers, finances and caring for young children. As lung cancer is less common at a younger age, they may feel isolated and find it difficult to talk to their peers about their situation.
Listening to your patients’ concerns and encouraging them to talk is key, as well as signposting them to additional support. The ALK Positive UK charity has a regional support group and offers regional meet ups and an annual conference which could be helpful to younger patients wishing to meet others with ALK+. Supporting Patients of ALK+ Lung Cancer | ALK Positive UK
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