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Neuroendocrine Cancer Community

NET Patient Foundation attends British Psychosocial Oncology Society Conference

Mar 25, 2019

Who we are, how we see ourselves – how we feel and think about our selves, our relationships, our community, and the world at large – all influence how we interact, involve and respond to ourselves, others and life’s events. 

How we think and feel is often influenced by our memories, experiences, relationships, beliefs, as well as our hopes and expectations for, and concerns about, the future.

Psycho-oncology is the area of medicine and academia that focusses on the psychological, social and behavioural aspects of cancer, that is, all of the above!

At the end of last month, the NET Patient Foundation attended the annual BPOS conference in Chester. 

BPOS is the British Psychosocial Oncology Society and was founded in 1983, with the aim to advance and promote knowledge of psychosocial oncology. The Society works with those who have been diagnosed with cancer, their families, friends and the professionals who care for them.

Dr Alex King, Consultant Clinical Psychologist at Imperial, opened the conference with an interesting and somewhat provocative talk on addressing the issue of staff education: challenging  assumptions and ‘short-term’ initiatives, such as 2 and 3 day “communication” courses. 

Two key issues highlighted:

  • length and depth of educational courses for the ‘cancer workforce”
  • assumptions made about “what patients want” from the healthcare professionals they see

Points made:

  • for healthcare professionals to have a coherent understanding and knowledge of all psycho-oncological aspects – they need the specific knowledge and skills acquisition that cannot be gained over a few days. They need a dedicated, embedded resource available at all levels of training – courses less than 50 days, may improve practitioner confidence but have little impact on improved patient experience and outcomes
  • Never underestimate the “small stuff” and its impact on establishing trust and rapport – “Doing things quickly, safely and getting everything right from the beginning (when booking appointments and organising tests/scans before the point of diagnosis) affirms the patient’s trust in the healthcare system, which is important for relational safety*”
  • Gauge and utilise self-efficacy – the belief an individual  has in their own abilities, specifically their ability to meet the challenges ahead of them and complete a task successfully (Akhtar, 2008) – It can feel uncomfortable to not jump in to solve someone’s distress but is often more helpful to encourage and allow them to use/explore their own coping mechanisms and ask “what do you need from me?”
  • Anxiety and depression may be seen as a ‘normal’ response to a cancer diagnosis but by definition these are not ‘normal’ health states, therefore do need to be identified early and accurately and supported appropriately
  • New model of looking at impact of cancer diagnosis – ARC: Adversity, Restoration and Compatibility – where Adversity is “realising cancer”  and the impact of diagnosis, Restoration is “readjusting life with cancer” – knowledge, experience gained and adjustments to life and Compatibility is “reconciling cancer” 

Further reading: Clair LeBoutillier et al (2019) Psycho-oncology: Conceptual framework for living with and beyond cancer: A systematic review and narrative synthesis 

Other highlights:

Lucy Johnson: More than a hanky and a leaflet: what really matters to people with cancer?

  • Budget prescription: Feeling Good Plan
  • What does a good day look like for me (and my loved ones)?
  • What does a bad day look like…
  • What would the best day look like?
  • If given £250 I would want to use it to…
  • What difference would this make to me 

Lesley Howells (Maggies Centres) highlighted the importance of acknowledging concerns around progression and recurrence, especially in cancers that have an increased likelihood of this occurring and the use of CBT (Cognitive Behavioural Therapy) in addressing these concerns. #fearofrecurrence

Second primary diagnosis: “lightning can strike twice” – a discussion about the preparedness of both patients and primary care physicians: focus tends to be on risk/fear of recurrence or progression with low awareness or suspicion of possibility of a second primary.

nb hence recommendation to take up national screening programmes as offered – your surveillance/monitoring scan may be the best for your known cancer but may not be the best for checking for others – discuss with your healthcare team before declining screening.

NCRI Keynote talk on Patient Reported Outcomes Measurement (PROMS): To survive and thrive is to live.

 This represents the changing focus from simply adding years to life to including quality of life: 

  • Overall 10 year cancer survival in the UK is 50% 
  • Currently  2.5million living with or beyond cancer : 1 in 4 living with adverse effects (of either the cancer and/or its treatment)
  • PROMS aims to improve effective interactions (promote “relational safety”*), monitor change, promote early intervention, measure outcomes and identify needs
  • But these will only truly reflect the patient if they are involved (not just engaged – actively involved) in ensuring measurements are patient relevant – preferably patient created. 

Click here for further information about the Society and their work.

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