Supporting the

Neuroendocrine Cancer Community

Neuroendocrine Cancer & Mental Health – Open Conversations Campaign

On Monday 10th October 2022 (World Mental Health Day), Rareminds and Neuroendocrine Cancer UK launched a campaign to highlight the need for greater understanding of the psychosocial and emotional impact faced by Neuroendocrine Cancer patients and carers compared with the ‘common’ cancer population, and to address the additional psychological challenges which come with such a diagnosis.

We have produced an ‘Open Conversations: Neuroendocrine Cancer and Mental Health report’ to raise awareness of these issues and encourage everyone, in particular Healthcare Professionals, to have more ‘open’ conversations with their patients about their emotional wellbeing and mental health.

I’m so tired of living with this, always feeling unwell, dreading injections and tests. I was beginning to feel I should just opt out. I couldn’t say that to anyone, but the nurse asked how I was managing ‘in myself’ and I told her. She really listened and took me seriously, she didn’t just fob me off.

Patient: MIND The Gap Survey (2018)

How the Open Conversations report can help provide a valuable insight into the additional, often unrecognised psychological challenges faced by Neuroendocrine Cancer patients 

Patients with a rare or less common cancer find themselves at a disadvantage, from the speed of diagnosis through to treatment and research. In 2017, a global patient-reported study (Singh et al., 2017) established that approximately two-thirds of patients feel that their neuroendocrine cancer affects their emotional health, with many patients living with a significant degree of emotional distress. This has been attributed to:

  • Delays in diagnosis and misdiagnosis as symptoms may mask or mimic more common conditions such as IBS, asthma and menopause. 
  • Anxiety and depression linked to the unpredictability of having a rare disease and lack of information about the condition and its management. 
  • Experiencing a range of difficulties or barriers in attempting to access psychological and emotional support due to the rare / uncommon nature of neuroendocrine cancer. These include:
    • Fear of being misunderstood as a result of low disease awareness by both medical and mental health care professionals; 
    • Anxiety about perpetuating an idea that their illness is ‘all in their mind’; 
    • Reluctance to access hospice or cancer counselling services because of their association with end-of-life care or a treatment/survivorship model that is less applicable to neuroendocrine cancers. 
    • Long waiting lists, or not being offered a preferred counselling approach and difficulty in attending further appointments ‘in person’ when the number of medical appointments may already be high.

I feel that my NETs is viewed as an insignificant disease by the medical profession and others. I was told to go away and enjoy life. And feel that I should be grateful that my disease is not imminently life threatening.

Neuroendocrine Cancer Patient

Campaign Aims & Objectives

Recognise

that the psychological burden of Neuroendocrine Cancer as a lived with incurable cancer is high.

Encourage

more open conversations between patients and HCPs, reinforcing the value of good relationships.

Raise awareness

of the emotional challenges & additional burdens that Neuroendocrine Cancer patients face.

Provide support

and useful and immediate advice for patients and healthcare professionals.

Support for Healthcare Professionals

To fully understand the psychosocial and emotional impact faced by Neuroendocrine Cancer patients and carers, our Open Conversations report identifies seven overarching themes:
 

  1. The challenge of living with a disease often referred to as ‘treatable not curable’ and how to manage the emotional (and practical) burden of that over time.
  2. The high disease burden of a diagnosis. Time spent managing diet, time off work to attend appointments or reduction in working hours/commitments, and consequential financial impact, all leads to emotional and physical exhaustion.
  3. Low disease awareness. Many Neuroendocrine Cancer patients ‘look well’ which can mean the severity of their disease (including its emotional impact and psychological burden) is much less apparent, eliciting less social support and sympathy.
  4. The complex physical-emotional interface of Neuroendocrine Cancer: how to interpret low mood or anxiety; living with the disease and menopause; uncertainty over the mental and physical impact of the disease versus other health factors.
  5. Managing uncertainty: macro and micro uncertainties brought on by the disease have consequential impact on employment, psychological health and wellbeing, personal relationships and quality of life.
  6. Having a good relationship with at least one HCP seems to have a protective mental health function for patients. However, trust in HCPs can initially be low, especially if there has been a delayed diagnosis or misdiagnosis.
  7. The challenge of accessing psychological support for patients, carers and HCPs. Over 80% of NCUK CaPs clients indicated they had not been offered counselling via their GP or hospital.

    Open Conversations

    The Open Conversations report lists the range of provisions involved in providing mental health support to Neuroendocrine Cancer patients and families. These include:

    u
    Sensitive enquiry, asking: ‘How are you feeling in yourself?’
    Good care coordination
    Helping patients navigate complex hospital systems
    Greater integration of mental Healthcare Professionals into MDTs
    Signposting to patient organisations such as Neuroendocrine Cancer UK
    Access to generic mental health and / or cancer related services such as Macmillan, and MIND.
    Access to specialist counselling/psychotherapy or psychology services, preferably with at least some awareness of the particular psychological challenges of this group of patients.

    Free Training

    Both the NCUK Academy and Medics4Rare Diseases provide free, online training for nurses and doctors respectively on diagnosing and supporting patients and families impacted by rare diseases for which they will receive CPD points and certification.

    In the Neuroendocrine Cancer UK, MIND The Gap Survey (2018), 84% of Neuroendocrine Cancer patients and carers had not been asked about how they felt emotionally about their diagnosis, 62% stated they were ‘rarely’ or ‘never’ asked about their emotional wellbeing at appointments, and 42% believed their emotional wellbeing was ‘not at all’ acknowledged by their healthcare team.
    Neuroendocrine Cancer UK, 2018

    The incidence, rise and presentation of Neuroendocrine Cancers

    • Neuroendocrine Cancers account for less than 2% of all cancers reported, but over the last 2 decades, this incidence has risen exponentially – 371% compared to 116% increase seen across all cancers (White et al., 2021).
    • The diverse distribution of neuroendocrine cells throughout the body means that neuroendocrine cancers can occur almost anywhere.
    • They range from well-differentiated neuroendocrine tumours (NETs) to poorly differentiated carcinomas (NECs, small- and large-cell type) (Rindi et al., 2018). Grade 3 (G3) NECs can be highly aggressive, resulting in widespread metastases and poor prognosis (Berner et al., 2020).
    • A non-functional neuroendocrine cancer is where the capability to release excess hormones remains unchanged; a functional neuroendocrine cancer is where this capability has become corrupted and excess hormone or bioactive substances are released.
    • The majority of these cancers are non-functional; consequently the presentation may be incidental or related to mass effect or metastatic disease.
    • Neuroendocrine cancer sits at the interface of rare/uncommon diseases, cancer, and chronic diseases, all of which present psychosocial challenges.

    Support for Patients

    A diagnosis of cancer is one of the greatest challenges anyone can face. Being diagnosed with a rare or uncommon cancer can have additional consequences, not least in terms of awareness, early diagnosis and access to expertise. Feelings of  isolation, fear, uncertainty and anxiety are not uncommon.

    Neuroendocrine Cancer UK exists to address the unmet needs voiced by the Neuroendocrine Cancer community, to support patients and their loved ones with the physical and psychological burden of Neuroendocrine cancers.

    We hope that this campaign will reassure you that we understand and recognise the additional burdens and that we are working with healthcare professionals to provide support and raise awareness of these burdens.

    We have a range of services that we provide, free of charge, including:

    A dedicated Neuroendocrine Cancer helpline

    A free counselling service

    Local Neuroendocrine Cancer ‘Natter’ support groups
    Online support groups
    My NETs mobile app.

    Resources for Neuroendocrine patients and family members

    When you, or a member of your family, are diagnosed with a cancer, it’s not unusual to feel anxious, worried or frightened. If you have had a long journey to your diagnosis you might also feel angry or relieved. If it’s come as surprise, you might feel shocked or in disbelief. You might not know what you feel, or just feel ‘numb’. There is no right or wrong way to feel.

    If you would find it helpful, or are struggling with anxiety, worry, or low mood, consider talking with someone you trust. This might be a friend, family member, employer, your GP, or a healthcare professional. The organisations listed below are here to support you whenever you are ready.
     

    • Neuroendocrine Cancer UKTalk to us
    • Association for Multiple Endocrine Disorders (AMEND) is a support organisation for UK based patients, carers, and professionals affected by (or involved in the care of) those diagnosed with rare genetic conditions that increase the risk of developing neuroendocrine cancer.
    • Macmillan
    • Carers UK – for those supporting loved ones with cancer
    • Trekstock – for young adults with cancer
    • Maggie’s – Maggie’s offers the best possible support free to anyone with cancer and their families who walk through our doors. You’ll find our centres alongside NHS hospitals and we can also support you online

    General Mental Health & Wellbeing

    We have listed some general organisations below for both self-help and supported (professional) help.

    Emergency Support

    Mental health is everyone’s responsibility. It is crucial that the unique psychosocial and emotional challenges of living with neuroendocrine cancer are recognised and addressed as part of good practice and routine care, and that access to a broad range of psychosocial support according to patient need and preference is indicated.

    The Open Conversations report is not the product of a formal research study but is intended to share some of the observations and findings made by Neuroendocrine Cancer UK’s counsellors; Rareminds, from the last 4.5 years.

    The report focuses on providing a greater understanding of the psychosocial and emotional impact of living with Neuroendocrine Cancer and makes recommendations to all healthcare professionals who work with these patients to provide them with the best possible understanding and care to improve their daily lives.

    This report is illustrated with anonymised quotes primarily from those who have used the NCUK Counselling and Psychotherapy Service, and from the NCUK MIND the Gap Survey (2018). We are extremely grateful to all NCUK patients and family members who have given their kind permission for their experiences to be shared in this report. This Report is dedicated to them

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