Supporting the

Neuroendocrine Cancer Community

Spotlight on Neuroendocrine Cancer

What is Spotlight on Neuroendocrine Cancer? 

Spotlight on Neuroendocrine cancer is our new campaign to support Healthcare Professionals (HCPs).  

We want to use Spotlight on Neuroendocrine Cancer (NC) to support non-NC specialist HCPs by increasing awareness of this complex cancer and providing bite-size and relevant education about NC, ultimately to improve the patient experience.  This education will include what Neuroendocrine Cancer is, clinical presentation, symptoms and common differentials to look out for, useful investigations to diagnose NC and the psychosocial impact and how to support patients with this aspect of the disease.  

We want all Neuroendocrine Cancer patients to be able to access the same, all-inclusive, joined-up care – to see the right person at the right place and at the right time.

Current challenges in Neuroendocrine Cancer care:

  • Neuroendocrine Cancers are complex. As an umbrella group they are uncommon, although some types are rare. Many HCPs have a low awareness of this cancer type and will not see many patients with it.
  • NC can be hard to identify because the symptoms are vague and varied and can be mistaken for more common conditions such as IBS, asthma and the menopause.
  • Historically there has been no clear pathway for Neuroendocrine Cancers making the diagnostic pathway difficult for many.
  • Few HCPs and patients suspect symptoms are due to cancer which can lead to delays and misdiagnosis for patients (as found in our ‘Barriers to diagnosis’ survey).
  • Delays to diagnosis impacts treatment and management options for NC patients.
  • There are inequalities in how Neuroendocrine Cancer patients are being treated depending on where in the UK they live, despite the expert multidisciplinary teams in existence across the country.

Objectives of Spotlight on Neuroendocrine Cancer

  1. To raise awareness and knowledge about NC among non-NC specialist HCPs, commissioners (who are responsible for planning and prioritising health services locally) and policy makers (those who define specific healthcare goals for the UK). In the first year we will focus on Gastroenterologists & General Surgeons, GPs and Clinical Nurse Specialists. Our vision is a world in which people know how to recognise, diagnose, treat, care for, and ultimately, cure patients with Neuroendocrine Cancer.
  2. To achieve more equal and equitable care we are working to ensure that NC is included in national cancer plans and has its own dedicated NC Care pathway integrated into the NHS system.
  3. To empower patients to feel more in control of the management and treatment of their disease and support them to work with their healthcare team, to be at the heart of the decision-making process and to ensure prioritisation of what matters most to them.

Spotlight on Neuroendocrine Cancer Achievements

  • This campaign was created at the end of 2022 after collaboration with NC-specialist and non-NC specialist HCPs to understand how we could best raise awareness and support in a way that is relevant for them.
  • We have worked closely with HCPs to develop a practical overview of Neuroendocrine Cancer to support HCPs to recognise and consider NC as a potential diagnosis. We have also created a practical overview specifically aimed at supporting General Practice.
  • We have worked with the Primary Care Society of Gastroenterology to deliver an educational talk on Neuroendocrine Cancer to support GPs on how to recognise the disease.
  • Additional materials that have been developed for GPs include an early symptoms awareness card and training modules that were developed with the Royal College of GPs to target the issues around late and misdiagnosis, and provide useful information around symptoms, diagnosis and referrals into expertise.
  • Other educational initiatives we have include the Neuroendocrine Cancer Nurse Competencies for the UK, (endorsed by the Royal College of Nursing to ensure the right skill set is obtained by nurses caring for people affected by NC) and the NCUK training academy which is an educational website for nurses and allied HCPs. We will continue to develop the NCUK academy.

Spotlight on Neuroendocrine Cancer 2023 Plans

  • We will continue to collaborate closely with HCPs to deliver relevant NC information to support the diagnosis of NC.
  • We will develop a new HCP dedicated website.
  • We are developing the first national NC care pathway to help HCPs diagnose and manage their patients and ensure that all patients across England are treated in the same and optimal way. We are working with HCPs, patients, NHS England, Industry and policy makers on this to make sure it is fit for purpose for those who will use it when it is launched in 2023. It will provide a framework for the ideal management pathway of a patient with NC which will make the journey easier and better for both HCPs and patients.
  • We have collaborated with a number of GP organisations who will deliver more topline, practical education via different platforms to a wider GP audience in 2023.  
  • We will hold top line educational meetings that support non-NC specialist Gastroenterologists, General Surgeons and Clinical Nurse Specialists (other HCP specialities will be supported in following years). 

If you would like to make a donation to support us with this campaign, we would be very happy to discuss this further.

*Spotlight on Neuroendocrine Cancer is an amalgamation and re-branding of 2 historic campaigns: Bridging the Gap & Mind the Gap. Bridging the Gap addressed the gap that unfortunately exists for some between how Neuroendocrine Cancer is currently managed and how it could be more optimally and consistently managed. Mind the Gap was our campaign to support patients to navigate the psychological burden of Neuroendocrine Cancer.  By bringing these campaigns together, we have simplified our support offerings for Healthcare Professionals and continue to support patients with the psychological burden of NC through our support team. 

Where would you like to visit next?

Select the image to learn more.

Symptoms

Tests

Newly diagnosed

Treatments

Your cancer site

What is Neuroendocrine Cancer?

Living with Neuroendocrine Cancer

How we can support you

NC research and our campaign work

End of life care