Supporting the

Neuroendocrine Cancer Community

With Catherine Bouvier, CEO Neuroendocrine Cancer UK

Clare: Hi Cathy, Happy New Year to you. Here’s hoping this year’s a good one! You had such a busy year last year, can you tell us some of the highlights?

Cathy – Hi Clare, Happy New Year to you too! It was quite a big year last year; some of which was planned and other activities that were born out of opportunity.  For me, the biggest highlight was the sense of solidarity that I saw within the community. The care and support shown at the 200 plus ‘natter’ support group meetings our support service held with help from facilitators to the amazing fundraising activities that took place to strengthen and increase our research fund – we were able to fund four important research projects which is a doubling of our research investment. Thanks to everyone who helped. This is an ongoing programme, and we want to really drive neuroendocrine cancer research now and in the future.

This coming together was of course most noticeable on World Neuroendocrine Cancer Day – a day to all speak with one voice – it is special to be part of a global team! Another highlight was the development of the first-of-its-kind neuroendocrine cancer pathway for gastrointestinal (GI) and lung neuroendocrine cancers. Again, this was achieved through collaboration, and I truly believe this is the most power we have – as one! We are now working to get this pathway integrated into NHS early diagnosis cancer diagnosis pathways and other relevant NHS rare and less common cancer initiatives. The work achieved by the campaign and marketing team has been so pivotal in raising awareness of neuroendocrine cancer amongst non-neuroendocrine experts and the work with certain GP bodies has been fantastic. We ended the year knowing that we had raised awareness of this cancer type to around 45,000 GPs. There have been many highlights with so many people to thank and many of these, along with the thanks, are in our Dec 2023 newsletter, but I do have to mention the virtual handbook.

Our support service lead Nikie and a contracted colleague Beth did an amazing piece of work to develop an interactive, accessible guide to living with neuroendocrine cancer which is now available to all at no cost. It contains all you need to know and believe has struck a great balance between the science and the reality of being affected by neuroendocrine cancer. I really hope our community find this an invaluable resource.

 

Clare – It was also the 21st anniversary of Neuroendocrine Cancer UK. Can you tell us about some of the achievements and activities over the years?

Cathy – One achievement that struck me was the fact that we are still here. It is so challenging in the third sector now; more demand, less resources, and a healthcare system that is struggling. We want to remain the same service organisation that we were set up to be and certainly do not want to be another barrier to care and support, but finding not only cost-effective but better ways to do this keeps those grey cells buzzing! In terms of achievements, the development of the first-of-its-kind neuroendocrine cancer pathway for GI and lung neuroendocrine cancers is up there.

Clare – Twenty-one years of supporting the neuroendocrine cancer community is fantastic, for those of us new to the community, can you tell us where you first began, and what it is that you do?

Cathy – I cannot say that I have been here in my current role for all those years, my beginning was different from where I am now. I started after joining forces with a couple of amazing people with neuroendocrine cancer who were looking to expand and develop a support group that was already up and running at the Royal Free Hospital (where I was working as a specialist nurse). I did what I could to help drive this imitative forward. We developed and expanded an organisation that could support people from around the UK and it was called The NET Patient Foundation. The support we offered was a helpline and a website, and that got busy very quickly! It only confounded our belief that people felt isolated and alone with a lack of information and community. What I did then and what I do now is very similar – advocate for the best care and outcomes for anyone diagnosed with neuroendocrine cancer.  It is just a little busier, and more complicated now! 🙂

Clare – Although increasing in incidence, neuroendocrine cancer is still considered a lesser-known cancer. Can you share with us some of the frustrations and challenges the organisation faces, and how you endeavour to tackle them?

Cathy – Oh Clare, where do I start? I think I could write a book on this topic. My biggest frustration is that in a way we still need to exist because we still have to spell out the most obvious of basic care needs for a community that is not small, deserves better, and needs to stop hearing sentences like ‘I don’t know much about neuroendocrine cancer (we can all google where you will find thousands of articles, neuroendocrine cancer guidelines, information, and training resources), it’s good cancer (‘unbelievably unhelpful comment’) or the damaging assumptions that because someone with neuroendocrine cancer ‘looks well’ when you see them, they do not need physical or psychological help.

Clare – With such a busy and successful year last year, how do you plan to match it this year? Where do you hope to see the charity, this time in 2024?

Cathy – In summary, my aspiration for the charity is always to witness tangible improvements in awareness, research, and support services for the neuroendocrine cancer community, ultimately making a lasting and positive impact on the lives of those facing these challenging conditions.

We spend quite a bit of time in the Autumn planning for the next year. Some projects are ongoing and will continue in 2024, like the pathway project. So firstly, I would like to see the implementation of this pathway in cancer alliances and integrated care boards that have our centres of excellence in their area of care. This will be a priority.

Throughout the year we have a number of other projects running; a few examples are a new training platform for nurses, some new patient information, new podcasts, a face-to-face conference, and an exciting initiative around UK advocacy collaboration. We are working on our website, driving our campaigns (which are vital for changing the status quo), planning our summer fundraiser and developing our National Education Webinars.

I envision the charity continuing to play a pivotal role in providing comprehensive support services for patients and their families, including mental health resources, financial assistance, and educational programmes. Creating a strong sense of community and solidarity among individuals affected by neuroendocrine cancer will be crucial for fostering resilience and empowerment.

As always, my biggest hope for 2024 matches the hope I have each year – to serve our community in the most effective and caring way, our time, energy, and budgets allow.