Supporting the

Neuroendocrine Cancer Community

When Nikie met Sally…

Dec 23, 2022

I first met Sally in 2015, not long after I started with NCUK – little did I realise, at the time, what an incredible force of nature this softly spoken lady is.

Sally is a retired computer systems analyst and lecturer living in South Wales. She was first diagnosed with Neuroendocrine Cancer in 2009, after emergency surgery and had a number of what she describes as ‘gruelling years’ before accessing the input of a Neuroendocrine Cancer specialist gastroenterologist. This she says, ‘transformed my quality of life’.

Many of you will know that Sally has generously and eloquently shared her experiences post diagnosis with our community, as a valued Ambassador, and through “any opportunity to raise awareness of this Cinderella cancer” – including her contribution to publications e.g., Cancer World, her podcasts – available through “Not just NE Cancer series” and talks at both patient and healthcare professional conferences.

One such conference was the British Gastroenterology Society in 2019, where she captured and held the attention of all, as one senior Gastroenterology Consultant later publicly commented:

“Sally Jenkins gave a powerful perspective of what it is like to live with the disease. In 15 minutes, she challenged us all in how it feels to:

– have a missed diagnosis
– live with metastatic disease
– journey the inevitable phases after diagnosis”

However, she is and has been quite self-deprecating about the huge influence and role she has played in advocating for her fellow patients.

When I first met Sally in 2015, there was no ENETs Centre of Excellence in Wales. Indeed, at the time of her diagnosis, in 2009, only very limited access to expertise existed:

“People were literally dying for accurate diagnosis and care … referrals came late, if at all . . . and access was often only available to those well enough to travel to centres in England”.

Together, with a number of fellow patients, Sally campaigned for this to be addressed and remedied – lobbying AMs in the Senedd and senior officials at WHSSC (The Welsh Health Specialised Services Committee), as well as local Health Service Leads. NET Patient Foundation, as we were known at the time, offered our support. Things started to change, even more so following the appointment of a Gastroenterologist with Neuroendocrine Cancer experience and expertise.

Through collaborative work, led by consultant and patient partnership, supported by investment through WHSSC, NHS leads and staff, there is now a South Wales ENETs accredited Centre of Excellence – an award-winning centre.
As Margaret Mead commented:

Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.

As Sally steps down from her Ambassador role, I am sure that I am not alone in wanting to say Thank You Sal – for your kindness, generosity, courage & softly spoken determination – our cuppas and cwtches, and please
never underestimate the difference you made and the lives you touched
including mine, Nikie xx