- Influencing website content including hints and tips for hospital visits and providing personal video stories.
- Raising awareness of their experience of living with Neuroendocrine Cancer.
- Sharing their experiences at medical conferences to ensure the patient voice is heard loudly within the medical community.
- Raising awareness of the impact of Neuroendocrine Cancer amongst non-healthcare professionals, for example; the pharmaceutical industry.
- Taking part in advisory boards when requested.
- Having a presence at NCUK’s annual AGM and staff meeting.
- Attending and manning stands at revenant conferences within the UK and Europe.
- Taking part in NCUK events.
- Producing valuable awareness tools
- Preparing the Excellence in Care Charter for Neuroendocrine Cancer.
If you would like to express your interest in becoming an NCUK Ambassador, then please complete the application form below.
Meet the NCUK Ambassador Team
I am Bethann Siviter, a nurse and nurse author who has been disabled due to spinal injury since 2006.I was previously a nurse consultant and lead nurse for a community trust, and am a qualified district nurse. I completed my nursing diploma at Birmingham City University, where I built up my campaigning expertise in various roles at the Royal College of Nursing (RCN), Association of Nursing Students (ANS), National Executive, and the RCN Council.
I was also on the Nursing an Midwifery Council’s Professional Practice Committee, the Department of Health’s Essence of Care working party, and the Older People’s Expert Nursing group.
I originally trained as a nurse in the United States, then moved to the UK 20 years ago.
I’m married and live just outside Birmingham. I am always accompanied by my Canine Partner Assistance Dog, Taska.
I write about the impact of developing a disability and returning to work after long illness, as well as the importance of healthcare assistants, and I contribute to the RCN’s ‘Statement of Principles on Nurse Education’.
For me, what’s important and what I can speak about, that others might not be as able to, is the value of helping people accept their changed health status, about how the medical model isolated me and others, and how a small slow cancer might not mean much to them but to me -after three years of increasingly difficult symptoms no one cared about – it’s a very big deal indeed.
Seeing me as a person means being expert enough to be adaptable and responsive, and to involve me in my care, its treatment, and diagnosis.
We need practitioners who not only hold excellent clinical skills, but human skills as well.
Over the last 6 years, I have gone through many treatment options in an attempt to control my cancer with mixed results. I started with Lanreotide injections, 4 Hepatic artery embolizations (waiting on 5th), part of the TALENT study which used the drug Lenvatanib and 4 rounds of PRRT. I recently had open-heart surgery to replace my Tricuspid and Pulmonary valves and I’m waiting on surgery to replace these after only 11 months.
My previous career I served in the Royal Engineer in the Army and most recently I was an Area Manager for a Security company. Unfortunately at this time, I’m not able to work so spend my time as a stay at home daddy and enjoying watching my 2 children grow. I decided to become an Ambassador for Neuroendocrine Cancer UK as I believe that we all have an important part to play in raising awareness and the patient voice is a powerful tool.
John runs his own business as an independent Chartered Financial Planner and now offers free financial guidance to families affected by neuroendocrine cancer. He, and his wife Lee, have been running the South East Natter Group since 2012. Out of work and charity activities, John loves reading, fly-fishing, his family including two Jack-a-poos and his beloved Leeds United (well he can’t be completely happy then)!
I am classed as a watch and wait due to the siting of my primary, and my previous medical history indicates that I may have been living with this for 7-10 years prior to diagnosis. Due to progression in late 2017, which was having a big impact on my quality of life I underwent PRRT treatment between July 2018 and January 2019. I also write a blog, charting my journey.
Kate was diagnosed in 2003, with what was previously known as a Typical Carcinoid tumour of the lung… and Kate has never smoked! She underwent a lower left lobectomy, and was followed up for 5 years and then discharged as NED (no evidence of disease). In 2015, a routine mammogram picked up what was thought to be a breast cancer but was, in fact, a breast neuroendocrine cancer metastases. A change of hospital and several scans later, Kate was diagnosed with Lung Neuroendocrine Cancer and is now under the marvellous care of The Christie Manchester, where she is also a Patient Rep for the PET-CT Academy. Kate is currently completing 4 cycles of PRRT (Peptide Receptor Radionuclide Therapy) at Guy’s & St Thomas’ Hospital, London.She was also one of the patient contributors in the production of our New NCUK Lung Handbook. She represents NCUK on the International Neuroendocrine Cancer Alliance (INCA) Boot Camp and is a firm believer that patients should have a seat at the table to be a true partner with healthcare professionals and share decisions about their care. Kate’s specialist area of interest is clinical research and development for all things Lung Neuroendocrine-related, including the mechanisms of accessing diagnostics and new drugs.
In 2011 my health declined. I have a typical history of endless appointments and misdiagnosis. After three years I finally progressed to a confirmation that I had Neuroendocrine cancer and required major surgical intervention in 2014. Further discoveries and secondary disease were located just one year later. It was then I set to work to discover the realness of this disease and its impact. This rollercoaster led me to the Neuroendocrine Patient Foundation, now the NCUK. The desperation and isolation I felt as a result of the differing responses by medical professionals to this sneaky disease led me to investigate the options of Peer Support as a survival mechanism.
Roll on 8 years I coordinate a NET Natter Group in Plymouth, serving the Plymouth City and surrounding areas into Cornwall. I am passionate about ensuring others be it patients, carers or supporters of this disease to have access to whatever level of support service that fits their purpose. I am very much an advocate for patient voice and enjoy the benefits of my peer’s support as much as I choose to offer time to others. One of my very favourite quotes that I live by is ‘Maybe I can’t stop the downpour, but I can join you for a walk in the rain’.
Hi I’m Martin, 57 years old, long-term Pancreatic Neuroendocrine patient.
Joining the Neuroendocrine Patient Ambassador Team means that I will have a more concrete platform to share my historic and future experiences (watch out for future Blogs / Vlogs) whilst utilising the consultancy skills built up over 30 years, to assist with the various reviews and projects planned for the team.
Personally, as I am no longer working, I’ve been missing a sense of purpose and becoming a Patient Ambassador brings with it an opportunity to make a difference and to add some value.
My name is Sally Jenkins and I am a retired computer systems analyst and lecturer living in South Wales.
I was diagnosed with metastatic small bowel NETS in 2009 after life-saving emergency surgery for mesenteric ischaemia caused by the NETS.
Before diagnosis I had two gruelling years of ‘revolving doors ’ visits to different medics, without result.
After diagnosis it still took several years of struggle with badly managed symptoms before a NET specialist took over my management and transformed my Quality of Life.
Now, eleven years on from diagnosis and receiving superb care from a NET Centre of Excellence I am still battling to adjust to the ever-changing physical and mental challenges of living with Neuroendocrine Cancer.
I seize any opportunity to raise awareness of this Cinderella cancer and am delighted to be a patient ambassador for Neuroendocrine Cancer UK. My specialist interest is the MIND the Gap programme. I am a critical friend to NHS Wales and I value fair play. I enjoy yoga and spending time with friends and family, including dogs and cats!
I was diagnosed in October 2018 (aged 35) with two Pancreatic Neuroendocrine tumours (one in head and one in tail, both less than 1cm) Stage 1, Grade 1 and Ki67 <2%. This, however, is not the start of my journey.
In July 2012 I was diagnosed with Multiple Endocrine Neoplasia Type 1 (MEN Type 1) through a genetic test at The Queen Elizabeth Hospital, Birmingham. This is a hereditary condition associated with tumours of the endocrine (hormone producing) glands. The most common tumours seen in MEN Type 1 involve the parathyroid gland, the pancreas, and pituitary gland, commonly referred to as the 3P’s.
I was now under an Endocrinologist at the QE Birmingham and would be for the rest of my life, with annual blood tests, CT’s and MRI’s. For the first few years my health was fine. Then in 2016, I started to suffer from extreme acid reflux, so I moved on to a PPI.
The first PPI did not agree with me, so I moved onto a second. At first this worked, however the acid reflux and serve heart burn and vomiting returned. This was so severe that I underwent an endoscopy and was diagnosed as having a severe oesophageal ulceration. My PPI was then increased from one a day to two a day.
At the same time my annual blood tests had shown that my calcium levels had been increasing. Therefore, I was off to see another medical team. This resulted in nuclear medicine scans on my parathyroids. Two of which were glowing so in November 2017 these were removed, and I spent three days in the QE Birmingham.
During 2018 I suffered from extreme sickness and diarrhoea. This resulted in extreme dehydration. I was taken to hospital five times in seven months by ambulance, where I was rehydrated and sent on my way. As you know, this is not normal and the story moves towards NETs. So, it just so happened that as a spin off, of MEN Type 1 you are at higher risk of developing NETs (which I didn’t know).
I was in regular communication with my endo at the QE, at this time, saying “this can’t be normal”, which he agreed it wasn’t. He sent me for MR’s / CT’s and something was seen on my pancreas.
So, another EUS with ultrasound was ordered (by this point I was pretty anxious and had to be sedated). Then in October 2018, I received a letter informing me I have two pNET’s at either end of my pancreas.
In December 2018, I returned to the QE Birmingham to see the NET team for the first time (of which my endo is part of) after the MDT meeting. I started on 60mg Lanreotide every 28 days supported by Creon with every meal (don’t forget still on the PPI). I did the second injection at the QE under the supervision of the NET nurses. I did the third one at home in February 2019 and have been doing them at home ever since.
Since December 2018 I am a ‘watch and wait’ or as I like to describe it a ‘ticking time bomb’. I’m fully expecting a total pancreatectomy when either one or both of the tumours reaches 2cm.
I feel lucky, that up until this moment in time I haven’t had too many procedures.
I’m 38, husband to Amy, father to three girls Lily (10), Penny (7) and Evie (4). I was a Senior Vice Principal in secondary education but retired on medical grounds and deemed to ill to be able to gain meaningful employment again, in other words, I’m retired. I’m a stay-at-home dad.
Look closely, look closely, . . . what do you see? Blood values and scans? Or do you see ME? I’m more than my cancer, more than my cells. There is more to my life than my DOTA scan tells… Help me to live, help me to heal. See not only my body…. Learn – see – how I feel.
by Bethann Siviter
Neuroendocrine Cancer UK is a UK wide charity solely dedicated to providing support and information to those affected by Neuroendocrine Cancer.
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