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NET nurses: supporting patients confused by their rare cancer diagnosis

‘Even healthcare professionals don’t know enough about neuroendocrine cancers’

‘Even healthcare professionals don’t know enough about neuroendocrine cancers,’ says NET Patient Foundation support nurse specialist Nikie Jervis

The Net Patient Foundation offers support, advice and information for patients and their families
The Net Patient Foundation offers support, advice and information for patients and their families

For patients with very rare neuroendocrine tumours (NET), finally talking to someone who has expert knowledge of their condition can be an enormous relief.

‘I’ve had people burst into tears,’ says Nikie Jervis, a patient information and support nurse specialist with the NET Patient Foundation, a charity set up by nurses and patients. 

‘Some say “you don’t know what a difference you’ve made to me because you understand this”. The relief in finding someone who knows is huge. One patient said that without the support, advice and information we’d given her, she wouldn’t be alive.’

‘There is a lot of misunderstanding about NET... it doesn’t follow the typical treatment trajectory, with chemotherapy and radiotherapy’

Nikie Jervis

Ms Jervis joined the foundation in 2015 after working in the specialty for more than 20 years. She developed an interest in NET while caring for patients with liver disease, including cancers.

‘Professionally speaking, NETs are an incredibly interesting group of cancers to learn about,’ she says. ‘But I also found the dynamic between patient and nurse fascinating. You get to know people very well, alongside finding out more about the disease itself.’

Nikie Jervis, patient information and support nurse specialist at NET Patient Foundation
Nikie Jervis: ‘In this role, I’m a professional friend. I have knowledge of all the terminology
but also the healthcare processes too.’

Limited public awareness about NET

NET is an umbrella term to describe cancer of the neuroendocrine system. It has slow to moderate growth, while neuroendocrine carcinoma (NEC) grows more rapidly. NET produces a variety of symptoms – or even none at all – depending on which neuroendocrine cells are affected. Currently, it has no clearly identifiable cause. 

‘There is limited public awareness and a lot of misunderstanding about NET, including from healthcare professionals who don’t know enough about it either,’ says Ms Jervis, who qualified as a nurse in 1990.

‘There is the idea that it’s not really a cancer because it doesn’t follow the typical treatment trajectory, with chemotherapy and radiotherapy. Patients often look well. There are also the psychological effects of living with a life-limiting condition,’ she says.

Reliable information for patients and their families

Providing authoritative information for patients and their families is among the key aspects of her role. ‘We make sure it’s reliable,’ says Ms Jervis, who writes a lot of the resources herself.

‘Even between hospitals there can be inconsistencies in what they’re saying. We have built up a really good reputation for the quality of what we do, and everything we produce is reviewed by experts and patients. There is no point in us writing what we think is a lovely bit of script if it makes no sense to a patient. Ensuring they understand is vital.’

The charity offers a handbook for those living with neuroendocrine cancer, alongside a pack of information for those who are newly diagnosed. There are also individual fact sheets for each cancer type and three kinds of wallet cards in case of an emergency.

NET, the umbrella term for cancer of the neuroendocrine system, has slow to moderate growth and a variety of different symptoms – or none at all
NET has slow to moderate growth and a variety of different symptoms – or none at all
Picture: iStock

Unpicking common misinformation is crucial. ‘Around 20% of people are told at diagnosis that it’s not cancer, while others are told it’s a “good cancer”,’ says Ms Jervis.

Sometimes patients don’t understand the information they’ve been given. ‘For some, the first time they realise it’s cancer is when they receive a letter from the oncology department,’ she says.

Coping with uncertainty and financial difficulties

The charity provides a helpline open to anyone affected, including loved ones, offering support with everything from what their diagnosis means to signposting to services that can help with financial difficulties.

They also run 30 NET Natters peer support groups around the UK. Open to patients, their families and friends, the groups range in size from three or four people to a maximum of 20. Online groups cater for those who cannot get to a meeting.

There is also a dedicated counselling service, open to patients and their families. ‘It makes such a difference to talk to someone who understands their condition and the problems that can occur, which may also have their own effects,’ says Ms Jervis.

‘For those who have a lower grade NET, which may take years to progress or change, there are significant issues around not knowing. I’ve heard it described as living under the sword of Damocles. The uncertainty can be a major difficulty.’

‘I help people with NET get the best from their care’

Advocating on behalf of patients’ interests is another important area of the charity’s work. It provides expert input to technology appraisals carried out by organisations such as the National Institute for Health and Care Excellence (NICE) and the Scottish Medicines Consortium.

‘Achieving small changes can lead to such improvements in overall patient care and is a major tick for job satisfaction here,’ says Ms Jervis.

She believes being a nurse is crucial to the success of her post. ‘In this role, I’m a professional friend,’ says Ms Jervis. ‘I have knowledge of all the terminology but also the healthcare processes too.

‘I can help people get the best from their care, encouraging them to question and ask for that expert review if they need it, becoming partners in their own care. We’ve giving patients the support to find their feet. It’s a fabulous job.’

Lynne Pearce is a health journalist

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