In 2014, Novartis UK* and the Scottish Neuroendocrine Tumour Group (SCONet) came together to establish a collaborative project entitled ‘Scottish NET Guidelines Development and Implementation’. The aim of the collaboration was to address one aspect of ensuring equity of care, by developing and implementing NET clinical management guidelines across NHS Scotland. This would provide much-needed, dedicated services to people with this incurable and rare cancer, who may have previously ‘fallen through the net’ of care.
“The SCONet guidelines have led to some very positive outcomes for NETs patients in Scotland. This project has achieved much more specialised care while helping services strive towards consistent provision of NETs care across the country. The guidelines have provided reassurance to patients that they are receiving the most specialist care via a multidisciplinary team. I am proud to have been involved in helping to set a high standard of care in Scotland.
It has been two years since the implementation of the guidelines which have served as a significant step towards achievement of consistent and effective NET patient pathway across NHS Scotland.
SCONet is made up of 50 NHS stakeholders across five major cancer centres in Scotland and is Scotland’s first and largest national multi-disciplinary group for the treatment of NETs. Novartis UK is proud to have been involved in the development of the SCONet guidelines which:
Provide a useful source of guidance to clinicians
Help NETs patients receive specialised care through via a dedicated, multi-disciplinary team
Support people with a rare type of cancer and empower patients to seek the most specialised care
Improve patient experience for people in Scotland living with NETs
Identify requirements for an equitable service for NET patients across Scotland.
"People with rare cancers can frequently feel forgotten, as their disease is not widely recognised. This has been the case with NETs patients. NETs is the umbrella term for a group of rare and often slow growing tumours; 60 to 80% of patients are diagnosed at an advanced stage often because symptoms can be similar to those associated with other conditions. It is important that patients are treated by doctors with experience of the disease as part of a multi- disciplinary team.
“The SCONet project has given vital focus to this rare cancer. We have seen greater collaboration between healthcare professionals involved in the treatment of people with NETs across Scotland since the project’s completion. This will hopefully lead to more efficient management of the disease and improved diagnosis of NETs in Scotland as a result of enhanced awareness of the condition. Improved, consistent education across the board for healthcare professionals will ensure that the benefits of the project remain in many years to come.
What are NETs? NETs are tumours that develop in the cells of the neuroendocrine system and can be found in different organs, such as bowel, stomach and lungs.1 In Scotland, around 150 people are diagnosed with NETs annually; however, prevalence is amongst the highest of all cancer types, due to the extended length of survival.2 NETs are unpredictable and complex to treat, with multiple specialities involved in the management of this disease.3 Prior to the SCONet guidelines, it was difficult for the different specialities (i.e. surgical disciplines, oncology, endocrinology, gastroenterology, clinical nurse specialists etc.) to collaborate, meaning patients were often treated within wrong, more generalised faculties.
Novartis UK is proud of its collaboration with West of Scotland Cancer Network (WoSCAN) and NHS Glasgow & Clyde, working together to achieve the common goal of improving patient experience. For more information about Novartis UK’s joint working partnerships with the NHS and other institutions, please visit our Joint Working webpage here.