A 'hub and spoke' approach to providing mesothelioma clinical nurse specialists across the UK
Category: Diagnosis and Initial Needs
Over 2,500 people across the UK are diagnosed with mesothelioma each year with the UK having the highest incidence in the world. Access to a mesothelioma clinical nurse specialist is patchy and yet essential in supporting the NHS to drive up standards and ensure equitable access to world class treatment, trials and care.
During 2015/2016 the number of mesothelioma UK specialist nurses increased to 12 with the formation of two team leader posts. Currently, there are 13 mesothelioma UK clinical nurse specialist with the aim to increase to 18 as we progress through 2017. Current posts are in Leicester (2), Portsmouth, Manchester (2), Sheffield, North East, Oxford, Glasgow, Yorkshire, Wales, Plymouth and Cambridge. However, there are still large areas without access.
Establishing the 'hub and spoke' has enabled specialist mesothelioma nursing to be integrated into front line services within the NHS to ensure it is available at the point of need. Clear leadership has developed from the director of services/nurse consultant and the 2 team leaders, one covering the south and the other covering the north of England, Wales and Scotland.
Each nurse has a clear service level agreement with the host trust outlining the requirement for the role to have a local, regional and national remit. The nurses have become integral to the multidisciplinary teams and team meetings and in co coordinating care, brokering and being the expert practitioner. They play a part in developing information, assessment, referral, symptom management, research, optimising function and life style advice. The nurses are able to be alongside the patient throughout their pathway.
They have been able to develop and help in sustaining support groups with 75 meetings being attended in 2016/17.
The nurses can be accessed via the Freephone helpline and dealt with 609 of the 2319 calls in 2016/17. Many of these calls were regarding access to care, support, information and clinical trials.
Practice has been changed by having the nurses in place to address the unacceptable variation in access to specialist treatment, care and clinical trials.
Each of the mesothelioma clinical nurse specialist posts are funded by Mesothelioma UK for 0.4% WTE and all of this is derived from charitable donations.
National Lung Cancer Audit. Pleural Mesothelioma Report 2016.( Royal College of Physicians). The Next 5Years Mesothelioma UK 2016-2021 Strategy. (Mesothelioma UK)