Read the Highly Commended development prize submission from BSG 2019 by Dr Mohid S Khan, Clinical Lead and Consultant in Gastroenterology & Neuroendocrine Tumours at Cardiff & Vale University Health Board
A gastroenterology-led service was commissioned across 7 NHS boards/trusts (incorporating 16 hospitals). The core parts of the service implemented were improvement of the MDM, recruitment and training of 2 NET CNSs, administration, specialist central NET clinic, improved patient information with specifically designed literature and website, and coordination of complex pathways across different healthcare organisations for specialist and local investigations and management.
Neuroendocrine Tumours (NETs) – Improvements in Service Provision for Wales
Dr Mohid S Khan, Cardiff & Vale University Health Board
Authors and Institution (listed with their role)
- Dr Mohid S Khan, Clinical Lead and Consultant in Gastroenterology & Neuroendocrine Tumours
- Dr Carys Morgan, Consultant Oncologist; Dr Sarah Gwynne, Consultant Oncologist
- Dr Adam Christian, Consultant GI Pathologist
- Dr Aled Rees, Consultant Endocrinologist
- Cath Powell, NET CNS; Rebecca Taylor, NET CNS
- Dr Patrick Fielding, Dr John Rees, Dr Rwth Ellis-Owen, Consultant Radiologists
- Mr Naga Kumar, Consultant Hepatobiliary Surgeon; Prof Bilal Al-Sarireh, Consultant Pancreaticobiliary Surgeon
- Mr Kyle Morgan, NET MDT Co-ordinator
Challenges and the need for change
- Neuroendocrine Tumours (NETs) are uncommon cancers of increasing incidence, mainly affecting the gastrointestinal tract; they can be complex with aspects of both a cancer and chronic disease. With increasing survival, prevalence is approximately 50 per 100,000 making it the second most prevalent gastrointestinal cancer.
- An historic, fragmented service without Gastroenterology input existed with inequalities across health care boundaries in South Wales with numerous patient complaints and concerns.
- A patient survey was conducted which suggested little cancer nurse specialist (CNS) input (7%), lack of confidence in specialist expertise, poor communication and coordination from the multidisciplinary team meeting (MDM), poor access to specialist investigations and treatments (40%), lack of addressing symptoms and quality of life, and sparse patient information. This resulted in an overall satisfaction score of 19% and a high burden of gastrointestinal symptoms which were unaddressed.
Overcoming the challenges
- A ‘Task and Finish Group’ explored the patient survey with patient representatives, UK NET Patient Foundation, Cancer Network and clinicians, chaired by the Wales Health Specialist Services Committee (WHSSC). Options for service models were appraised by the wider group of patients and carers in Wales, in addition to commissioners and experts from international centres of excellence. PROMS were utilized (GSRS and EORTC-GINET21 questionnaires).
- Existing patients in the fragmented service demonstrated poor quality of life and high gastrointestinal symptom burden with overall gastrointestinal impact score 7/10 (10 is worst).
- A gastroenterology-led service was commissioned across 7 NHS boards/trusts (incorporating 16 hospitals). The core parts of the service implemented were improvement of the MDM, recruitment and training of 2 NET CNSs, administration, specialist central NET clinic, improved patient information with specifically designed literature and website, and coordination of complex pathways across different healthcare organisations for specialist and local investigations and management.
Evaluation and Outcomes
- From September 2017 to January 2019, 310 new patients and over 400 follow up patients had care optimised.
- On repeat survey, overall patient satisfaction rate improved from 19% to 99% with positive patient stories. The NET MDM has been transformed, with accurate real-time digital records and timely communication, generating excellent feedback from health professionals in all organisations. Patients have access to specialist NET expertise in a Cardiff clinic with a smaller hub in Swansea. The proportion of patients reporting difficulty in accessing treatments reduced from 40% to 12%.
- With the focus on symptoms and quality of life, 93% of patients felt their symptoms were being addressed. There was a reduction in all symptom categories on GI-NET21 and GSRS questionnaires were significantly lower in the new service (p=0.006 and p=0.004), with impact of GI symptom score reducing from 7/10 to 5/10.
- Two CNSs have been trained and are accessible to all patients regardless of geography. Previously, 62% of patients reported that they would have preferred more information communicated to them on their disease. After implementation of the new service, this reduced to only 6%.
- Incorporating Gastroenterology into NET services improves patient outcomes. The is relevant to other disease areas where care requires coordination across NHS healthcare boundaries. Through a more centralised service, simple diagnostic and therapies are offered locally, where possible, but with coordination centrally and some tailoring to these regions. Additionally, education on simple NET cases provides a degree of local care which may help sustainability. These results could be generalised to other specialist services over a wide geography.
- Despite an extremely negative public image with a poor service, it is still possible to transform the situation with genuine, honest and transparent engagement with stakeholders. Through co-production and an iterative method, a successful service which is valued by patients is achievable. We focused on what mattered to patients and outcomes, measuring these through questionnaires and PROMS to evaluate the service.
- Infographic and WHSSC Joint Committee recommendation/business case
- Patient representative reference (Sally Jenkins)
- Patient and relative reference (Gaynor and David Miles)