Congratulations to Dr Mohid Khan, Wales Neuroendocrine Cancer Service; Cardiff & Vale University Health Board; University Hospital of Wales, for being awarded the CSSC Service Development Prize 2021.

Read his full submission and watch his presentation recording below.

Neuroendocrine Tumours (NETs) are uncommon cancers of increasing incidence, mainly affecting the gastrointestinal system. Requiring the input of numerous specialities, they are complex with aspects of both a cancer and a chronic disease, often with delayed diagnosis. With increasing survival, prevalence is approximately 50 per 100,000 making it the second most prevalent gastrointestinal cancer. An historic, fragmented service existed with widespread inequalities across health care organisation boundaries in South Wales, resulting in many patient complaints and concerns. A quantitative and qualitative patient survey was commissioned suggesting: little nurse specialist input (7%); lack of confidence in specialist expertise; poor communication and coordination from multidisciplinary team meetings (MDM); poor access to specialist investigations and treatments (40%), lack of attention to symptoms and quality of life; and sparse patient information. Overall satisfaction score was 19% and needs were prioritised. Using PROMS, a high burden of gastrointestinal symptoms were unaddressed e.g. urgency, stool consistency, frequency, incontinence, and overall gastrointestinal impact score 7 out of 10 (where 10 is worst).  

Additionally, analysing clinical data, gastroenterologists and surgeons make the diagnosis in 90% of cases. Engaging gastroenterologists and surgeons from all hospitals (across 6 Health Boards/Trusts) in South Wales, patients often had delayed diagnoses due to lack of awareness or vague symptoms, commonly presenting late with metastases, similar to other parts of the UK and Europe. Clinical data demonstrated a diagnosis time of 382 days, initial misdiagnosis in 44%, and 80% presenting with metastases. 

With a team led by a clinical expert, a gastroenterology-led, multidisciplinary service was commissioned across 7 NHS boards/trusts (incorporating 16 hospitals), hosted centrally from Cardiff, utilising aspects of care locally where appropriate. This was the result of a ‘Task and Finish Group’ exploring the data with NET patient groups, UK NET patient charity, cancer network and clinicians from various specialities, chaired by the Wales Health Specialist Services Committee (WHSSC). Options for service models were designed and appraised by groups of patients and carers in Wales, alongside commissioners and experts.  

The core components of implementation from 2018 were:  

• improved coordination, processes and communication from the MDM 
• recruitment and training of 2 NET cancer nurse specialists in gastroenterology 
• a specialist central NET clinic, embedding PROMs, focusing on GI symptoms and quality of life alongside clear gastroenterology-led advanced cancer management 
• improved patient information, engagement and communication 
• coordination of complex pathways across different healthcare organisations (NHS health boards/trusts) for specialist cancer diagnostics/treatment and symptom management 
• in-person and online education and communication with referring gastroenterologists and surgeons in Wales  

Median diagnosis time (from symptom onset to diagnosis) halved from 12.7 to 6.4 months. The proportion of patients presenting with metastases reduced from 80% to 61%. Due to the complexity of this GI cancer, this has not been demonstrated in any part of the world previously. There have over 200 patients referred each year since 2018 in addition to 500 existing follow up patients. 

Overall patient satisfaction rate improved:19% to 94% (sustained) with positive patient stories. The NET MDM is transformed, with accurate real-time digital records, timely communication with all parties, receiving excellent feedback from health professionals in all organisations. Two specialist nurses have been trained and are accessible to all patients regardless of geography, providing important patient information and support. Patients have access to a specialist expertise in Cardiff with a smaller hub in Swansea. 

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 17%. The proportion of patients reporting difficulty in accessing treatments reduced from 40% to 12%. With the focus on symptoms and quality of life, 94% of patients felt their symptoms were being addressed. Using PROMS, there was a reduction in all symptom categories reported with GI-NET21 and GI symptom scores significantly lower in the new service (p=0.006 and p=0.004) and impact of GI symptom score reducing from 7/10 to 5/10. 

Although PROMs have been used in other conditions, these were uniquely utilised to design the service and measure changes. Work is underway with the Wales Value Based Healthcare team investigating the value offered to society, based on the improvement of patient reported outcome measures (PROMs) and survival. The initiatives have reduced burden of gastrointestinal symptoms, thus reducing need for costly admissions or surgery. Improvement in symptoms and quality of life have enabled patients to maintain working roles and as carers for as long as possible. Utilising diagnostic tests close to the patient’s home has saved travel and time off work for patients. Earlier diagnosis is likely to have reduced long term disease burden, lifelong medical costs, and medical litigation which are common in NETs. 

This is the first time that specialist care for people with Neuroendocrine Tumours has been commissioned on a national level in the United Kingdom or Europe, which has been noted by the international community (including ‘Cancerworld’ magazine), and has been awarded a UK Patient Experience Network award. The European NET Society has provisionally accredited the service as a centre of excellence and work is underway to map pathways for North Wales. 

Through a centralised service, simple diagnostic and therapies are offered locally where possible, but with coordination centrally. This was routine practice pre-COVID. Implementation of video consultation (which had been planned prior to the pandemic) was accelerated and enabled patients (and clinicians) to access expertise without travelling long distances.  Enhanced communication with referring teams, genuine patient advocacy, PROMs, and the balance between central expertise and local care over a wide geographic area are generalisable to other services. 

A successful service has been achieved, highly valued by patients which is a transformation from an extremely negative situation in a relatively short space of time. From the outset, co-production has been the approach, with patients as stakeholders throughout the data analysis, service re-design and implementation phases, a patient group with little engagement throughout Europe.