Case Study

Care for patients with Neuroendocrine Cancer across South Wales has been transformed since September 2017 by developing a nationally commissioned patient-centred service across Welsh NHS organisations. Historically, a fragmented service received significant negative feedback. Led by a Gastroenterology NET expert, working with commissioners and patient groups through co-production, options of the model of care were appraised and implemented at a central and local level. Two cancer nurse specialists have been trained and provide support and education regardless of geography. There is more effective communication from the NET multidisciplinary meeting with equality of access to specialist expertise, diagnostics and treatments. The new service has gained the confidence of patient groups with overall satisfaction rate increasing from 19% to 99%. Using patient reported outcome
measures (PROMS), there is a statistically significant reduced burden of gastrointestinal symptoms with 93% of patients feeling their symptoms are being addressed. To achieve sustainability, activity is recorded to guide devolvement of resource. Working with local clinicians has provided education to provide some local follow up for simple cases, guided centrally, which encourages sustainability. The
success has been shared with national Wales commissioners, other NET centres in the UK and Europe through conference presentations and social media.

Neuroendocrine Tumours (NETs) are uncommon cancers of increasing incidence, mainly affecting the gastrointestinal tract. Requiring the input of numerous specialities, they can be complex with aspects of both a cancer and a chronic disease. An historic, fragmented service existed with inequalities across health care organisation boundaries in South Wales. A patient survey suggested little nurse specialist input, lack of confidence in specialist expertise, poor communication and coordination from the multidisciplinary team meeting (MDM), poor access to specialist investigations and treatments, lack of attention to symptoms and quality of life, and sparse patient information. This resulted in an overall satisfaction score was 19% and a high burden of gastrointestinal symptoms which were unaddressed.

Led by an expert from an international centre of excellence, a gastroenterology-led service was nationally commissioned across 7 NHS boards or trusts (incorporating 16 hospitals) in Wales centrally from Cardiff. This was the result of a ‘Task and Finish Group’, exploring the patient survey and opinions with representatives from South East Wales and South West Wales NET patient groups, the wider UK NET patient foundation charity representative and clinicians from various specialities across Wales. Options for a service model were appraised by the wider group of patients and their carers in Wales, in addition to commissioners and experts from international (European NET Society) centres of excellence. As the service was implemented, regular stakeholder partnership meetings were held informing patient groups of updates, and asking for ongoing feedback into the service on an iterative basis. The core parts of the service implemented were improvement of the processes of the MDM, recruitment and training of 2 NET cancer nurse specialists for patients, administration support, a specialist central NET clinic, improved patient information with specifically designed literature and website, and coordination of the complex pathway across a number of different healthcare organisations (NHS health boards/trusts) for specialist, and local investigations and management.

In a short space of time (one year), the NET MDM has been transformed, with accurate real-time digital records and timely communication to clinicians and patients with emphasis on accurate coding and database input. Excellent feedback has been obtained from health professionals in all organisations. Two specialist nurses have been appointed, trained through a bespoke training programme and are accessible to all patients regardless of geography and organisational boundaries, providing important patient information and support. Patients have access to a specialist NET
expertise in a clinic based in Cardiff with a smaller hub in Swansea. On a repeat patient survey, overall patient satisfaction rate has improved from 19% to 99% with free text answers demonstrating positive patient stories. 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%. The proportion of patients reporting difficulty in access treatments reduced from 40% to
12%.Patient reported outcome measure (PROMS) were used to evaluate symptoms and quality of life (GI-NET21 and GI symptom rating scales) in addition to a repeat patient experience survey. Regular engagement with the two patient group meetings in Cardiff and Swansea was established for patient education, talks, Q&A and drop-in sessions. 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
reported with impact of GI symptom score reducing from 7/10 to 5/10. GI-NET21 and GI symptom scores were lower in the new service (p=0.006 and p=0.004).

A detailed report with a summary infographic have been presented at various meetings within the organisation including the medical director and chairman. This has been publicised with the partner organisations and the national commissioners (WHSSC) and lessons are being learnt for other specialist commissioned services. Social media has bene used to make others aware through the Twitter account and the organisation communications department. The success has been shared at national and international conference presentations.

The is relevant to other specialist disease areas where care requires the coordination across NHS healthcare boundaries. Despite an extremely negative public image with resulting poor service, it is still possible to ‘turn around’ the situation with genuine, honest and transparent engagement with the patient groups. Through co-production and an iterative method of developing a service with repeated feedback from the patient voice, a successful service which is valued by patients is achievable.

This is the first time that specialist care for people with Neuroendocrine Tumours has been commissioned on a national level in the United Kingdom which has been noticed by international patient groups. A very successful service has been achieved, highly valued by patients which is a transformation from an extremely negative situation. In addition to the complexity of the disease (which is heterogeneous), this initiative has involved complex pathways across financially independent organisations and cancer networks. From the outset, co-production has been the approach in this service facilitated by Welsh Health Specialised Services Committee, with patients centrally involved throughout the process.

Despite an extremely negative public image with a resulting poor service historically, it is still possible to ‘turn around’ the situation with genuine, honest and transparent engagement with the patient groups over a wide geographic area. Through co-production and an iterative method of developing a service with repeated feedback from the patient voice, a successful service which is valued by patients is achievable.

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