UKIOG: UK and Ireland Oesophago-Gastric Group

Executive Summary

There is a clear need to establish a multi-professional OG cancer group from the devolved countries of the UK and Ireland. Cancer outcomes are poor relative to similarly developed countries (ICBP, Eurocare, Concorde) and in addition there is unacceptable variation in both outcomes and practice across the UK (cancer registries and NOGCA). Whilst there are a number of speciality focused professional organisations (eg AUGIS, BSG, NCRI CSG), and third sector organisations, there is not a common National space for increasingly multi-disciplinary professionals and stakeholders to meet. Other groups in different cancers, such as BTOG, BUG and UKNETs, have systems and events that support education, promotion of best practice, patient advocacy, research and closer collaboration with industry partners. We have established a UK and Ireland multi-professional oesophago-gastric charity- starting with regular monthly case based discussions and education talks and planning a first annual event for Autumn 2022 (registered charity number 1198358).

Why?

Oesophago-gastric cancer has been designated as a cancer of unmet need. Outcomes are poor relative to other cancer sites and have not improved as much as these in recent decades. Outcomes in the UK are also poor compared with other similarly developed countries based on IInternational Cancer Benchmarking Partnership (ICBP), Eurocare and CONCORD data. There are also significant differences in outcomes within our own National Health Systems (registries). Whilst this may reflect a relatively poor general health and health seeking behaviours of our population in the United Kingdom we have poor access to diagnostic tests (numbers endoscopies, ICBP module on willingness to refer), long diagnostic and treatment pathways (ICBP module, National Oesophago-Gastric Cancer Audit (NOGCA)) and significant variation in practice (NOGCA).

Diagnostic and treatment services have been particularly badly affected by the COVID pandemic, but this has only exposed the previous fragility of our workforce, facilities, and infrastructure. Endoscopy was discontinued in the first wave and the capacity and throughput has been severely affected by necessary infection control measures. Some surgical services, especially where co-located with frontline COVID intensive care units have been suspended. It would appear as a result we are seeing presenting with more advanced disease, taking longer to get through the diagnostic pathway, patients becoming deconditioned and treatment therefore being less effective.

Responding to medical workforce challenges and following best practice guidelines (NICE and international guidelines), care across the diagnosis and treatment pathway is increasingly being delivered by a wide range of professionals (eg non-medical endoscopy, gastro-enterologist treated early disease, access to expert dietetic advice and support by specialist nurses).

Participation in high quality research (also badly affected during COVID), is a surrogate for service quality, demonstrating enthusiasm for local teams to improve patient outcomes, to collaborate with National colleagues, to deliver standard of care protocols including additional support for patients. Recruitment to high quality clinical trials has fallen in recent years, but is also highly variable across the UK.

The development of multi-professional staff, promoting best practice, coordinating high quality clinical research and accelerating implementation of such research and innovations (eg systemic immunotherapies, Cytosponge, new endoscopic technologies, blood based diagnostics) demands that we bring people together to agree best practice, to reduce variation, to ensure everyone has access to the best knowledge and research; and ultimately improve patient outcomes.

What?

We have developed a multi-professional oesphago-gastric charity in the UK and Ireland. With the aim of:

• Promoting and delivering best practice more consistently

• measuring this through National audit and datasets

• High quality education and training

• Of both professionals, patients and the public

• Patient advocacy and support

• Promoting access to high quality research

• including supporting centres of translational research excellence

Timeline

2021

• We initially developed a small operational leadership group and a Network of regional leads throughout the UK and Ireland.

• We used a small amount of funding, hosted by one of our NHS centres, to appoint project and adminstrative support

• We developed a Network of multi-disciplinary professionals from centres and units throughout the UK

• We established a list of third sector and industry partners willing to support this venture

• We delivered a monthly virtual cased based discussions and educational talks

• We will took advice for what would the most appropriate legal entity to support our work

2022

• We established the legal entity and became a registered charity (registered charity number 1198358)

• We established a board of trustees, a steering group and a clinical reference group and non clinical partnerships (national PPI and charities, pharma, technology companies etc)

• The aim will be for membership to be free for patients, public and non medical professionals, possibly a nominal charge for medical professionals and annual subscriptions from industry partners

• We will hold out 1st annual event in Autumn 2022, residential with 300 participants