The Wales Cancer Network response to the Health, Social Care and Sport Committee’s inquiry into endoscopy services in Wales.
Introduction
1. The Wales Cancer Network is a collaboration between health boards and trusts, health professionals, the third sector and other stakeholders to develop and improve cancer services with the aim of improving cancer survival, and quality of life and experience of those living with the impact of cancer; ensuring the safety and sustainability of cancer services; reducing inappropriate variation in services; and encouraging and supporting innovation in service delivery. It supports health boards and trusts to meet the requirements of the Welsh Government’s Cancer Delivery Plan, and other national strategic plans and frameworks for cancer, and provides advice and guidance to Welsh Government on policy relating to cancer care in Wales
2. A robust and well-functioning endoscopy service is an essential component of cancer services in Wales, and the Wales Cancer Network is therefore grateful for this opportunity to respond to the Health, Social Care and Sport Committee’s inquiry into endoscopy services in Wales.
3. Whilst we are aware that there have been some recent improvements in services across Wales, with the number of patients waiting greater than 8 weeks decreasing, it is essential for cancer services that waiting times for endoscopy are as short as possible to support earlier diagnosis and ensure that patients can start their treatment as quickly as possible. Any delays are likely to have a direct impact on outcomes for patients, including survival.
4. Recent international benchmarking studies such as the International Cancer Benchmarking Programme (ICBP) have shown that Wales has the worst survival for cancers of the gastro-intestinal tract when compared to other jurisdictions across three continents. Wales has worked with the ICBP to understand the causes of this poor survival, which include late stage at diagnosis; a reduced threshold to investigate symptoms; access to diagnostic tests; and excessively long times for Welsh patients in going through diagnostic pathways. For gastro-intestinal cancer, access to endoscopy, as well as radiological imaging, are the key components of the diagnostic pathway.
5. We will address each of the Committee’s key areas of interest in turn.
Earlier diagnosis, specifically the introduction of the Faecal Immunochemical Test (FIT) into the bowel screening programme and the recently announced change to age range
6. We welcome the introduction of the FIT test for screening, especially as it is proven to increase uptake in bowel screening. A pilot study in Scotland showed an increase in uptake of 4.8 percentage points. We also welcome the extension in the age range. It is, however, clear that these changes will lead to an increased demand for endoscopy and, as a result, the extension in the age range will not be fully implemented until 2023. We are aware that health boards are working with Bowel Screening Wales to review their capacity in the light of the anticipated increase in uptake of the test. It is essential that endoscopy capacity is increased to enable these changes to be introduced sooner and to meet the growing demands, otherwise waiting times are likely to increase.
Diagnostic service capacity and waiting times, including the extent to which capacity constraints are driving the recommendation to set the FIT threshold for its introduction to the bowel screening programme at a relatively insensitive level
7. From a survey conducted by the Wales Cancer Network, primary care access to endoscopy services is variable across Wales and is not timely. According to the survey, most units are unable to carry out investigations quickly enough to ensure that patients are treated within the existing Urgent Suspected Cancer waiting times target that requires patients to have started treatment within 62 days of referral.
8. Overall, the demand for cancer diagnostic services has risen by approximately 8-10% per year for the past few years. This is probably as a result of increased suspected cancer referrals as a result of NICE Guidance (NG12) for Suspected Cancer: recognition and referral, which provides guidance for primary care on recognising those patients who have symptoms that could be caused by cancer and on referring them for investigation. This was published in 2015. In addition, it is clear that demand for services will continue to increase each year because of the ageing population.
9. There are concerns that the lack of timely access to endoscopy from primary care can lead to ‘gate keeping’, with GPs either consciously or unconsciously changing the threshold at which they decide to refer patients for investigations for symptoms which may be caused by cancer. When they do refer, there is evidence that patients in Wales spend longer in the healthcare system, present with later stage disease and have poorer 1 and 5-year survival than similarly developed countries and jurisdictions.
10. The Faecal Immunochemical (FIT) Test in Wales is being introduced at a planned sensitivity threshold of 150µg/g (micrograms/gram of stool), whilst the level in England is planned to be 120µg/g and in Scotland it is 80µg/g. The lower the sensitivity threshold, the more cancers can be detected, but also the more patients are referred for colonoscopy. The higher level chosen in Wales is not in line with that recommended by evidence-based guidelines, but has been chosen because of the constraints in current endoscopy capacity. This will lead to a lower number of cancers being screen detected at an earlier stage with a detrimental effect on patient outcomes, including survival. It is also likely to inhibit more cost effective treatment. There is a commitment to lower this threshold to optimal levels and the Network will support NHS Wales in working to achieve this as soon as is practicably possible.
11. The clinical community in Wales welcomes the intent to reduce the age and sensitivity threshold. The Wales Cancer Network is leading the implementation of the single cancer pathway on behalf of the Cancer Implementation Group. This programme has recognised the need to improve information systems, develop capability to better model the required endoscopy capacity to meet demand and the development of optimal pathways and service models. These will be essential components of the solution to meet the demand created by the introduction of evidence based screening thresholds. The Cancer Network believes that, with an appropriate system-wide approach to service improvement, these changes to the screening programme could be brought in ahead of the current proposed timeline of 2023.
12. Within the current screening programme, some health boards are finding it challenging to see screen detected suspected cancers within target timescales. The Cancer Peer Review programme has found that, in some health boards, for those patients that require on-going surveillance (e.g. where polyps have been detected) there is insufficient capacity to provide surveillance colonoscopy within the recommended standards, which can mean that some patients develop cancer whilst waiting for their surveillance colonoscopy (interval cancers). A national system-wide approach to improving access to endoscopy services, delivered through the national directed programme for endoscopy (para 22) and the Cancer Implementation Group’s Bowel Cancer Initiative (para 23) will undoubtedly help to address this.
The long term and sustainable solutions to the challenges that exist within endoscopy services in Wales, including how data on diagnostic staffing pressures is being used to inform decisions about current and future workforce planning
13. The increasing demand has not yet been addressed by a sustainable increase in endoscopy capacity (activity, infrastructure or workforce).Most health boards have a shortage of gastroenterologists, and there is also a lack of availability of non-medical endoscopists; in Wales, there is also a disparity of pay grade for nurse endoscopists compared to England. It is anticipated that this will be addressed as part of the national directed programme for endoscopy.
14. Short-term improvements in waiting times for endoscopy have often been achieved by the use of insourcing and outsourcing, utilising external providers.
15. In developing a sustainable service, there needs to be an on-going commitment to increasing the number of gastroenterologists and other medical endoscopists but also to developing nurse and other non-medical-endoscopists. We believe that this would benefit significantly from a national approach in support of work at both national and local levels. The recent development of the Imaging Academy could provide a model for Wales in increasing the endoscopy workforce.
Consideration of other early diagnosis interventions and innovation, such as the introduction of FIT testing by general practitioners in symptomatic patients to reduce referral for diagnostic tests
16. There is emerging evidence (NICE Diagnostic Guidance 30) for the use of FIT testing in symptomatic patients to supplement the current ‘alarm’ or ‘red flag’ signs/symptoms that underpin the NICE referral guidance for urgent suspected cancers (NICE NG 12). This could significantly reduce the demand for endoscopy services by identifying those people who present with symptoms that could be related to colorectal cancer, but who are actually at a ‘low-risk’ of having cancer. Services in Wales should participate in pilots and/or research within a common framework of evaluation. We are working closely with health boards and other partners including the Welsh Association for Gastroenterology and Endoscopy (WAGE) and Health Technology Wales to develop a pilot for the use of FIT Testing in symptomatic patients.
17. This pilot would provide additional evidence for its effectiveness as a tool in primary and secondary care as well as ‘real-life’ experience in setting up and implementing such a service, which could then be shared across Health Boards.
Efforts being taken to increase uptake of the bowel screening programme
18. In 2016/17, the uptake for bowel screening fell by 1% to 53%. Uptake is significantly lower in the most deprived areas of Wales when compared to the least deprived areas (43.6% and 60.6% respectively). It is hoped that the new FIT test will lead to an increase in uptake but it is clear that more work is needed to increase the uptake, especially in ‘hard to reach’ groups such as BME communities and in particular deprived communities. The Scottish Detect Cancer Early programme is targeting social marketing campaigns to C2DE individuals who are less likely to participate in screening.
19. There are a number of initiatives underway led by Bowel Screening Wales looking at improving the way the screening programme operates, and by third sector partners including Cancer Research UK’s primary care facilitator programme in Wales which provides support and advice to primary care in increasing screening uptake in their practice
Conclusion
20. We believe that Wales will need to plan for a sustainable increase in endoscopy capacity of the order of 10-20% to meet the forecast increases in demand.
21. There also needs to be a national coordinated programme of service improvement such as standardised pathways, training a new workforce, IT developments, capacity and demand modelling, research and evaluation, as well as the development of regional/local service delivery models. Work on developing and implementing these plans need to move at significant pace if the introduction of screening at an appropriate age and at a lower threshold are to be achieved, and improvements to patient outcomes delivered. This requires both a coordinated national approach as well as regional and local initiatives. This would undoubtedly improve patient experience and survival. The Cancer Network will work with NHS Wales and other stakeholders to take this work forward as part of the planned Bowel Cancer Initiative (see para 23) and as part of the national directed programme for endoscopy (see para 22).
22. The NHS Wales Health Collaborative, of which the Wales Cancer Network is a part, is providing support to the national directed programme for endoscopy recently announced by the Welsh Government. This work programme is being led by a reformed Endoscopy Implementation Group, co-chaired by the Deputy Chief Medical Officer and the Deputy NHS Chief Executive. A multi-disciplinary workshop involving all health boards, Welsh Government and the third sector will be held on 12 December 2018 to launch this work.
23. In addition, the NHS Wales Cancer Implementation Group has recently agreed to establish a Bowel Cancer Initiative (BCI) Programme to provide national strategic direction and co-ordinate a number of different initiatives across NHS Wales to improve the services and outcomes for people diagnosed with, suspected of having, or at risk of bowel cancer in Wales, some of which have been detailed above. This work is supported by Bowel Cancer UK and other third sector partners. The BCI Programme will work closely with the Endoscopy Implementation Group.