Stormont returns - time to deliver

The return of the Stormont Executive and appointment of Robin Swann MLA as the Minister of Health and Social Services presents an opportunity to finally dust down the Cancer Strategy for Northern Ireland. It means Stormont can start delivering actions that will improve services and patient outcomes. 

Over the past two years throughout the stalemate at Stormont, little or no progress has been made in delivering the commitments within the strategy. While the politicking continued bowel cancer did not wait, and over 2,300 people living in the country were diagnosed with the disease during this period.    

Northern Ireland still lags well behind the rest of the UK nations for cancer treatment waiting times, lowering the bowel screening age to 50 and sensitivity thresholds of the screening test. 

Worst cancer waiting times across the UK 

Over four years ago, ministers set a target of 95% of people to start treatment within 62 days of an urgent referral. No Health and Social Care Trust in Northern Ireland has ever achieved the target. 

The latest data published in January once again highlights the challenges the newly appointed minister will face to resolve bowel cancer diagnostic and treatment waiting times. During the period January to September 2023, on average only 18% of bowel cancer patients began treatment within the target. This was the lowest performance across the UK nations. 

Bowel cancer is treatable and curable especially if diagnosed early and nearly everyone survives if diagnosed at the earliest stage. However, this reduces significantly as the disease develops, meaning quick and accurate diagnosis is key to saving lives. 

Northern Ireland lagging behind in bowel screening 

The UK’s National Screening Committee (UKNSC) recommends that screening for bowel cancer should be offered every two years between the ages of 50 and 74 using the faecal immunochemical test (FIT).

UKNSC also recommends that the bowel screening FIT threshold should be set at a level of 20 µg/g which is a measurement of haemoglobin (a protein found in red blood cells) per gram of poo. A reading above this level is not necessarily an indication of the presence of bowel cancer, as there are other non-cancerous conditions which will also present with blood in the poo. To be safe, patients with a reading above the level which has been set as the baseline are referred for further investigation.  

While welcome, the only progress in Northern Ireland towards achieving the UKNSC bowel screening recommendations has been the recent lowering of the threshold to 120µg/g. This is higher than the UKNSC recommends, so it's less sensitive.   

The age limit for screening in Northern Ireland remains at 60 years, which falls well short of UKNSC recommendations. This exposes people aged 50 to 59 to the risk of a later stage bowel cancer diagnosis. The Northern Ireland Executive included the UKNSC recommendations within the Cancer Strategy for Northern Ireland. Due to the lack of political leadership and access to funding, no progress has been made in achieving this ambition.   

Lynch syndrome 

Lynch syndrome is a genetic condition which increases a person’s risk of developing bowel cancer by up to 80%. It's estimated that 175,000 – 200,000 people across the UK have Lynch syndrome but less than 5% of people have been diagnosed.   

Our recent report highlighted several shortcomings including gaps in data collection and reporting. As well as the absence of Lynch syndrome champions across all Health and Social Care Trusts who can help drive forward improvements. The report recommends a register of patients with Lynch syndrome should be established. This can help improve Northern Ireland’s management and support of people diagnosed with the condition. It would be the first step in moving surveillance within the national bowel screening programme, as is the case in England.  

What needs to happen? 

The minister will face a heavy workload in the coming months. However, we make no apology for calling upon him to ensure that routes to bowel cancer diagnosis and treatment are at the top of his list of priorities in the coming weeks and months. 

The diagnostic bottleneck we see through the 62-day waiting times data is down to insufficient workforce and equipment capacity. It falls well short of commitments made within the Cancer Strategy for Northern Ireland. 

Waiting on the outcome of diagnostic tests for cancer can be stressful, not only for the patient but also for their family. Research indicates that 73% of people living with cancer can experience poor mental health. The poor performance in achieving timely diagnosis and treatment in Northern Ireland needs to be addressed as a matter of urgency. NHS staff are doing their absolute best to deliver a high-quality service, but they’re facing an uphill battle and need full support from the minister. 

Reducing the age limit for bowel screening to 50 years and the FIT threshold to 20µg/g will ensure that bowel cancer can be diagnosed earlier and, in some cases, prevent it from developing in the first place. The minister needs to deliver on the Cancer Strategy commitment to improve bowel cancer screening without delay. 

Patients diagnosed with Lynch syndrome need proper surveillance and should be provided with wraparound care and support for their mental health and well-being. The minister needs to deliver on the Cancer Strategy commitment to improve genomic services, like Lynch syndrome, as soon as possible. 

What we’ll do 

• We’ll continue to campaign for vital improvements to ensure bowel cancer waiting times are reduced 

• We'll continue to campaign to lower the bowel screening age to 50 and reduce the sensitivity thresholds of the test in Northern Ireland to meet UKNSC recommendations 

• We’ll continue to campaign for the appointment of Lynch syndrome champions across all Health and Social Care Trusts and the introduction of a Lynch syndrome patient register 
  
  

After so much time has been wasted, with Stormont now sitting again, it is time to deliver on the promises of the Cancer Strategy for Northern Ireland. It’s time to deliver for bowel cancer patients in Northern Ireland.

• Learn more about our campaigning on Lynch Syndrome
• Find out the symptoms of bowel cancer
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