Urgent improvements needed for Lynch syndrome care across Scotland

We’re campaigning to improve the diagnosis and care of people with Lynch syndrome. As part of this work, we bought together academics, clinicians, and policymakers for a roundtable discussion to make real changes for people with Lynch syndrome living in Scotland. In this blog, we show how important this work is, why we urgently need to see improvements in Scotland and what we’re doing to make this happen. 

Why are we campaigning to improve the care of people with Lynch syndrome?

Lynch syndrome is a genetic condition that increases a person’s risk of developing several cancers, including bowel cancer. The condition is estimated to cause about 1 in 30 cases of bowel cancer, many of which are in people aged under 50.  

People with Lynch syndrome need lifelong care to help manage their increased risk of developing bowel cancer. Once diagnosed, they should be offered the best standard of care. This includes a range of risk-reducing options: 

• receiving high-quality surveillance colonoscopies every two years 

• taking a daily dose of aspirin as prescribed by a GP  

• undergoing preventive surgery 

In Scotland, this isn’t happening consistently right now. 

Why urgent improvements are still needed in Scotland 

Thanks to national leadership and clear guidance, Scotland has made important progress in testing for Lynch syndrome since 2018. Today, nearly everyone diagnosed with bowel cancer gets tested for Lynch syndrome before starting treatment (this is called ‘reflex testing’). This means two key things: 

• patients diagnosed with Lynch syndrome can receive personalised care to treat their cancer 

• their family members can be offered testing (this is important, as Lynch syndrome runs in families) 

These improvements show how national leadership can bring about real change. Unfortunately, issues remain in other areas of Lynch syndrome care.    

For example, Lynch syndrome is still underdiagnosed in Scotland. There are many reasons for this, including issues around getting a formal diagnosis and encouraging family members to get tested for the condition.

There are also concerns with how the condition is managed. We highlighted this in our 2024 report on Lynch syndrome services which showed that nearly half of Scottish Lynch syndrome patients are not receiving their colonoscopy within the recommended two years. We also know that a lot of patients are not taking aspirin daily to reduce their risk of bowel cancer.  

These issues mean that preventable cancers are being missed or diagnosed at a later stage. This is unacceptable and shows why improvements are needed urgently. 

Insights from Scotland's experts  

On Tuesday 10 June 2025, we brought together academics, clinicians, policymakers and other thought leaders from across Scotland to discuss Lynch syndrome care.  

The discussion covered the current state of Lynch syndrome services, as well as ways to improve caring for the condition. 

Broadly, everyone agreed that the current management of Lynch syndrome is not good enough, with some of the barriers including:

• a lack of prioritisation for Lynch syndrome surveillance, meaning too many patients are waiting too long to receive colonoscopies 

• outdated national guidelines for managing Lynch syndrome, leading to inconsistent and uncoordinated care 
• a poor understanding of who has Lynch syndrome in Scotland, and who is responsible for managing them 

To fix this, we identified opportunities such as: 

• creating a national patient database for Lynch syndrome and other inherited bowel cancer conditions. This has the potential to improve surveillance, aspirin prescribing and how services are measured 

• publishing updated national guidelines on Lynch syndrome management to make sure that a single pathway is in place and visible to clinicians 

• encouraging Health Boards to appoint ‘Lynch syndrome champions’ to oversee the pathway, act as a point of contact, and help patients receive consistent and coordinated care 

Turning talk into action and why it matters 

It's essential that we get Lynch syndrome care right in Scotland.  

By making sure that everyone with Lynch syndrome receives appropriate and timely care, we can detect bowel cancer earlier, manage it better and even prevent it from occurring altogether. 

The roundtable has helped us to understand which steps are needed to deliver these ambitions and support improvements across Lynch syndrome care.  

We'll continue to work on this by: 

• forming a working group to support the creation of a national patient database 

• working with partners across NHS Scotland and the third sector to make sure that new national guidelines for Lynch syndrome care are published and made visible to clinicians 

• creating a statement with our roundtable experts that highlights urgent need for improvements in Lynch syndrome care 

Get involved 

We’re still looking for Lived experience campaigners in Scotland, Northern Ireland, and Wales.  

If you have experience of bowel cancer in the last three years and are interested in helping us develop our campaigns, we’d love to hear from you.