Author: Lynch Syndrome Ireland

“Patients cannot exist in a policy vacuum, continuity, foresight, and accountability are essential components of public trust in healthcare systems.

National strategies shape not only clinical pathways, but also questions of equity, trust, access, accountability, and the lived experience of illness.

When there is no ownership, no timeline, and no transparent process for renewal, uncertainty is transferred onto patients and families already carrying immense emotional and structural burdens.” Pamela Deasy(Patient Advocate)

https://www.linkedin.com/posts/fail-to-prepare-prepare-to-fail-we-need-ugcPost-7464711709115686913-Y_Pz/?utm_source=share&utm_medium=member_desktop&rcm=ACoAABs3g3EBzKjRijqM-dZ6l7MG8TrOKYFA0ws

• A biobank collects biological samples and linked medical information from volunteers to help researchers study diseases and improve patient outcomes. 

• Plans by St James’s Hospital to create Ireland’s largest shared medical biobank, storing patient samples and health data to support future research and treatments. 
• The project has received about €10 million in funding from the Health Service Executive and is expected to become operational within roughly two years. 

• Prof Colm Bergin said the aim is to combine patient data, samples and diagnostics under strong ethical and regulatory oversight to improve healthcare outcomes. 
• Unlike many existing Irish biobanks that focus on single diseases, the new system is intended to be broad and “agnostic to condition,” potentially including all patients accessing healthcare services. 

• Programme manager Dr Suzanne Bracken said the long-term ambition is for the facility to grow into a national or even European biobank hub by the 2030s. 
• Doyle said she hopes wider participation will eventually contribute to cures for illnesses like leukaemia, calling the chance to help future patients “very powerful.” 

https://www.irishtimes.com/health/2026/04/27/eventually-there-will-be-a-cure-patients-donate-to-new-biobank-in-hope-of-aiding-research

Key Takeaways

• A negative predictive test in an at-risk first-degree relative can abruptly relieve years of hyper vigilance, catastrophising, and inherited-cancer anticipatory grief. 
• A multigenerational pattern of early-onset colorectal cancer and subsequent biliary tract malignancy illustrates the lived reality of Lynch-associated penetrance and variable tumor spectrum. 
• Inherited phenotypic resemblance can amplify concern about unseen pathogenic variants, highlighting how identity, family memory, and genetic risk perception interact. 
• Avoidance of lifelong colonoscopic surveillance, prophylactic interventions, and downstream costs reframes educational and life planning, particularly during major transitions such as graduate training. 
• Equitable access to genetic counselling/testing and informed consent remains central, given divergent outcomes across families and the enduring burden for those who test positive.

Unfortunately in Ireland you may have to wait, at the moment, for up to 3 years in the Public System for a Genetic Test.

https://www.curetoday.com/view/the-genetic-albatross-ends-with-me?fbclid=IwY2xjawSA0l5leHRuA2FlbQIxMQBzcnRjBmFwcF9pZBAyMjIwMzkxNzg4MjAwODkyAAEeGq3DhW33kSmDz7ybs_AyoOZ9BOPK5nsWxsBsrv3blcx8_JnLLWszS-5Rc9w_aem_bWGFrNFEFa53qBuysjUniQ

Fragmented patient information is (in my view) the number one patient safety issue.

Who’s information is it anyway?

Ideally the Patient should be the Lead Data Controller: By default, every individual should be the controller of their own health record.

Proxy Authority: Patients should have the seamless option to grant proxy authority to their GPs or other clinical specialists if they prefer.

https://www.theguardian.com/society/2026/may/10/gps-and-hospitals-in-england-to-be-required-to-share-data-to-create-single-patient-records

The Easy Peasy Guide to MRI
The complete plain-English overview for every man who has just been told he’s getting an MRI – what’s involved.

https://www.linkedin.com/posts/gordon-m-aa91354_guide-2-ugcPost-7454586469958111233-igbq?utm_source=share&utm_medium=member_desktop&rcm=ACoAABs3g3EBzKjRijqM-dZ6l7MG8TrOKYFA0ws

There is no screening for Ovarian Cancer and symptoms can be vague.

Some common symptoms are reflected in the #BEAT acronym. Know what is normal for you and if it changes get it checked out with your GP.

Key Takeaways

• Platform cultures differ markedly across Instagram, TikTok, and X, producing divergent informational ecosystems that can skew perceived norms, risks, and expectations for people with hereditary cancer syndromes. 
• Visibility remains inequitable, with dominant imagery favoring reconstructed, normative survivorship and marginalising flat closure, stoma, male, LGBTQ+, and non-White experiences, amplifying isolation. 
• Content creation functions as uncompensated caregiving labor, including crisis messaging, education, and emotional support, often performed during illness and recovery with minimal structural support. 
• Moderation and algorithms can penalise medically relevant recovery images and suppress high-effort posts, contributing to burnout, self-censorship, and reduced dissemination of credible patient narratives. 
• Community-generated support can be clinically consequential by normalising preventive interventions, countering misinformation that spreads faster than facts, and fostering timely care-seeking and shared decision-making.

“Being honest and accurate on social media matters, even when it is tough and the algorithm works against you.

This research is a reminder: our stories matter, and our voices bring hope and connection to those searching for support. Moving forward, it’s crucial for all of us to keep working together, be mindful of the content we create, and build a space where everyone feels seen and heard.”

https://www.curetoday.com/view/cancer-previvors-and-social-media?fbclid=IwY2xjawRn1nlleHRuA2FlbQIxMQBzcnRjBmFwcF9pZBAyMjIwMzkxNzg4MjAwODkyAAEemPGFJxzsNwZmdtoRSHAF6lT0PR_Yfjh-Qjo3Jp7PQ7f3FOZeCNJGSoXj2pc_aem_CDcVJ2bvjErBZ7q7Co_-bw&brid=YWdncwHWxAS3LyzhYjhhVNB49rZi

On 1st April BowelScreen increased the eligible age range to 57-71.

A simple easy free test carried out in your own home.

If you are in this age range…Is your GP aware that you have/have not taken this test? Should they be aware?

Less than 50% offered this test avail of it….WHY?

• BowelScreen invite people for screening every two years
• 57-year-olds can expect their first invitation for bowel screening between their 57th and 59th birthday
• People aged 71 who have previously taken part will be offered their next test when they are due
• If you have never taken part in bowel screening and are in the age range, you can request a free test kit using the online register at hse.ie/bowelscreen
• Most eligible people are on their register. If you haven’t received a test when expected, you can visit hse.ie/bowelscreen to check you are on our register, provide your contact details, and find out when your test is due.

Benefits of Screening

• Prevention: The test can identify precancerous polyps before they develop into cancer.
• Early Detection: Finds cancer early, when it is easier to treat, increasing the chance of recovery. 

https://pmc.ncbi.nlm.nih.gov/articles/PMC12978617/#sec17