Blog

NCCP

National Cancer Strategy states: The NCCP provides leadership across the continuum of cancer care.

The overall strategic input and impact of the NCCP will continue to be in the following areas:

Leading on the implementation of cancer policy and on
the development of cancer services including in the areas
of prevention and survivorship;
Defining evidence-based guidelines and practice in cancer
care;
Commissioning and monitoring service provision;
Leading on the implementation of capital projects to
ensure optimum patient access to diagnostics and
treatment; and
Developing programmes to promote best practice in
cancer care, including workforce planning and education/
training programmes.

In the New HSE structure NCCP ” appears to have been operationally sidelined.” per https://x.com/mccarthymt7/status/1864072001197125715

Do you agree?

My Palliative Care Journey

Written by Clodagh Downing: Upon discharge from hospital, I was told that I would be included in Palliative Care in the community which means that I attend the local hospice.

Not everyone who attends their hospice as a patient dies from their disease but many do. Life is part of death and death is part of life. Isn’t it peculiar how we can spend our entire lives running away from the grief and sadness of death?

Clodagh passed away a few days ago surrounded by her family in St. Francis Hospice, Raheny .

She will be sadly missed by all who knew her but she left behind a wonderful legacy.

https://peakd.com/health/@clodaghdowning/my-palliative-care-journey

Prostate Cancer Survey

The PRO-ACT Survey is live! Developed with input from patients, partners, & healthcare professionals, this study explores the impact of prostate cancer treatment on sexual well-being and mental health.

The hope is that the insights gathered will improve care and support for patients in the future.

https://bit.ly/4gbjMTG

The findings will identify gaps in current services and communication, helping to develop resources that provide more holistic and effective support.

Survey links:

Patient Survey: https://www.surveymonkey.com/r/YGNKN5T

Partner Survey: https://www.surveymonkey.com/r/2WC2J38

A genetic mutation can save lives – Lynch syndrome paves the way for cancer vaccines and personalised treatments

While Lynch syndrome increases the risk of cancer for its carriers, it also provides a unique opportunity to understand disease mechanisms. It is likely that the first preventive cancer vaccine will be specifically developed against cancers caused by Lynch syndrome.

From the individual’s perspective, Lynch syndrome and its prevalence in the population is not a positive thing, but from the research standpoint it is, meaning that the disease can also benefit patients.

“Currently, there is intense development work on cancer-preventive vaccines, which will soon be tested in large patient groups. The most progress has been made with cancers linked to Lynch syndrome. It will be a major breakthrough when we can prevent cancers that we know are likely to develop,” Seppälä says.

In Lynch syndrome, identifying carriers of the genetic mutation is vital because healthcare interventions can greatly benefit these patients. Generally, there needs to be greater awareness in society about the importance of molecular profiling. 

https://www.tuni.fi/en/news/genetic-mutation-can-save-lives-lynch-syndrome-paves-way-cancer-vaccines-and-personalised

The life of a forever patient simply isn’t a cakewalk.

“While I am thankful and a bit excited to try out the new hardware in my body, there were some hiccups with the process that made it needlessly stressful.”

“I wish I could say otherwise, but I am starting to believe that we patients and our trust and comfort will never be true priorities.”

https://twitter.com/AMJohnston1315/status/1496214903870394370?ref_src=twsrc%5Etfw%7Ctwcamp%5Eembeddedtimeline%7Ctwterm%5Escreen-name%3AAMJohnston1315%7Ctwcon%5Es1

‘Some good friends disappeared from my life’

What I really didn’t expect was some good friends of many years who I had spent a lot of time with simply disappeared out of my life. Some people said, “they obviously weren’t real friends” and initially I agreed, but I now try and be a bit more charitable. I think they probably couldn’t deal with the thought of someone they knew so well having a life-threatening disease or didn’t know what to say.

Tony, 63 was diagnosed with stage 3 colon cancer following a colonoscopy in late 2021, and had surgery and six months of chemotherapy.

He is aiming for a 50-mile run/walk competition in the Lake District in July 2024.

https://www.mission-remission.com/runningforrecovery

The Cancer Gene More Men Should Test For

BRCA mutations are inextricably linked with breasts, but they can also lead to cancer in the pancreas, the prostate, and maybe more parts of the body.

As many as 60 percent of men with changes in BRCA2 develop prostate cancer, yet men are generally far less aware than women that BRCA mutations can affect them at all.

Roughly one in 400 people carry a harmful mutation in BRCA1 or BRCA2, and half of them are men. But women are far more likely to have been tested for the mutations—up to 10 times as likely, according to one study.

https://www.theatlantic.com/health/archive/2024/11/brca-breast-cancer-men-prostate-pancreas/680698/?utm_source=Live+Audience&utm_campaign=dd571a2816-nature-briefing-cancer-20241128&utm_medium=email&utm_term=0_b27a691814-dd571a2816-49365116

UCC researcher to develop a third-level cancer care educational programme to support patients

The GENE-ONC Education programme will support healthcare providers and cancer patients by integrating the study of a person’s genes (Genomics) into routine cancer care through both undergraduate and continuing education programmes. Genomic information and data are increasingly used to inform diagnosis and the choice of treatment strategies supporting much more tailored approaches to the management of cancer.


https://www.ucc.ie/en/news/2024/ucc-researcher-to-develop-a-third-level-cancer-care-educational-programme-to-support-patients.html

Genotes – a ‘just-in-time’ genomics education resource co-designed with clinicians

Have you heard about #GeNotes? Flagship resource of NHSE

@genomicsedu
designed to support clinicians in requesting and managing complex genomic tests – read all about it!

Powerful new genomic technologies are transforming the way healthcare is delivered, shaping medical practice across all specialties. In this rapidly changing landscape, there is an urgent need to equip the clinical workforce with knowledge and skills to navigate the new healthcare terrain.

They describe the co-design and co-creation of the GeNotes genomic education resource by clinicians, for clinicians. We anticipate that this approach will have relevance and utility for other educators attempting to meet the needs of a diverse set of end-users in similarly fast-moving fields.

https://link.springer.com/article/10.1186/s12909-024-06059-w

Caregivers

Another incredible example of dedication, compassion & tireless efforts of a caregiver providing essential support to loved ones with #LynchSyndrome

https://twitter.com/CGAIGC/status/1861524889976610937