Author: OPA

An online focus group looking at how you would like your child to be treated for gastro-oesophageal reflux disease (GORD)

We are currently working in collaboration with Reckitt Benckiser PLC regarding a funded research study exploring the experiences of parents of infants with symptoms of gastro-oesophageal reflux disease (GORD), or reflux for short.

Study Summary

“What: A 60-minute discussion about your preferences for managing your child’s symptoms of GORD

Where: Zoom

When: To be decided

Will I be reimbursed: Yes, we are providing £60 as a bank transfer for participation in the research.

Who is this for: The research is being conducted on behalf of Reckitt Benckiser Group plc. Anonymised data (without personally identifiable information) will be shared with the funder.

Why are we conducting this research: We wish to better understand how parents of children with symptoms of heartburn and/or indigestion wish for their children to be managed.

What happens if I agree: You will be contacted (via e-mail) by a member of the research team who will provide you with additional information regarding the study, in the form of a participant information sheet. We will also provide you with a consent form. We will do this ahead of the date and time of the focus group, allowing you time to reconsider your participation if you wish. If you choose to take part the focus group will be conducted via Zoom and audio-recorded for later analysis. All responses will be kept confidential and no personally identifying information will be collected as part of the research study. You maintain the right to withdraw from the focus-group at any time.

Please read this document which explains the project in further detail- https://opa.org.uk/wp-content/uploads/2024/06/PIL-FOCUS-GROUP-PARENTS_v2.pdf

If you wish to be involved in the online focus group, email simon@visfo.health

Hi, I’m Claire, I’m an oesophageal cancer patient.

Two and a half years ago I started having trouble swallowing bread and chicken, it felt like the food was getting stuck in my food pipe and wouldn’t go down for up to a minute each time. Aside from that I was well and healthy – I hadn’t smoked for 25 years and I walked and went for 10-mile cycle rides three times a week. I ignored the struggle to swallow some foods for a couple of months, thinking it was nothing serious, just acid reflux or something like that. Luckily for me, my partner had known someone with oesophageal cancer and he knew this could be a symptom of the disease. He made me go to my GP, and thankfully she took the symptoms seriously too.

I was suddenly put on a fast-tracked pathway where I got the results from every test within two weeks. I believe that process, and my partner’s insistence about getting myself checked, saved my life. I was diagnosed with OC in September 2021, had chemo for four months then had an eight-hour operation to remove my oesophagus and the tumour in it. I’ve been slowly recovering ever since. It’s been a real slog, taking two years to go from six stone to eight, and be able to eat a range of different foods. But I won’t ever complain about this because I’m one of the lucky few – two thirds of the people diagnosed with oesophageal cancer find out about it too late to have the operation or anything else that can potentially save their lives.

That’s why I am passionate about raising awareness of this cancer – and the potential symptoms everyone needs to get checked out as soon as possible. They are having persistent heartburn or acid reflux, difficulty swallowing food, hiccups that won’t go away, unexplained pain in your chest and excessive burping or inability to burp. Suffer with any of these for more than three weeks and you have to get to your GP straight away to ask for a scan.

I’d never heard of oesophageal cancer until I was diagnosed with it, but I’d love other people to know it exists, so they can get treated and survive it instead of having it diagnosed too late

Foreword – Dame Cally Palmer, National Cancer Director

Cancer survival in England is at an all-time high due to the speed and scale of advances in diagnosis and treatment across the NHS. Our work on cancer really matters to people. As we live longer, more of us will develop cancer ourselves, or will have family or friends who are affected by cancer. We want more people to be cured of their cancer or supported to find a way of living their life well with it.

Continue reading…- Click here

Date published: 9 May, 2024
This information is from www.england.nhs.uk

“I chose to complete a wing walk for the OPA charity in memory of my dad, Nick Preston. I chose a wing walk because of the love of planes that me and my dad shared (however this does not mean that i was not extremely nervous lol). We had been to many air shows together along with my mom and sister and watched many wing walks so I wanted to do something different and relevant to raise money for the charity in memory of my dad.

The wing walk itself was absolutely amazing, from start to finish. I was shown a safety briefing to start with, explaining how to get on the aircraft, any hand signals to communicate with the pilot so he could check whether I was okay up there or not. I had a discussion with my pilot beforehand who asked how intense I wanted the wing walk to be and I of course asked for it to be the most adrenaline based flight possible. When actually in the air it was absolutely freezing as it was very windy however I can’t believe how safe I felt the whole time, it was so much fun I didn’t want to come down. We reached a height of around 400ft and around 150mph.”

“Why i chose the OPA:

Going back a few months, his symptoms had started in March 2021, unfortunately the severity of his condition was continuously missed by GP’s and he was wrongly diagnosed with a variety of minor illnesses such as chest infections and acid reflux. This continued for 3 months, until June 2021, when he was finally referred for an endoscopy, but devastatingly the cancer was missed yet again after he was wrongly diagnosed with a completely different and curable condition and received biopsy results stating ‘no cancer found’. It was when he went back a month later on 26th June for a ‘curative’ procedure that we were told that he had been misdiagnosed and he actually had Oesophageal cancer. This was obviously a huge shock and tremendous blow but we all tried to remain positive, especially my dad, whilst over the following months he went for further tests and procedures to find out what stage he was at and hopefully create a treatment plan. Sadly we didn’t receive the news we wanted and were told that he was stage 4 with the cancer having spread to his stomach and lymph nodes meaning a cure was not possible. Despite this, he still managed to maintained a positive outlook and never once moaned or asked why him. The plan was to start a treatment plan involving chemotherapy to help his symptoms and hopefully prolong his life. He started his first round of intensive chemo in October 2021, it was harsh on his body and gave him horrendous side effects meaning he was weak, tired and unable to continue working which was something that he really missed. Despite how tough everything was he persevered and his first scans after treatment were positive, showing a reduction in the size of the tumor, he was able to eat properly for the first time in months, something we were all so happy and relieved to see. Although the chemo appeared to be working it was also having a very negative effect on the rest of his body, meaning he needed blood transfusions and so the decision was made to reduce the strength of the chemo therapy drug, sadly this also meant that it was no longer as effective as his symptom and inability to eat eventually returned in March 2022, ironically it was exactly the same date that the symptoms had started the previous year.

The months that followed were tough for everyone, with the return of his symptoms he was once again unable to eat, meaning that not only was his body being ravaged by the chemotherapy he was growing weaker from not being able to eat. He continued having treatment, although by this point it was ineffective and the cancer continued to spread, eventually reaching his bones meaning he was in a great deal of pain. Despite this he continued to carry on taking each day as it came and maintaining a positive attitude for the sake of his family. With his condition deteriorating his oncologist applied for a place on an immunotherapy trial as a last bid to help his quality of life. He was accepted which was a beacon of hope to all of us but unfortunately in late August his condition deteriorated rapidly with him being in severe pain and barely able to stand up and he was admitted into hospital on the 26th August, the same week he was meant to start the clinical trial. We all thought this was going to be a short stay to rebuild his strength ahead of his new treatment but devastatingly that wasn’t to be and he passed away in hospital on the 5th September 2022.”

Thank you to Stacey Preston for sharing this story and choosing to support the OPA!

Introducing the three new OPA Publications.

  • Achalasia Leaflet
  • What is Gastric Cancer?
  • What is Oesophageal Cancer?

These publications can be downloaded to be viewed in a PDF document or Flipbook-
Downloads – The OPA

Or if you would prefer to order hard copies, you can do this on the OPA Shop-
Shop – The OPA

OPA: Empowering hope and health in the battle against oesophageal and gastric cancer 

Global Award Winner – Medical Awareness NPO of the Year 2023/24 

In the world of cancer charities, OPA Cancer Charity stands as a beacon of hope and support for those affected by oesophageal and gastric cancer. This organisation goes beyond the ordinary, raising awareness, providing exceptional support, serving as a first class research resource, and showcasing the dedication of their OPA team. In this article, we will delve into the remarkable work of the OPA and how it is making a profound difference in the lives of those facing these challenging cancers across the globe.

Raising awareness
One of OPA’s core missions is to raise awareness about the critical link between chronic acid reflux and the increased risk of oesophageal and gastric cancer. Through public awareness campaigns, educational seminars, and global online campaigns, they’re actively educating individuals about prevention and early detection. By shedding light on this connection, they’re saving lives.

Exceptional support provision
What sets OPA apart is their unwavering commitment to providing exceptional support for patients and caregivers. They offer a range of services, including patient buddy service, support groups, and guidance as well as a strong worldwide social media presence navigating the complex journey of cancer treatment. OPA’s support is personalised, ensuring that individuals receive the assistance they need.

“ONE OF OPA’S CORE MISSIONS IS TO RAISE AWARENESS ABOUT THE CRITICAL LINK BETWEEN CHRONIC ACID REFLUX AND THE INCREASED RISK OF OESOPHAGEAL AND GASTRIC CANCER.”

First-class research resource
OPA’s commitment to combating these cancers doesn’t stop at support services. They serve as a first-class research resource, funding research and collaborating with top scientists and medical professionals. By investing in research, they’re advancing our understanding of reflux, oesophageal and gastric cancer, exploring innovative treatments, and improving patient outcomes.

The dedicated OPA team
At the heart of the OPA’s success is its dedicated team. The OPA team works tirelessly to ensure that the charity’s mission is fulfilled. Their passion and commitment drive the organisation’s impactful work.

Success stories
To understand the impact of the OPA, we spoke with Melanie, a cancer survivor who benefited from their support. “The helpline provided me with a tremendous amount of support,” she says. “Their online resources really made a difference.” Melanie’s story is just one of many examples of the positive change that OPA brings to the lives of patients and caregivers.

Conclusion
The OPA, a cancer charity dedicated to raising awareness of acid reflux’s link to oesophageal and gastric cancer, stands as a model of exceptional support, research advancement, and dedicated
teamwork. With their efforts, they’re changing the narrative for those affected by these challenging cancers. They offer not just hope but a concrete path to improved health and well-being in the face of adversity. For more information, please visit www.opa.org.uk

Job Opportunity: Paid Role for Individuals Diagnosed with Barrett’s Oesophagus

Are you or someone you know diagnosed with Barrett’s Oesophagus? An exciting paid role opportunity has emerged for individuals with this condition.

Position: Paid Role

Requirements: Diagnosis of Barrett’s Oesophagus

How to Apply: Please email your details to enquiries@opa.org.uk

Don’t miss out on this opportunity. Send your details today to enquiries@opa.org.uk for further information.

A new podcast series hosted by TV presenter Julia Bradbury and recorded by patients of Guy’s and St Thomas’ has launched to support people who have been diagnosed with cancer.

The 10-part series Now What?, funded by Guy’s Cancer Charity, includes personal experiences from 11 current and past cancer patients at the Trust on cancer diagnosis, treatment and living with cancer.

Wendy Harris-Newland has undergone treatment and surgery at Guy’s and St Thomas’ since she was first diagnosed with stage 3 breast cancer in March 2018.

She said: “I wanted to give my knowledge – what I’ve learned through my experiences – to other patients, and to give back some of what I’ve received.”

Stream the series through: https://shows.acast.com/now-what-your-cancer-support-podcast/about

“The next Chatsworth Challenge fundraising walk in aid of the Dave Owens and Frank Goodall Memorial Fund will take place on Saturday 18th May 2024.

Join now to explore the wonderful Chatsworth House Estate and surrounding countryside areas of Derbyshire while supporting some incredible charities.

• Our walks take place within the picturesque Derbyshire Peak District.
• Both walks start and finish on Baslow village green, DE45 1SR.
• There are two fundraising challenge walks in one day. The distances are 22 miles or 9 miles respectively, the choice is yours.
• The Chatsworth Challenge is an annual event that first took place in 2003.
• This year’s Chatsworth Challenge will take place on Saturday 18th May.
• Start times: 22 mile leaves Baslow at 06:00, the 9 mile walk leaves at 11:00.
• The event is open to anyone who is prepared to raise sponsorship in aid of the four cancer related charities we support.
• Those charities are Cancer Research UK, Macmillan, Marie Curie & The Oesophageal Patients Association.
• All the information, photos, application forms you require can be found within our website pages.

Check out the previous walks here – Gallery – Chatsworth Challenge – Home

This information is extracted from the Chatsworth Challenge website, find out more here – Chatsworth Challenge – Home