Probe Blog - Patient Support for Barretts Oesophagus

Probe, West Yorkshire

After a couple of stalled attempts, the new group for West Yorkshire was launched on  February 21 at the Cedar Wood Hotel, J24 M2 near Huddersfield, with a  an attendance of around 30, ‘encouraged’ by Dr Pulak Sahay, Consultant Gastroenterologist at Pontefract.

Most of the people who signed up were his  patients. From that group, a small core met up at Ossett in March  and April, and our plans include an information event for September when there will be a raffle.

Our next planning meeting will be  on 17 July at 7.00.

Phone Robin for details.

We have also dealt with a couple of enquiries.

If you wish to get involved, phone Robin Thomas, 01422 835250 or email: robin_thom05@hotmail.com

We are trying to build up membership and levels of activity, so please make contact.

Successful 1st AGM for 2007

PROBE members and friends had a wonderful opportunity to get up to date on issues surrounding Barrett’s Oesophagus at the 1st  Annual General Meeting held on Saturday March 17 at Roehampton Club, London.

AGM Details:

As it is still a newish body, the election to the committee featured mainly existing officers, but in time we expect new blood and rotation. For the record, the officers elected are:

• Chair: Robin Thomas
• Vice-Chair Derek Larcombe
• Secretary: Fred Busch
• BOF Trustee Representative : Charles Marchant-White
• Treasurer: David Fletcher
• Committee Members
  • Cyril Cleary
  • Janet Kimble

(we do need additional members who can be co-opted. Please tell a committee member if you are interested.

Main points covered at the AGM:

• Website and blog  up and running
• Financial systems in place
• Branches set up, Wessex, Cambridge, West Yorkshire

We were addressed by the newly elected Chair of the Barrett’s Oesphagus Foundation, Dr Paul Salmon, who gave details  of his vision for both BOF and PROBE, including a target to raise £1million over the next two years, from a range of sources including individuals, local groups and corporate donors.

There were 3 key medical presentations.

1. Florian Bazant-Hegemark, from the Biophonics Research Group, Gloucestershire Royal Hospital and winner of the PROBE award for the best lay paper to the British Society of Gastroenterologists, spoke about significant progress  in Optical Coherence Tomography for the assessment of the Oesophagus.  This involves  collection of much greater information than from standard endoscopies and points to more accurate diagnosis and treatment
2. Dr Rebecca Fitzgerald, Consultant Gastroenterologist/Head of Research Team at Hutchison MRC, Addenbrooks, Cambridge, covered the nature of Barrett’s Oesophagus and updated the group on her latest research, especially on new methods of diagnosis (‘the sponge’) and possible family patterns.
3. Dr Krish Ragunath, Associate Professor & Consultant Gastroenterologist, Woolfson Digestive Diseases Centre, Nottingham University Hospitals, described exciting developments in the use of a high definition endoscope to improve diagnosis and treatment. This new piece of equipment mirrors the rapid development in television technology and provides a powerful new tool for examination, analysis and treatment.

Support

PROBE is very grateful to  Keymed/Olympus for sponsoring this event. Thanks are also due to Roehampton Club for generous support and to Fred Busch for financial assistance.

Future AGMs

We want to continue with the practice of inviting distinguished, world-renowned speakers to our AGM. It provides at least one opportunity to find out from the experts what is going on. To make this more successful, we will agree a date well in advance and post it on this website. London would seem to be the best place at the moment to attract people and a Saturday at least gives provincial members a chance to attend. However, we are open to suggestions for the future because we need more people to attend the AGM.

Comments please on the Patients’ Forum

Papers for Submission

On Wednesday 17th January, members of PROBE are judging the effectiveness of a number of papers on medical research into Barrett's Oesophagus.  Two the three short-listed papers are available for download here as PDFs.

Non-endoscopic screening test for Barrett’s oesophagus
Pierre Lao-Sirieix

Download pierre_laosirieix_barretts_meeting_uclh.pdf

Optical Coherence Tomography for assessment of the Oesophagus –
Non destructive real time sub surface scanning.
Florian Bazant-Hegemark, Samuel Cheung, Ricky Wang, Nick Stone, Hugh Barr.

Download OpticalCoherenceTomography.pdf

Presenting a Clear Message on Oesophageal Research

In a novel approach to the presentation of scientific papers, members of a patient network are judging the effectiveness of a number of papers on this key area of medical research.  At a special event, to be held on Wednesday January 17, hosted by the Barretts Oesophagus Foundation, three short-listed presentations will be judged and the winner will receive £600, with smaller prizes for the runners up to support attendance at an international conference.

The event takes place at University College London Hospital,  in  the Gastroenterology Seminar Room, 2nd Floor Podium, UCH, 235 Euston Road, London NW1 from 12.30 - 5.30 pm.

The Barretts Oesophagus Foundation--the UK's only charity devoted to research into Barretts Oesophagus and Oesophageal Cancer - has organised this meeting to discuss research progress in this area. Barretts Oesophagus is a change in the condition of the Oesophagus, which for a small number of patients can progress to cancer. This is one of the fastest growing cancers in the developed world with around 6,000 deaths annually in the UK.

This is why the research is so important, because the causes are not fully understood and diagnosis and treatment needs to develop in response to this major problem, as current cure levels for Oesophageal cancer are unfortunately very low.

PROBE is the newly formed patient network for the Foundation and they have an urgent task to raise awareness and funding for research. Thirteen abstracts of research papers, presented to achieve maximum clarity for a lay audience, were submitted and three out of what were all of a high standard, have been short-listed. These three will make a full presentation on 17 January, and the person judged to have presented a complex topic in the most user friendly way will receive the cheque from a PROBE committee member.

So, a small step for the patient network, but maybe the beginnings of a greater leap in the extension of awareness and support for this serious medical issue. Some excellent work is going on in this crucial area, hence the high standard of all the papers.

With PROBE's support, perhaps we can generate much more funding for this research, perhaps something of a Cinderella in the current climate of competition for funding, but ready to dance on the national stage.

For further information, please visit www.barrettsfoundation.org.uk

Read John's Story

Thanks to John Clarkson for sending his account of the lead-up and discovery of Barrett's Oesophagus and the subsequent treatment he received at Addenbrooke's Hospital.
Read John's account here.