2011 was a very busy year for Barrett's Oesophagus Campaign with development of a collaborative study between UKBOR (United Kingdom Barrett's Oesophagus Registry) & Harvard University (Professor Raj Goyal), and with funding achieved for both arms of the study. At this time formal registration of the study for UCL sponsorship has been achieved, Data Protection Registration and insurance confirmed and approval by the Research Ethics Committee is now being sought under IRAS (Integrated Research Application System). In addition to this a part-time Research Fellow with a funded training post has been appointed to conduct a case –control study on risk factors for development of adenocarcinoma (AC) in Barrett's for submission for an MD thesis. This training post will be based at the Royal Free hospital, London and will be supervised by Dr Christine Caygill and UKBOR's Executive Director, Professor Anthony Watson.
Joint Awareness Campaign ("Action Against Heartburn")
In last years's E-bulletin 1 we highlighted the need to raise awareness of Barrett's oesophagus and we are now pleased to report that we have played a significant part in developing and supporting a Joint Awareness Campaign on behalf of:
The Association of Upper GI Surgeons (AUGIS), Barrett's Oesophagus Campaign (BOC), Cancer Research UK (CRUK), Goddfund, OCHRE, Campaign Against Reflux Disease, National OesophagoGastric Cancer Awareness, and Oesophageal Patients Association (OPA).
Key messages of the Awareness Campaign include:
- Consult your GP if you have persistent (every day) heartburn, indigestion, persistent hiccups or food regurgitation, difficulty or pain on swallowing food, unexplained weight loss.
- Do not keep taking over-the-counter indigestion remedies week after week without seeing your GP for further investigations.
We have attended 4 joint meetings in London during 2011 and developed a document "The need for greater awareness of the symptoms of oesophageal and gastric cancer" ( 21 July 2011, amended 27 November 2011) with the aim of developing key messages targeting GP's, Pharmacies and the general public. The joint meetings have been ably chaired by Alan Moss (London Support Group Co-ordinator for OPA).
We have submitted our messages to a medical panel who have commended the document as a best effort to reflect the current understanding of the medical issues, particularly the links between acid reflux (heartburn) Barrett's oesophagus and oesophageal adenocarcinoma.
- William H Allum MB ChB MD FRCS, Consultant Upper GI surgeon, Royal Marsden Hospital, Sutton, Surrey
- Piers AC Gatenby MA MD FRCS, Department of Surgery, Royal Marsden Hospital, London
- Professor S Michael Griffin MD FRCS, Professor of Gastrointestinal Surgery, Northern Oesophago-gastric Unit, Royal Victoria Hospital, Newcastle upon Tyne
- Dr Jonathon Hoare MA PhD FRCP, Consultant Gastroenterologist, St Mary's NHS Trust and Imperial College School of Medicine
- Dr Charles DR Murray MD FRCP, Consultant Gastroenterologist, Royal Free Hospital, London
- Professor Liam Murray MD MFPHM MRCGP, Clinical Professor (Cons), School of Medicine, Dentistry and Biomedical Sciences, Queens University Belfast, Royal Victoria Hospital, Belfast
- Dr Praful Patel MD FRCP, Consultant Physician & Gastroenterologist and Honorary Senior Lecturer, Southampton University Hospitals NHS Trust
Professor Anthony Watson, Trustee of BOC and Executive Director of UKBOR, has been appointed Senior Medical Adviser to the Joint Awareness Campaign. A number of members of the joint group, including Dr Paul Salmon (Chair of BOC) and Dr Christine Caygill (Registrar to UKBOR) from BOC were invited by Professor Sir Mike Richards (National Cancer Director) to join his Expert Panel on Oesophago-gastric cancer, convened and chaired by him on 8th September 2011. Following this meeting the Department of Health allocated substantial resources (£750,000) to launch pilot studies in 7 UK regions in January-March 2012 in order to establish the importance and understanding of the key messages relating to the early diagnosis of oesophago-gastric cancer with some emphasis on heartburn.
The development of key messages continues and the current debate is active with our Joint awareness group and other groups and individuals pressing for greater awareness of Barrett's oesophagus, including abolition of the current 55 age limit suggested by the DOH below which those with heartburn/indigestion/swallowing difficulties would not be targeted. Emphasis on earlier diagnosis of Barrett's as an important goal in reducing deaths from oesophageal cancer (especially adenocarcinoma the most common and rapidly increasing form) remains one of our key aims, especially as data from UKBOR shows that 27% of cases of Barrett's at diagnosis are < 55 yrs of age and 12% of cases of adenocarcinoma of the oesophagus (gullet) are under the age of 55 at diagnosis. There are others who are fearful of their endoscopy clinics being overwhelmed with a possible delay in diagnosis of those who are developing oesophageal cancer. We do not believe that this will happen. The debate continues.
At the present time it is planned that the joint awareness group will continue a parallel campaign with the Department of Health initiative until the precise plans for the DOH campaign become established.
We are also developing plans and resources to produce a BMJ learning module which is an online learning and testing module for healthcare professionals who can then receive an up to date detailed account of Barrett's oesophagus. This module when completed will form part of the Joint Awareness Campaign. We have already opened a new website www.actionagainstheartburn.org.uk which can provide more information concerning this campaign.
During 2011 BOC was registered as a Stakeholder for NICE (National Institute of Clinical Excellence) in their Dyspepsia panel and their Early Diagnosis of Cancer panel. Paul Salmon will be attending the dyspepsia NICE meeting in Manchester in February 2012.
Alex Rose, a sixth form student in Harpenden has completed a Nuffield Bursary studying the progression of Barrett's oesophagus to adenocarcinoma. He has made it to the finals of the National Science Competition which will be held at the Big Bang Science Fair at the NEC in March 2012. Alex has approached BOC and we are collaborating with him to assist his excellent initiative. All of us at BOC wish Alex the best of luck and congratulate him on this initiative
Patient Support Services
BOC provides patient support in a number of ways:
- Encourage 'Friends of BOC' by means of subscription free local support groups who are invited to become affiliated to BOC but retain their independence. By doing this we offer our website and patients forum which give support to such groups
- Encourage and promote joint fundraising initiatives which can assist local support groups
- Provide a Medical Advisory Board to provide independent medical advice to BOC and support groups as required.
Barrett's Wessex, chaired by Chris Robinson, one of our Trustees, a regional support group of the national charity, Barrett's Oesophagus Campaign, continues to expand and thrive.
Barrett's Wessex is now expanding to establish a Bath/Bristol hub and a Bournemouth hub, whilst increasing support in Dorchester, Salisbury, Winchester, Portsmouth and Basingstoke.
A cyclist from Barrett's Wessex also undertook a marathon 2000 mile cycle journey unescorted across the Nullabor desert in Australia raising awareness via radio interviews.
The latest newsletter from Barrett's Wessex is available from the News page of their website: www.barrettswessex.org.uk.
The on-line patient support forum is also growing with 840 members currently, a quarter of whom have been active in the last 6 months. Thanks to the diligence of our web manager, we have been successful in eliminating the spam postings that have caused problems on other forum sites.
Most members live in UK but we also attract a significant number from overseas. Most new members find the forum following an internet search after being diagnosed with something they have never heard of. Most commonly they are worried about the chances of contracting cancer or seek dietary advice. Increasingly they tell us they are in their 30's or 40's. In a recent poll on the forum, 84% of responses were from members younger than 55. The BOC online forum far outstrips all comparable national and international forums (e.g healthcentral and mdjunction) receiving up to a dozen posts a day.
Clearly fundraising is a major responsibility for BOC with monies raised increasing our ability to achieve our charitable objectives.
London (Virgin) Marathon
In 2011 we had two runners in the London Marathon, Sharon Nayau and Nathan Moorey.
We also had a runner in the Great North Run, Katie Robinson who raised over £430 for BOC. In September Barrett's Wessex had 6 runners in the Solent Half Marathon raising over £1000 between them. Jo West also undertook a sponsored walk raising money in memory of her mum in September. Our heartfelt thanks go to all these generous people who for different reasons wish to support our work and who raised substantial sums between them. We now have a Wessex GP (Dr Li von Schack), a marathon runner who has earned a place in the 2012 London Marathon and who will be running on behalf of BOC , and a runner, Sophie Mann is participating in the Reading Half Marathon.
They may be sponsored via Just Giving here: www.justgiving.com/hertha-von-schack and www.justgiving.com/Sophie-Mann
Chris Robinson will be taking part in a sponsored cycle ride in the Netherlands, cycling a circular route from Hook and taking in Haarlem, Amsterdam, Amersfoort and Dordrecht cycling between 260-350 miles. Chris took part in a sponsored cycle ride in France in 2010 and the photo here shows him in a hospital gown with his cycle companion, the devil! Full details of the event may be found here: www.hayling-cycle-ride.org.uk
We are all most grateful to Chris for his continuing charitable cycle rides . Chris JustGiving page is: www.justgiving.com/Chris-Robinson3
In September 'Leanne' organised a dinner dance at a Surrey Hotel in memory of her dad, Gerard McDermot who had died from oesophageal cancer. This was very well attended and substantial sums were raised for BOC. We are extremely grateful to Leanne and her friends and colleagues.
During 2011 we were supported by 6 separate medical charities to whom we are especially grateful. Our wish is to increase the work we do but this is only possible with charitable donations.
We look forward in 2012 to a successful year with further progress, collaboration and expansion of our awareness campaign, research projects and support for patients and their families and friends with Barrett's oesophagus and cancer.