Appendices

Appendix 2

NICE Option Grid for the treatment of long term heartburn.

(a copy may be downloaded at the foot of this page)

Treatment of long-term heartburn Use this grid to help you and your healthcare professional talk about the options for treating heartburn that lasts longer than 4 weeks.

Barrett's Wessex is a regional support charity whose principal aim is "to reduce the number of deaths to oesophageal cancer through raising awareness of its predominant pre-cancerous lesion, Barrett's Oesophagus in Southampton, Wessex and beyond."

It has a very informative website at www.BarrettsWessex.org.uk, manages an on-line forum (BarrettsCampaign.org.uk/forum), a Facebook page /BarrettsWessex and a Twitter page @BarrettsWessex and holds regular drop-in sessions across the region.

It offers telephone and text support on 07771 567009 and email support at enquiries@barrettswessex.org.uk

The Barrett's Oesophagus Campaign (BOC) is a national charity "working to prevent cancer of the gullet".It has an informative website at www.BarrettsCampaign.uk, a Facebook page /BarrettsOesophagus and a Twitter page @BOCampaign.

BOC provides leaflets, "What is Barrett's Oesophagus" and "Treatments for Barrett's Oesophagus" downloadable from the Support/downloads page of their website, a telephone helpline on 020 7794 0500 Ext 23073 and email support at info@barrettscampaign.org.uk

Action Against Heartburn (AAH) is a consortium of the different charities promoting earlier diagnosis of oesophageal (gullet) cancer.

It runs awareness campaigns nationally and locally with the help of its constituent members, most of whom also provide their own support lines:

The Association of Upper GI Surgeons (AUGIS) - promoting establishment of high quality training programmes throughout the UK www.augis.org

Barrett's Oesophagus Campaign (BOC) - maintaining the UK Barrett's Registry, invaluable for researchers www.barrettscampaign.uk

Barrett's Wessex (BW) - the largest support charity for patients with Barrett's Oesophagus - covering Southampton, Wessex and beyond www.barrettswessex.org.uk

Campaign Against Reflux Disease (CARD) - "Tackle Reflux disease early so that you don't have to tackle its complications later!" www.cardcharity.co.uk

Cancer Research UK (CRUK) - pioneering research to bring forward the day when all cancers are cured. www.cancerresearchuk.org

CORE charity - Raising awareness and funding research into gut and liver disease www.corecharity.org.uk

Fighting Oesophageal Reflux Together (FORT) - working closely with experienced local and national clinicians to help patients by providing them with the best up-to-date information www.fortcharity.org.uk

The Gutsy Group - provides support for patients diagnosed with, or recovering from oesophageal cancer www.gutsy-group.org.uk

Heartburn Cancer UK (HCUK) - offering support and information to sufferers of heartburn, Barrett's Oesophagus and cancer of the oesophagus. www.heartburncanceruk.org

The Humberside Oesophageal Support Group (HOSG) - aiming to help anyone with oesophageal problems. www.hosg.org

The Michael Blake Foundation (MBF) - MBF exists to raise awareness of oesophageal cancer. www.michaelblakefoundation.org.uk

OCHRE charity - promoting awareness of oesophageal cancer amongst the public, professionals, politicians and patients www.ochrecharity.org.uk

Oesophageal Patients Association (OPA) - run by experienced patients helping new patients diagnosed with Oesophageal Cancer. www.opa.org.uk

Oesophagoose (National Oesophago-Gastric Cancer Awareness Campaign) - treating patients with oesophageal cancers it has developed an internationally recognised expertise. www.oesophagoose.org

Oxfordshire Oesophageal and Stomach Organisation (OOSO) - providing support for patients across the Oxfordshire region www.ooso.org.uk

The Primary Care Society for Gastroenterology (PCSG) - the voice of primary care gastroenterology that is listened to by those making decisions which affect primary care www.pcsg.org.uk

More details are available on AAH website at www.ActionAgainstHeartburn.org.uk

At the time of preparing this book, the author, Chris Robinson, was chairman of Barrett's Wessex, a former trustee of BOC and a committee member of AAH.

Return to top of page.

Appendix 4

The Author's Experience

I must have been about 4 years old when my mother took me to the doctor because I was a "mouth breather" - my nose was constantly blocked. The doctor said I had childhood catarrh and would grow out of it.

It wasn't until 50 years later, I found out it was just one of the many symptoms of the reflux problems I have had to deal with all my life.

All through my life I had problems I now know to have been due to reflux.

I have always had catarrhal problems or rhinitis. I've been tested negative for all known allergens.

When I was six, I had my tonsils and adenoids removed as they thought it would help.

As a boy I had my ears syringed each week - and carry the scars to this day.

I always had a very poor sense of smell and used to get sinusitis and headaches.

I've had my sinuses flushed on a few occasions.

My father ate Rennie like sweets and when I started getting raging heartburn (like a blowtorch down my throat) I did likewise. He died when I was a teenager. It was a heart attack but he probably thought it was indigestion again.

As an adult, I was chastised by my dentist when I had tooth decay accusing me of eating too many sweets.

I have known reflux so bad I have had to sit up for a couple of hours night after night between 2:00 and 4:00am drinking far too much Gaviscon to try and quench the fire.

I have experienced coughing fits, sometimes two or three times a day, where I black out and have had to sit up for a couple of hours night after night between 2:00 and 4:00am coughing and drinking far too much cough suppressant.

More recently I have experienced Gastric dumping Syndrome that may have been the cause of me losing consciousness frighteningly on three occasions.

I have been sent to ENT a few times when I have complained about chronic cough, hoarseness etc. Each time they started by testing my hearing and, when finding it a little deficient (particularly my right ear) have said it may be due to the scarring from all the syringing as a boy. And I have had tinnitus for years.

I was given an asthma inhaler ineffectively.

Suffering from dry eyes, I had a blood test for Sjögren's syndrome but told I was unlikely to have it as I'm a man.

I have experienced achalasia and lying on the ground thumping my chest trying desperately to get the piece of chicken I had just swallowed to move.

I've experienced kidney stones, cholecystitis and pancreatitis. I've had a Nissen fundoplication, cholecystectomy and Collis-Nissen revision surgery.

I spent years on 80 mg omeparzole (and used other PPIs and H2 blockers). I've experienced induced hypochlorhydria: I've been anaemic, unable to walk 50 yards, and may have been hypocalcaemic (fracturing my ankle in a simple fall from my bike).

I have had Barrett's at least 21 years and probably a lot longer.

Following the painful passing of a kidney stone on holiday, the doctor who treated me told me to see my own doctor when I got home. He wanted to know what had caused the stone and on questioning realised it was the excess calcium from all the Rennies. He sent me for a scope. The surgeon brought the screen round so I could see as he pointed out my oesophagitis (which is why I had been taking Rennie), my hiatus hernia that had caused my reflux and the bit that "resembled the intestines" and could possibly lead to cancer. He offered an open operation which sounded horrific and which I declined and started on the recently introduced PPI drugs instead.

It was some years later, with the PPIs becoming less effective and my cough becoming worse that I started researching in the library. When I saw the photos of Barrett's Oesophagus, resembling the intestines and that it could possibly lead to cancer, I recognised it as what I had seen on the screen in that first scope. And I didn't stop researching. And the internet has made that much easier.

I hadn't originally gone to my doctor with my heartburn as I had thought it was normal.

I want to ensure no-one else ignores the symptoms. My Barrett's may never have been discovered. I don't expect my Barrett's will progress but if it did, when would I have found out? When my symptoms were so severe I was forced to, only to then have been diagnosed with cancer too late for it to be treated?

Barrett's Oesophagus is recognisable as a possible precursor to cancer.

Oesophageal cancer is the fifth greatest cancer killer in UK which has the highest rate in the world of this killer that claims the life of one person an hour in Britain on average.

There could be one million with Barrett's in UK but fewer than 10% know it. If those with it can be identified, we may be able to reduce the numbers dying through ignorance.

Chris

MYTHS & MISCONCEPTIONS ← → REFERENCES