Report of Harlow meeting 24 February 2020
The meeting saw a committed and active group from all participants, The level of engagement from all was encouraging, especially, in a group that is so newly formed. What is encouraging, is that we know that going forward we will all be able to benefit to both patients and staff in equal measures if we can sustain the level of enthusiasm and commitment.
Report of Chelmsford meeting 13 February 2019
The Meeting went ahead as planned.
Colds and flu seemed once again mar attendance numbers. But those that did attend found the meeting lively and thought provoking.
It would appear that the consensus of reflux and Barrett's suffers do not get adequate support in managing their condition. GPs through lack of time, and in depth knowledge seem to be the prime culprits in the primary care situation.
The primary care situation is exacerbated in trying to get appointments to be referred to consultants. Mid Essex. GPs are currently triaging through an external source any referrals to consultants, and knocking back any that they deem to be not urgent. Bearing in mind that chronic reflux in their triaging consultations seem to be low in priority and therefore do not warrant referrals. It is only if swallowing difficulties are mentioned along with the reflux does anything seem to materialise. Again, this situation leaves people again unsupported and more likely to go their own way and top up on Gaviscon and similar for relief.
On the subject of Gaviscon, this is now not being prescribed for chronic reflux suffers on prescription. Gaviscon Advance has the highest content of sodium alginate (the floating barrier constituent of the medicine) which actually helps stop reflux. Peptac the now is the available prescription for reflux contains much less sodium alginate, which in turn lessens the floating barrier effect. Again, a lessening of perceived level of support which was once available. Gaviscon Advance if needed has to be purchased by the sufferer privately.
Referrals for endoscopy are again very much hit and miss affairs throughout the region and the amount of information disseminated post endoscopy ranges from abysmal to absolutely top class. Very much depends on the unit, and the practitioners involved on the day so it would appear that there is no standard benchmark criteria in dealing with patients who are diagnosed with Barrett's.
Currently, Broomfield hold stocks on the newly diagnosed Barrett's leaflets, and I am told that they are given out rigorously.
Once diagnosed surveillance recalls were patchy ranging from 6 months, 1 yr, 2yr and 3yr recalls and even never. Again, once diagnosed with Barrett's and surveillance carried out, there is a tendency for this surveillance to be tipped off the top shelf for those suffers who are deemed very low risk. ie, Female, white ethnicity, not overweight, and small segment Barrett's. This dismissal of surveillance, is very distressing to those suffers who have been removed from the list. This once again burdens the sufferer with a severe feeling lack of support. When this happens It appears that no dialogue is given to the patient. It is merely a clinical and cost saving exercise delivered in a very unhelpful letter from the consultant or department.
Every body agreed that they were aware that the NHS was under severe difficulties and could sympathise with the plight of those who have to work under such enormous pressures.
But negotiating the Scylla and Charybdis of getting adequate support without feeling that marginalised, forgotten or ignored or worse, being labelled "demanding", was the theme of the evening.
The group all contributed their own personal experiences and offered up ways around the above problems were openly shared and evaluated.
Recognition by British Lung Foundation.
The British Lung Foundation is the only UK charity looking after the nation's lungs.
Recognising aspiration of reflux can cause lung damage, BLF will be providing a link to our group for anyone with reflux problems.
If you have breathing problems, that may or may not be due to reflux, visit BLF website here or see your GP.
Essex hospitals agree to hand out our leaflets.
Newly diagnosed with Barrett’s Oesophagus?
Most people haven’t heard of Barrett’s before they’re diagnosed but it’s nothing to be frightened of.
Your stomach is lined with cells to protect against the strong acid it contains but your oesophagus isn’t. You will have refluxed some of that acid into your oesophagus (which you may have felt as heartburn) and your body has responded to protect you by placing a similar lining there. It is a permanent addition to help protect you.
Unfortunately there is a very slight chance it could mutate towards cancer. Although it most probably won’t happen, you may be required to take special acid suppressant medication which may reduce the risk of that happening and undergo surveillance endoscopy every few years to check no such changes have started. If changes are ever seen, you will be offered treatment to minimise the risk of cancer developing.
For more information, visit www.Barretts.org.uk or contact you local patient support group,
Barrett’s Essex: www.BarrettsEssex.org.uk
Email: BarrettsEssex@gmail.com Phone: 07974 188480
Update on leaflets. The text had been approved by the Ethics committee but following an unwelcome intervention by another group, leaflets are no longer distributed by the endoscopy unit at Broomfield Hospital but by the MacMillan unit. Meanwhile it has been update to include the most commonly asked questions.
The new version may be downloaded here.
At a drop-in discussion evening on 29th November 2017, we looked at the pros and cons of PPI medication versus anti-reflux surgery.
Sue has recently had the surgery.
Upper GI surgeons, Priyantha Siriwadana and Cheuk Bong Tang from Broomfield hospital talked about Barrett's and it's treatment and Chris Robinson (chairman of Barrett's Wessex and author of Down With Acid) talked about the charity and role of support groups. The meeting concluded with a question and answer session.
Public meeting in Chelmsford in September 2017 - feedback:
"Really Informative." "I learned so much." "Good to discuss issues."
From The Moulsham Times September 2017
Getting the message out there
Basildon hospital has set up an information stand and nurses have been speaking to patients, visitors and staff at the hospital to raise awareness.
(Picture thanks to Braintree and Witham Times)