Oesophageal Cancer Westminster Campaign

David Heyes one of the OPA's trustees, was the host of a rally and one of the MPs who signed the campaign pledge on oesophageal cancer last night (13 October 2014) at a well attended rally and reception at Westminster.

The pledge draws attention to the fact that more than 70% of the oesophageal cancer cases in the UK are associated with Barrett's Oesophagus, that awareness of this amongst the public and health professionals is low, and that access to early diagnosis and treatment for Barrett's Oesophagus reduces the likelihood of developing cancer which saves lives and is cost-effective for the NHS. The pledge ends 'We believe that NHS England should support guidance and referral of patients with persistent heartburn and those at risk of Barrett's Oesophagus. In addition we fully support the Be Clear on Cancer campaign and its extension across the NHS to the rest of England"

So thank you to all those who contacted their MPs and attended Parliament yesterday. We believe it was a resounding success. The reception was hosted by Mike Thornton, MP for Eastleigh. As well as surgeon Tim Underwood, the speakers included Professor Mike Griffin from Newcastle, Andrew Gwynne MP, shadow health minister, Norman Lamb and Jane Ellison, both ministers in the Health Department, thereby demonstrating cross party support. One patient story included a Barrett's Oesophagus patient who had not attended check ups for some years only to find that he had developed high grade dysplasia. This would have meant an oesophagectomy, but he was given successful radio frequency ablation (RFA) treatment.

So now the campaign needs to continue this momentum.

Scotland, Wales and Northern Ireland all have their own sections of the NHS and ministers.

The importance of diagnosing , monitoring and treating Barrett's Oesophagus is an important strategy for reducing deaths from oesophageal cancer through early diagnosis. Provision of RFA is patchy at the moment (there was one patient there who had been successfully treated by RFA only after insisting on a referral to another hospital after an oesophagectomy was planned for him). The Be Clear on Cancer campaign will be run across England from 26 January until the end of February 2015, so we need to do all we can to support that.

We are most grateful to David Heyes and Mike Thornton for their part in making the day a success.

[sallym]

Thank you for that summary Alan, I'm sure there will be a lot of interest in this campaign. It was a very interesting insight into future developments in treatment. A brilliant day.

Glad the seat on the train did not let me down!!! Sally

[haward]

Well done all involved. This dreadful disease needs a higher profile and early diagnosis would save hundreds of lives.

[twohorserider]

An excellent day, lets hope that the promises are fulfilled. As a patient who has just had treatment after my Barrett's became cancerous I know how important this campaign will be.

[Spikey]

Unfortunately, I was unable to attend the Westminster event, much as I would have liked to. However, I wrote to my MP (Peter Lilley) asking for his support for the campaign and received a very short, unsupportive response. Clearly, there is still much to be done to raise the profile of this disease.

[DaddyPig]

I received a letter from my local MP (Yvette Cooper) yesterday, in which she included a reply, to questions put on my behalf, from Jeremy Hunt (Secretary of State for Health).

Unfortunately it appeared to be a fairly standard reply, highlighting awareness campaigns for a number of cancers, including oesophago-gastric, in 2012, and a local pilot scheme regarding oesophageal cancer in the north-east between 10th February and 9th March this year.

Apparently there is to be a national campaign, Be Clear on Cancer, between 26th January to the end of February. The letter also asked me to go onto cancerresearchuk.org, typing oesophago-gastric cancer campaign into the search box, then clicking on 'Be clear on cancer campaign,' then selecting the relevant campaign.

I've asked that Yvette reply to the Secretary of State by saying that although the above would most likely be helpful, I don't believe it provides the amount of awareness that oesophageal, and other cancers, requires. Mr Hunt's letter also states that the campaigns need to be balanced and that they do not want to cause anxiety. My personal response to that was that I would have been happy for a little anxiety if it caused me to seek medical attention that might catch the illness earlier.

I've proposed to Yvette that if the NHS wish to create a viable strategy for raising awareness, the best solution would be to engage the thoughts and experience of those who have gone through the illness. I have suggested that a good start to this would be to contact the OPA.

Best wishes

Paul

[Hidden]

Thank you Paul - Every reply helps! The Be Clear on Cancer campaign going national on 26 January 2015 is a big step forward, but, as you say, there is a lot more to be done. There are various strands to this - one being the extent to which people can be diagnosed with Barrett's Oesophagus early and then treated so that either they are prevented from progressing to adenocarcinoma, or caught in time for curative surgery to take place. This is not rocket science research that is required; it can be done on the basis of what the doctors can do already. It is very patchy as to whether all Clinical Commissioning Groups have bought in to having radio frequency ablation available to patients. And then there is squamous cell carcinoma and all the improvements that could be made for digestion issues after surgery!

[Mikey2711]

Hello Alan

I have just received an email from "Samantha Fu" who says she is a cancer sufferer, and would like to donate some funds to me in order To help me achieve "charitable goals", asking me to contact her lawyer via a supplied email address. A short investigation suggested this was a "scam", and advised against answering and/or clicking on any link. I suspect my details were gained through the APA, I passed my email to a couple of people who were about to undergo oesphagectomy and asked for some general advice (my own oesphagectomy was last January)

I strongly advise everyone to think carefully before answering unsolicited emails of a similar nature

Please feel free to circulate as you feel necessary

kind Regards

Mike

[Hidden]

I am glad you checked, Mike. According to google, this is a so-called "419" scam, a type of fraud dominated by criminals from Nigeria and other countries in Africa. Victims of the scam are promised a large amount of money, such as a lottery prize, inheritance, money sitting in some bank account, etc.

I think you have merely been hit by a variation of what is an all too common scam, and the chances of it having originated from emails to the OPA are very remote. It is a bit like the emails we all receive about security arrangements for banks where we do not hold an account, but in this case the word 'charity' triggered the thought that it might have a connection with emails you have sent.

This is a sad example of the world we live in, and I pass on the standard advice not to respond to anything that sounds too good to be true, and certainly never to forward any details of your bank account unless you know that the recipient is genuine.

These things have often done the rounds many times before, and a google search can sometimes be illuminating as long as you do not attempt to contact them direct.

I hope this helps, and it is certainly worthwhile as a reminder about the need to be careful.

[david001]

A succesful day with the new advertising campaign on OC announced by the Minister. Well done all involved