HOW TO OBTAIN RELEVANT AND AUTHORITIVE INFORMATION ABOUT YOUR SPECIFIC CANCER, TAILORED TO YOUR INDIVIDUAL REQUIREMENTS

[OPA_Pilmann]

The following outlines how the NHS Information Prescription Service operates. It is being used by professionals within the NHS to “prescribe” the relevant information patients need to understand and deal with their condition. However it is also possible for any individual to access the website containing the information and browse / research / obtain any of the information contained within it. Links are provided to partner sites to ensure the database is comprehensive, and accesses medical and non- medical information.

As the service is new, the NHS is anxious to encourage patients / carers to use the system, but it is also keen for ex-patients and others interested to explore what is available and feedback comments and suggestions for improvements. This can be done through the contact link on the website or for those living in Essex via [e-mail].

For anyone reading this who is involved in User or Support groups (or anything similar) it would be appreciated if you could bring it to your members attention so that they can take up the opportunity to obtain tailored information; and to make sure the initiative gets widest possible circulation.

The Information Prescription Service - IPS

IPS is a computer based system that is available to both NHS professionals and to patients where they can access the wealth of information available and “prescribe” on an individual basis, tailored information that they want to print out /read. Although it is planned that the concept of computer based access to tailored prescriptions will eventually be used throughout the country, it appears that IPS will have to run in parallel with existing systems for some time to come.

Anyone, patients and carers can access the IPS and tailor a prescription of information to their specific needs by going to nhs.uk/ips and following the instructions. It is a comprehensive and easy to use system and further work is on-going to improve the system by making it more user friendly, providing instant multilingual translation and increasing its content to encompass early and late (survivorship) information.

Prescriptions can be generated without registering, but by registering you can save and return to modify your prescription at any time in the future and add your own notes to it. Once in the site, selections will allow you to “drill down” to specific information, which may come from a variety of different (but authoritative) sites. The information from the prescription can then be read on screen, printed out or sent securely by e-mail to any email address provided.

This blog is an adaption of a more detailed description. Anyone wanting further information should contact me. However I recommend you have a go and see what you think of it.

[chrisrob]

The idea sounds good. I'm assuming it's still in it's infancy and will expand?

Barrett's Oesophagus isn't listed, for example.

How does a charity become a "partner"? Currently under Oesophageal Cancer, information links are provided by Cancer Reasearch UK, Macmillan and CORE; no mention of OPA.

[yorkshirerose]

I have just read the information on the nhs.uk/ips site and once again find the reason given for oesophageal cancer being alcohol and smoking. I find this quite offensive as I do not smoke and I drank red wine moderately, no more than two bottles a week if that. But once again the assumption that we are all alcoholic smokers is being given for this awful disease.

Sorry if I have offened anyone but I had to add my opinion

[Hidden in reply to yorkshirerose]

Well they certainly are not the only reason although statistics show that it is more common in smokers and drinkers.Another reason is acid reflux which I was given the cause of mine.Had it for over 20 years with GPs givin me indigestion remedies.No tests etc till too late !! Anyway dont take it to heart as its just generalising ! I agree with the comment of barrack room lawyer !!

[russo in reply to yorkshirerose]

Yes, we tend to be labelled...I have never smoked nor drunk in my life,yet contracted oesophageal cancer...

While on the topic of smoking, it riles me when attending hospital appointments to have to walk the gauntlet of hospital staff standing at the hospital entrance, smoking...

Kind regards.

[yorkshirerose in reply to russo]

Hi Russo, I know exactly what you mean about the smokers by the hospital entrance. One I see regularly by my hospital is an amputee in a wheelchair with a drip stand attached.

Makes you wonder lolol

[Free_Wheels]

I've played with it for a few hours now - The phrase, Barrack room Lawyer springs to mind. Needs a lot more work yet.

[Charlie36]

I agree with Yorkshirerose, I think we have enough to cope with without the implication we are all whiskey swilling heavy smokers. In America the manufacturers of the biophosphate drugs given to people with bone thinning problems are being investigated and sued as they are seriously implicated in the increase of OC in "non typical(:( " patients. Anyone with an immune problem is also more at risk, I have ra. my risk is 25% higher to develop any cancer for instance. Cancer can hit anyone and some people are more disposed to get cancer (or heart problems etc) than others. I wrote the section below on an earlier blog.

"Am I alone incidentally at disliking the emphasis and prominence of reports of the "hard drinking and smoking" lifestyle elements in Mr.Hitchens life? The implications that OC is a "well what did you expect, living like that" cancer offends me. Whilst not living like a nun for the last 40 years I stopped smoking 25 years ago, almost veggie, never touched shorts and only a social drinker. I am sure many others of us are moderate of lifestyle too. A similar attitude also occurrs with lung cancer I feel. While hard drinking and smoking will never contribute to health, neither will eating processed food, drinking fizzy drinks and being a couch potato! Many people also have compromised immune conditions that leave them much more vulnerable to cancers generally.The controversy about biophosphates, long term reflux etc. is also hardly every mentioned."

You can have two people living the same lifestyle and one will get a cancer and the other wont. The picture is not black and white! Yes, it is generalising and also hurtfull too! I lost my husband to cancer, in all, 4 types, 2 primarys and 2 secondaries. He was a hard working Teacher with a healthy lifestyle. Cancer is no respecter of anyone.

Charlie

[Hidden]

You are quite right to feel aggrieved about the smoking / alcohol link! There are good numbers of people who certainly do not fit this category. And some general blanket statements can be misleading and counter-productive, even without the hurtful implication that some people have 'brought it upon themselves' because of their lifestyle.

There are some connections though. 30% of oesophageal cancer in the UK is squamous cell carcinoma - the old stereotype was of the heavy smoking brewery delivery driver, or the brandy at breakfast French businessman. I think alcohol and smoking is associated with this type of cancer to some extent, but there are more women than men with this type, and plenty of examples of clean living young-ish women with healthy lifestyles who get diagnosed with it.

The other 70% is adenocarcinoma where acid reflux and previous Barrett's oesophagus (usually undiagnosed) is the big factor. It is virtually a different disease. There is not a statistical association with alcohol, but the connection all seems to be to do with the effectiveness of the valve between the stomach and the oesophagus - so it is stomach acid/reflux splashing up, especially at night, that starts to change the cells. Smoking sometimes relaxes this valve so it might have an indirect effect. So might a hiatus hernia.

Perhaps one day we will find the 'magic' factor that explains it all but we are quite a long way off from that at the moment.