What happens to the results of the po... - Oesophageal & Gas...

Oesophageal & Gastric Cancer

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What happens to the results of the polls please?

Charlie36 profile image
5 Replies

I find it sad to note, but no suprise given my own experience, that 28% of people who answered the poll on aftercare did not receive the aftercare/monitoring that they expected/need. Can the OPA help in anyway with passing on these figures to someone, some organisation (NICE???) who might actually care about this situation at all? I realise that the numbers involved in the poll are small but if they reflect a valid picture overall, then it means over 1 in 4 people are left feeling very vulnerable and without the support and monitoring needed to help give them the best chance of a full recovery. I think the polls are such a good idea but if the information could be channelled into an improvement in dealing with OC long term then they would be a really usefull tool. This may happen to the figures already, I don't know???

Charlie,

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Charlie36 profile image
Charlie36
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5 Replies

Dear Charlie

I wonder whether this poll reflects the experience of other patients that have treatment for one thing - but the way in which the system links them up with other hospital departments sometimes leaves a lot to be desired?

David Kirby, our OPA chairman, is involved with the Quality Care Commission, and there are a number of our members who sit as patient reps on various committees, so having the means to conduct these polls does give the potential for an interesting steer to their discussions. If they can produce the result of a poll like these (and we get results quite quickly), it is more effective than simply giving a personal opinion.

So contributing to the polls does indeed help the cause!

Thanks

Alan

Free_Wheels profile image
Free_Wheels

I have never asked for any advise or help since my operation. I've never had a reason to. Given the way the polls are set up (Question and answers) my answers would put me in that 28% of people who answered the poll did not receive the after-care/monitoring. I was eating properly when I was discharged and continued at home and the Dr's could see I was putting on weight. Because of the way the answers for the polls are given I have little chance in giving a truthful answer.

Charlie36 profile image
Charlie36

My main concern is that with all the other cancers I have had personal experiences with via. husband and sister, there seemed to be guidlines that relate to followup. ie. 3 monthly scans, blood tests etc. whatever the guidlines are. (Breast, bowel, lung, liver,). With OC I have been told there arer NO NICE guidlines so followup is up to the individual hospital/Consultant. So some people are offerred regular checkups and some are only seen if they initiate an appointment because they are showing symptoms that are worrying them. It all depends on the hospital and Consultant that works there. Post coding????NHS running out of cash??? Poor links as Alan suggests? I don't know hence this thread. As for the questions and answers in the poll, I guess Alan has done his best within the constraints of the system. I initiated the poll and Alan set it up. I am not a techie at all. My concern is the poor stats on this cancer, the "Cinderella status" compared to other cancers and I cannot see how things can improve unless windmills are tilted both regarding initial diagnosis and followup monitoring. I was sent a poster when I was diagnosed and joined OC which my local GP practice put up for a month ( nearly 2 years ago). It was taken down and never replaced. Everyone knows about checking for lumps in their breasts etc. blood in bowel movements, persistent cough etc. how many know about the early symptoms of OC? I am really glad to hear that the poll results are of use and being taken into relevant discussions and being used to back up and trigger further dialogue. As far as I am concerned the more windmills we can tilt then hopefully some long term improvement in the stats might be possible.

Best regards.

Charlie

Free_Wheels profile image
Free_Wheels

I'm happy with seeing my consultant every 6 months and trusting his judgement as to whether I need any tests, bloods or scans. I do know that when I've expressed a concern he has acted immediately, I can't ask for more than that.

I whole heartedly agree with the awareness campaign. I just think that manipulating the Poll answers is the right way of doing things.

Poor links, I was taken aback when I went to a Nottingham hospital recently. They did not have access to my notes in a Derby Hospital 14 miles away.

This is just another update. We are having a debate with the Department of Health about their awareness campaign and whether there should be an age of 55+ specified. The results of the new poll re age on diagnosis, and the comments, have been used, to very good effect I think, in out efforts to try to get them to drop the age specification.

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