Lung Cancer

A support group for anyone affected by lung cancer to come together, share experiences, and ask questions.

I'm fuming!!!!

Dorset1
Posted by

My GP told me to write down in as much detail as possible, rather than just fill in the pals form. I don't believe it would do any good as they seem to a law unto them self's

 All that said I am finding it really hard to take action on some one who tried to save my life, yes they messed up, put us through hell and gave wrong test results (they said it was all clear when in fact it had spread and no all they can offer me is palliative care) I have to ask if the outcome would be the same. Keep up the fight and keep well.x

TamsTerminal
Posted by

Hi Dinah May

I had similar problem getting an initial X ray from my doctor - she made me take a course of antibiotics in case my cough was the result of a chest infection and I had to wait three weeks for the X ray.   When my Xray showed a problem  I was lucky to be dealt with quite quickly for a scan, pet scan and MRI followed by an operation to remove part of my left lung.

SCLC is much more aggressive lung cancer than mine was so I appreciate that time was of the essence in your mum's case but I do agree with the doctor that CT scans are themselves a risk to our health so should not be used routinely unless indicated by other tests and X-rays.  My last CT scan for brain tumours made me so ill I may not be able to undergo further treatment in the future.

It is possible for you to get a CT scan against the doctor's advice -  but maybe at your own expense if it is against the doctor's advice

iI the scan shows up any abnormalities which prove him wrong and your long term health is adversely affected by his failure you could sue him or the hospital.

Tams

Jimbo81
Posted by

Hi Tam,

I do not believe that you can get a scan in the UK without getting a referral from a registered doctor. That is part of my issue, it seems doctors are more willing to write a referral when you are paying for a consultation and you are paying for the CT.

This is legislation, so it would be surprising if some people are getting scanned without any form of GP referral.

Jimbo

TamsTerminal
Posted by

Hi Jimbo

I'm sure you are right.  I've never actually tried this and would be more concerned to try and avoid tests and treatments which have been pushed over the years.

I noted your interest in facts and figures.    New Scientist magazine this week has a fascinating article about Maurice Pappworth and his fight to stop doctors carrying out distressing and sometimes lethal treatments on unsuspecting patients in the name of research.  

Tams

Tams

Dorset1
Posted by

This site is meant to be to support each other.

TamsTerminal
Posted by

I imagine that doctors have to follow set protocols and procedures as determined by their regional health authority.

It is a postcode lottery so it all depends on where you live in the country.

Tams

pchad
Posted by

Dorse1   here here well said. Ive just read the posts that are soooo very negative i was shocked. O. K. everyone is entitled to say whatever they want. In a decent way but that thread was very depressing for r folk that wish to ==  as i ==  have a goal l of beating with the help of meds team this vile stuff and living a little longer.  pchad. 

Jimbo81
Posted by

Hi Pchad,

I personally have found this thread quite enlightening and has highlighted many things that I didn't know, and also prompted me to go and find a few things out. For instance, I was not aware that Xray misses so much, that follow up with CT is standard in many countries and that you could also push for a CT if you think it worthwhile. The information here will certainly help in this respect.

It has also informed me that people should maybe question their doctor a bit harder, again, the information here will be useful for me. I generally dismiss a lot of information I read, but some of the sources identified can be verified and therefore I think reliable.

It is horses for courses, there is a lot of information that I don't want to know about, I tend to stop reading the post or thread when it contains material that I don't want to read.

I think we all have a common goal in living s long as we can with quality, and if we can put information, good or bad, that may help anyone out there trying to get diagnosed or going through treatment, then that can only be positive.

I am not sure if you find the whole thread as being negative, but I would not want anyone else to go through the same journey as I have had and I wish I had more knowledge when I first went to the GP.

Good luck with your treatment, there are many people who go on with quality life long after diagnosis.

Jimbo

DINAH MAY
Posted by

When I started this thread I knew that it woud be controversal, it certainly wasnt meant to offend and so I am sorry if you have found this negative. The reason I wrote it was because for me it was a' light bulb' moment, yes there was some anger behind it but how could it not be. I dont want to sit back and think it was unfortunate that my mum was diagnosed with cancer and she died, I read posts on here that break my heart and I want to change things, I see a system that is broken and I want to help fix it. But where to start!

Dorset1
Posted by

Ho Dinah

I don't think you have anything to apologise for regarding you're thread. 99.9% of the responses have been informative and Ifound it quite reassuring to find out i wasn't the only one that things have gone wrong for. That may seem a strange thing to say but I thought I was the only person it has happened too. It would be absolutely fantastic if some one actually took notice to what is on this sight. Let's not hold are breath. Thanks ever so much for the thread. Trisha

TamsTerminal
Posted by

Just wanted to reassure you Dinah May.  The comments about negativity were aimed solely at me - overflow from another thread where posts were deleted by admin .Main problem with this site is that posts just continue in a straight line and don't allow for individual responses to specific comments.
I'm with you all the way about our broken system but I believe the whole cancer industry is very beneficial for those who have invested financially. 

[edited by admin]

Tams

Jimbo81
Posted by

Dinah, you have done nothing more that start a thread that has provoked a lot of reaction, got some views and opinions which has left some of us better informed. I agree with Tams that the comments were not aimed at you and I am happy to share the burden with Tams.

Tams, I did look up Maurice Pappworth, quite interesting but I hope things have changed from the 1960s. Thanks for adding on his details I genuinely got quite absorbed reading about him. I guess in 50 years from now, people will be amazed with what we put up with.

Just Jimbo

Dorset1
Posted by

Hi Dinah. I am not going to carry this stupidity on. The thread was brill I really looked forward to reading it but I must STRESS I have never had a post removed , 2 words yes but not a post. Thanks and bye.xxx

Jimbo81
Posted by

I am not sure who has upset who, but I hope it is all resolved. I wasn't going to post any more but then this news story came up which I thought was relevant

Overall, the bill for medical negligence claims in England has risen four-fold in the past decade, to £1.6 billion last year.

Claims are handled centrally by NHS Resolution, which has attributed the increase to ‘historical’ cases, rising life-expectancy and a recent change in the way payments are calculated.

However, patients’ charity Action Against Medical Accidents claimed basic errors are being repeated over a period of decades.

NJE7
Posted by

Hi Dinah,

So sorry about your Mum. I’m in a very similar situation with my own Mum. In that she was given the all clear from cancer, but then the nhs forgot to call her for radiotherapy that was needed and now she has terminal cancer.

It is so frustrating because the negligence bill/ problem is only increasing and the nhs are not learning from their mistakes. Although we have made an official complaint, it does not look like it will go much further than an apology and nothing will change. We really do need to fight for change because the nhs is capable of saving more lives. Especially as mine was let down by a forgotten phone call/ an IT error and many others by late diagnosis.


Take care,

Nic