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Are you over 70 years old and have been affected by cancer?

Moderator Renata

Cancer Research UK have commissioned the University of Birmingham to conduct a study to understand more about patients’ access to cancer treatments in those over 70.

The researchers have worked in partnership with patient representatives to design a survey, which asks about personal experiences of decision-making - e.g. how much you knew about how decisions were made about your care.

If you are over 70 years old and have been affected by cancer, we want to hear about your experiences. The survey should take no more than 15 minutes to complete, and your feedback will be invaluable in helping to shape our recommendations to key decision-makers to ensure older people with cancer are able to access the best possible treatment for them.

How to get involved

The survey will be available until 25th August and is available here. If you would like more information, email involvement@cancer.org.uk

Thank you for taking the time to help with this.

  • Offline in reply to davek

    I think you are quite right Dave. Sterereotypes of the older person pervades the entire establishment. I am not a vulnerable person, I don't need to be talked to in a higher pitched voice as teacher might address a small child, I don't need things explained to me in a simplefied way, or certain details of my illness held back from me. I don't need my bottom wiping. I don't need to be treated differently than anyone else. I am quite capable of making my own decisions but I happen to trust my oncologist (aged 66 ), and his knowledge about cancer and happily go along with his recommendations which are fully explained to me, as I trust the heating engineer who services our gas installation and any recommendations he makes.

    The final point you make is even more valid and that is the misconception that men are reluctant to talk to or visit their GP, and so presenting with more advanced cancer. The GP is the filter to stop hospitals being inundated and the guidlines are too stringent. I had 3 GPs visits before my concerns about cancer were acted on. By the time I went through the process a further 3 months before treatment the cancer had gone from a simple operation with a near 100% sucess rate to a stage 4 tumour that metastasised. The cost to me is enormous and to the NHS a bill that may have been £500 is now well in excess of £30,000. Yet the policy makers continue with their failed system then blame the patients (this time a stereotype of men) for the failure of that system. The data they use is from poorly designed questionnaires, like the one above, which make assumptions about people first, then frame the questions around those assumptions.

    Keep up the good work Dave. Kim 

     

  • Offline in reply to kimchoson
    Hi Kim I was just going of my experiences of over 75+ not using the internet. My Mum and her friends don't use the internet (my Dad tried several years ago but gave up) although one has been bought a tablet she does not use it much. I go to an exercise class for over 55's and I would say that the majority of them (all women) don't use the internet. I know you should never stereotype people and I suppose its down to our own experiences and I have just realised that two friend of mine now 70 both use the internet and have done for years. River
  • Offline in reply to river56

    Hi river

    I know that for lots of older people the digital age has passed them by and they find they have no need to get involved with it, and your observations of your own family and your excercise class would show that to be the case. However, when I'm out and about, I have been truly astonished to find just how many older people especially in the last few years have started to use this technology. I think the simplicity, with the introduction of touch screen tablets, has in part brought this about. It is often used as a way of keeping in touch with far flung friends and relatives.Hope that your are keeping well and your excercise class is a really good and fun way to do just that. Kim

     

  • Offline in reply to kimchoson

    Hi Kim,

    I was also affected by flawed NICE guidance. At the NCIN conference last year a study based on scenarios presented to GPs under controlled situations was discussed at the NCIN conference This showed that English GP's on average referred patients who presented with cancer symptoms after their third or fourth visit, compared with after their first or second in France or Germany. 

    The NICE guidance changed in late 2015, but I wonder how many of us could have had our cancer detected at Stage 1 or 2 if the original NICE guidance to GPs hadn't been heavily weighted towards avoiding a high percentage of negative diagnostic tests? 

    After the shock of my case, my own GP ignored NICE guidance immediately referred on the next patient aged under 60 with similar symptoms who wasn't obese, had never smoked, wasn't an alcoholic, hadn't had any unexplained weight loss and was otherwise physically fit.  He was referred for an endoscopy and CT scan via the cancer pathway. He too had cancer of the oesophagus but at Stage 2, rather than my Stage 4. Perhaps if he had been forced by NICE guidance to wait as long as I had (well over 18 months from first presentation at the GP until the endoscopy which uncovered a large Stage 4 cancer) he too might have reached Stage 4 before being correctly diagnosed.  

    I almost lost it with a nurse who patronisingly assumed that my late diagnosis was due to me not visiting the GP as I didn't want to bother him. I pointed out that the "him" in this case was a "her" and that I'd been presenting with the same symptoms to my GP for almost two years before I was put on a non-cancer care pathway ... which had further delayed my cancer diagnosis!  

    There IS undoubtedly an issue with patients not going to the GP when they have cancer symptoms, but this applies to both genders and all age groups. The older we get, the more likely we are to have cancer symptoms.

    Rant over :-)

    Cheers
    Dave 

     

     

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