How do people cope with misdiagnosis/ late diagnosis of cancer in a young person. I alternate between rage at the useless, rubbish NHS England and utter disbelief that my son who was a young Dr has died!! We didn't expect special treatment because he was a Dr. He returned home to Wales post his emergency surgery in 2014. His Oncologist, the ColoRectal Surgeon (who did a brilliant job tidying up his scar). Link Nurse, district Nurses our GP were all excellent. But trying to get answers out of NHS England is a herculean task. Has anyone else faced this dilemma?
My 32 year old son died in February 2019-misdiagnosed/ late diagnosed bowel cancer
I'm so sorry to hear that you've lost your son at such a young age, and about his misdiagnosis. It is understandable that you have a great deal of anger about this, and it sounds as though trying to get answers is an added struggle on top of your grief.
Have you been in touch with your local PALS (Patient Advice and Liaison Service): https://www.nhs.uk/common-health-questions/nhs-services-and-treatments/w.... They can help support with things like complaints and requests for information from the NHS.
I'm glad that you've found this Online Community and I hope it helps even a tiny bit to be able to share what you are feeling here. There are many other parents here who have lost a child and will understand some of what you are going through.
While you wait for more replies to your post, you may also wish to have a look at some of the other recent conversations in the Losing a Child section: https://support.sueryder.org/community/losing-child. Feel free to post a reply there if you see anyone you would like to talk more to.
Thank you! I didn't go the PALS route, in retrospect I should have done! I contacted the Complaints Dept, at the hospital where my son's misdiagnosis/ late diagnosis occurred. The lady dealing with my son's case (governance),has been very helpful. The Dr conducting the enquiry into my son's case has offered to meet husband and me. So I may go the PALS route before we meet with him. Thank you for the link.
Yes, it may still be worth getting in touch with them to see what help and support you can get with the ongoing complaint. I am glad to hear that you have a helpful person handling your case, and I hope that your meeting with the doctor brings you some answers.
Hi polly,I am really sorry to hear of your lose you must be devasted .My son passed away just over three years ago also being misdiagnosed,he had been ill for a while because of his age he kept getting the wrong diagnosis it went from ins,pneumonia ,hernia by the time he actually got his diagnosis it was terminal cancer he was 22 and survived until he was 23.Im still in a place of disbelieve.,this is the first post I have done as I felt I had to answer your post.
Thank you! After having a think about my son's situation, I've been advised to go the Community Health Council route. As we live in Newport, I've been referred to the CHC in Newport. So far, so good! Made it very clear that I don't have any issues with Welsh NHS- quite opposite!! Welsh NHS looked after my son post his emergency surgery (London) in 2014.
Thank you! I was very sorry to hear about your son! What is it about our "National Health Service" when a young person presents with symptoms which aren't age appropriate in some Dr's eyes? And the NHS was going to learn lessons from Stephen Sutton. Did you challenge your son's late/ misdiagnosis? Have you had counselling? I had counselling last Autumn before my son died, it puts the situation into perspective. My husband will be having counselling soon. We've been flooded with paperwork etc. Just feel like throwing it all in the bin!! Thank you very much for replying to my post. I hope that you have support from family and friends. Best wishes!!
Thank you.yes we went through pals and there were recommendations made .My son just wanted no other young person and family to endure what we all have and continue to do so daily.I went for counselling when my sons diagnosis was made to help me have the strength to support him .
Yes it puts things in prospective and in that room you can be as honest as you can be to help you get through the days.I really don’t know why a persons age should affect their diagnosis but it does and continues to do so.I wish you and your family all the best in these difficult days.
I'm so very sorry for your loss. the same thing happened to my son twenty years ago, when they finally got around to re-diagnosing him ( only after my threat that I would write to every newspaper in the country) he had only months to live.