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?
Hi Polly,
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/what-is-pals-patient-advice-and-liaison-service/. 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.
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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 .
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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.
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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.
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Sarah-53 and gogs- Appears to me that the NHS never learns. The “users” have promises of-“We’ll learn lessons etc. etc.!” I just despair of the NHS! Various scandals re the NHS in the media atm-very disturbing. gogs-how appalling that you had to threaten to expose the NHS’s lax attitude in correctly diagnosing your son by threatening to write to every newspaper in the country!! I’m so sorry to hear that lost your son-quite appalling!. Sarah-53-and yet on various sites Bowel Cancer UK etc. in their “young persons diagnosed with Ca”. some young patients still aren’t being taken seriously by the medical profession. Girls are fobbed off with-“of it’s your periods”! Young men-" IBS, constipation. Sadly the only way to get corporate NHS to respond is to threaten to expose bad practice. The spur to me atm is that if fighting for my son and getting answers and justice for all of our children, and to make the NHS take young people’s concerns seriously is to speak out! If it wasn’t for that mindset I’d just become an emotional wreck.
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Thank you PollyM
My grief for the loss of my husband last year has unfortunately resurrected the memories of my son’s death twenty years ago and the appalling treatment he received in the first ten months.
I am now in a state of despair remembering the care of care he received through a misdiagnoses and my inability to move that useless doctor who, being so full of his own rightness wouldn’t budge until I finally threatened him. He never got back to me to say he was sorry, too worried about his own career. I just hope to God he was made to experience through his life the pain and suffering he caused my son and how I as is mother felt totally useless at protecting him.
I hope you get to say or do something to remind them of what they did, even a face to face rant would be better than nothing. I did nothing ( too devastated at the time, but I have since regretted it)
My thoughts are with you and I hope you gain strength to get through this horror .
Gogs xx
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Dear Gogs, I do hope that you are receiving support through counselling, and or groups such as Cruse . I’ve confided in one particular friend-she’s been very supportive. ( she suffered a similar situation to you and me 
).Others can’t deal with the situation. So try to keep things “light” with them. I’m getting on with getting answers and justice for my son. Now of course there’s the threat of exposing bad practice in the NHS as a whole in the media! What with the contaminated blood scandal, the rogue breast cancer surgeon. And the rogue GP who was prescribing opiates to patients in her “care”, who didn’t need them !The NHS is being exposed for what it truly is- in a fair few areas-useless!! You did advocate for your son by threatening to expose his situation in the press at the time. Write about what happened to your son! Don’t dwell, YOU didn’t fail him! Of course losing both your son and husband has impacted on you! Look after you! Best wishes.
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So so sad your in my thoughts and prayers take care of yourself as much as possible Adele x
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Thank you both PollyM and Ade. I’m tortured at the moment, I keep seeing the day I went to visit , he was the only one left in the dining are, face down in cold, congealed
food on his plate, not touched. No one looking after him,no one even looked in.
Diagnosing him with depression meant that in psychiatric hospitals patients were expected to look after themselves, including making their beds. He slept on a rubber mattress, no bedding, all his clothes were taken by either other patients or staff and he walked around in a pair of pyjama bottoms, size extra large, he was five and half stone, he weighed 12 stone when he went in - I couldn’t stop any of it.
Ten months of that care before the threat, after the correct diagnoses he was given 12 months. I hadn’t realised how much rage I have carried around for all these years.
God bless you both, I hope you get some justice for your son, these people shouldn’t be allowed to get away Scot free, they should he held accountable.
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I’m so so so sorry from the bottom of my broken empty heart that is so so extremely cruel and heartless has me in tears hiw unfair that is gut wrenching I am so sorry your beautiful boy and family have had to go and continue to live this living hell I hope you get some justice it won’t change like me and alot if othere our loved ones should be sat here now but some answers at least please let me know how you get on in my thoughts and prayers take care of yourself as much as possible Adele x
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I totally agree with Ade. To Gogs have you thought about writing an account of your son’s treatment? Even the act of recording everything he, and his family endured will help you! People who have been affected by the contaminated blood scandal (the worst scandal to ever affect the NHS apparently). Have been interviewed and given accounts of how NHS negligence in administrating contaminated blood products to haemophiliacs. Have you contacted your MP?
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I totally agree with Polly Gogs you must take this further message anytime im appauled and saddened to hear of such brutality take care speak soon Adele x
Our son was ill for 18 months with chronic pain and was fobbed off with pain killers and told to have physio which he did bless him. He was refused an mri by his GP but had a blood test which he was told was normal. Eventually he paid for an mri himself because he couldn’t stand the pain and he had colorectal cancer. He was rushed into hospital for blood transfusions as he was so anaemic (normal blood test) his oncologist said blood results from 18 months before showed signs of cancer. He was diagnosed on 15th October 2018 and died after 10 weeks of torture on 29th December. The cancer had spread through his body and brain he had 2 seizures.Any chance he may have had to fight the evil disease was taken from him by his GP. When I contacted the hospital about his awful ‘care’ they couldn’t even control his pain I was told it was nothing to do with us as his next of kin was his wife who chose not to complain. Parents have no rights once our child marries. Marc was 42 and we are broken without him my heart goes out to you all x
Our son was ill for 18 months with chronic pain and was fobbed off with pain killers and told to have physio which he did bless him. He was refused an mri by his GP but had a blood test which he was told was normal. Eventually he paid for an mri himself because he couldn’t stand the pain and he had colorectal cancer. He was rushed into hospital for blood transfusions as he was so anaemic (normal blood test) his oncologist said blood results from 18 months before showed signs of cancer. He was diagnosed on 15th October 2018 and died after 10 weeks of torture on 29th December. The cancer had spread through his body and brain he had 2 seizures.Any chance he may have had to fight the evil disease was taken from him by his GP. When I contacted the hospital about his awful ‘care’ they couldn’t even control his pain I was told it was nothing to do with us as his next of kin was his wife who chose not to complain. Parents have no rights once our child marries. Marc was 42 and we are broken without him my heart goes out to you all x