My husband was diagnosed with T3 N3 M1b/c left lung adenocarcinoma in October 2 1 . He had chemo and immunotherapy as well as radiotherapy. In January 2 2 he started getting pain in his neck which he reported to the oncology team at the hospital and it was added to the ct scan in May 2 2. He was told there was nothing seen on the scan and despite still telling them he was in constant pain it wasn't scanned again until March 2 3. Three days later he received an urgent phone call from his oncologist asking him to phone an ambulance as he needed to be admitted to hospital. They told him whilst he was there that the May 2 2. Scan had been misread and that he had a mass at c2 and brain metastases. He then had his first mri which showed brain mets throughout his brain. Sadly he died from pneumonia in September and I was made aware the day after of the badly read scan. I have complained to the hospital and they don't think they've done anything wrong. Surely he should have had an mri of the brain after being diagnosed? Any advice gratefully received.
nhs complaint: My husband was diagnosed... - The Roy Castle Lu...
nhs complaint
Dear Sharkypuss
So very sorry to hear of the sad loss of your husband and under the current circumstances that you have explained. This must be extremely distressing and a very difficult time for you all.
A brain scan is not routinely done at time of initial diagnosis unless the person presents with neurological symptoms. You may wish to consider asking for an appointment with your husbands oncologist to discuss your concerns, and you could do this by asking the switchboard to put you through to the oncologist secretary.
This link details how to make a complaint in the NHS nhs.uk/contact-us/how-to-co...
You may wish to make contact with the Loss Foundation who specialise in supporting those who have lost loved ones to cancer: thelossfoundation.org/
I assume you spoke with PALS, the Patient advice and Liaisons services at the hospital, if not you could speak to them via the switchboard for an appointment.nhs.uk/nhs-services/hospita...
If you would like to chat about anything you can call the nurse helpline on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600, alternatively you can email us at lungcancerhelp@roycastle.org
Again our deepest condolences
The Roy Castle Lung Cancer Foundation
It seems odd that no routine mri is carried out with metastatic lung cancer given that it is known to spread to the brain and from what I've read a third of people with brain mets have no neurological symptoms. I haven't used the PALS department as i was afraid they would side with the hospital. I will soldier on and go to the ombudsman as I desperately want justice for my husband.
Hi Sharkypuss
I hear where you are coming from and truly hope you find some answers and peace. This experience must have impacted your grief immensely and you are welcome to contact ask the nurse for a chat on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600 alternatively you can email us at lungcancerhelp@roycastle.org.
Kindest regards
The Roy Castle Support Team
I'm so sorry to hear of the loss of your husband 😔 I was given a ct of my brain at diagnosis but now my oncologist said it should always be an mri as like you say it can metastasis to the brain. Absolutely tragic that the scan was misread and it definitely needs further investigation if not just to stop it happening again. Take care of yourself x
I’m so sorry on the loss of your husband, I know how devastating it is as I lost my husband 3 years ago.
He also had lung cancer & the hospital failed him on a number of occasions. I initially complained to PALS then when I received an unsatisfactory reply from the hospital I went through the ombudsman. It was a long, arduous process & I finally got their report a month ago.
I would advise you to go ahead with your complaint. Please contact me if you require any further advice.
Thank you for your reply, the report I received yesterday was very poor,it even got the oncologists gender wrong! I am going to respond to it and also take it to the ombudsman. Will the ombudsman only look at a specific event or will they look at his overall treatment?
The ombudsman will look into as many complaints as you have but will then decide which they actually approach the hospital/ oncologist with.
I had to go through the channels via PALS before the ombudsman took up my complaint. I created a file with dates, tests, results etc Good luck.
I'm sorry for your loss if I were you I'd grieve , I wouldn't go on such an arduous journey ,I'd celebrate the life of your husband .
Thank you for your reply. This is the last thing I can do for him after forty one years of marriage and I'm determined to have them acknowledge their devastating mistake. Until then, how can I trust the nhs?
My wife also had lung cancer stage 3 over a year ago. She had a MRI done of her chest and neck and it was clear. A month later she was acting strangely and I insisted she have a head scan done. Sadly she passed from brain cancer 11 days after her scan and before the results were done.
At no stage did they ever offer a head scan during or after her treatment.
I've slowly come to terms with her passing and complaining now about the lack of proper treatment will not bring her back.
I'm so sorry for your loss. I know nothing can bring him back but this is the last thing I can do for him, they let him down badly and I badly need them to acknowledge it. It's too late for an apology but if in future it stops someone else going through this then it is worth doing.
Dear Sharkypuss
I'm so sorry to read about your husband's and your experience. We all know what a nasty disease lung cancer is but we all should be able to expect the NHS to treat us competently and kindly.
For what my opinion is worth, I do think PALS is worth contacting, even if you ultimately contact the ombudsman. I think you will find they are very supportive of you.
Best wishes to you, Sarah x
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