Advice please: I was wondering if I... - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation

5,783 members3,467 posts

Advice please

Alemap13 profile image
11 Replies

I was wondering if I could ask some advice. I sadly lost my mum to lung cancer two weeks ago. She was only diagnosed 6 weeks previously but it had already spread to her lymph nodes, bones and liver at that time. The very short version is, she had been in hospital 4 or 5 times since last March and despite having tests & scan and being seen regularly by a respiratory consultant they missed the cancer and were treating her for institutional lung disease. My mum was incredibly brave & kind through it all but she couldn't shake the feeling she was owed an explanation. Unfortunately she deteriorated too quickly and this didn't seem important in her final weeks. The thing is I feel I need to get this closure for her now. I don't want anything but an explanation as to how it was missed and also so no one else has to go through something like this. What would be the best way to go about this? Should I try and contact the consultant directly or is there another route I should take. I am so sorry if this is not the right place to come but I don't really know who else to ask.

Many thanks.

Written by
Alemap13 profile image
Alemap13
To view profiles and participate in discussions please or .
11 Replies
frankiedarv profile image
frankiedarv

I am so sorry for your loss, im not sure how to get the answers you need, hopefully one of the admin team on here can advise you as they are very knowledgeable.

lots of love

Frances

Beeinaflower profile image
Beeinaflower

Sorry to hear about your Mum. Probably the best place to start would be the PALS (Patient Advice and Liaison Service). There should be one as part of the Trust who treated your Mum. They should be able to help or guide you in the right direction. I hope you find your answers.

Rachelhols profile image
Rachelhols

Hello, I am new on here but felt so sad when I read your msg for help. My husband who is only 51 and a non smoker has adenocarcinoma with brain Mets and it took his doctor 10 weeks to send him for an X-ray, so I understand you're upset. I don't know the best way to go about this but do you have copies of your mums medical notes and scans? You may have to pay for them and perhaps get a second opinion elsewhere as to how this got missed? Have you asked to have a meeting with her consultant also? PALS is a good idea as someone else mentioned. I have used them at Northampton General and found them

To be very helpful. I'm so very sorry that you have lost your mum to this frightening disease and I feel so sad for you. It's perfectly natural to want an explanation and you deserve that for her and for yourself. Best of luck xx

Deb1801 profile image
Deb1801

I would recommend PALS as your first port of call as they are responsible for handling complaints. I know this has already been suggested. I am really sorry for your loss. I hope you get the answers and closure you need.

Lots of love and thoughts xx

Olic profile image
Olic

Citizens advice also has information on their web site which is very helpful. Sorry to her about your Mum and I hope you get some answers.

NicF4 profile image
NicF4PartnerRoy Castle

Hi, I am so sorry to hear about your mother. I think the advice you have been given below is good advice and both PALS and Citizen Advice will advice and support you. It may not be an immediate process, but for closure it might be worth hanging in there. If you require copies of records there will probably be a cost. Unfortunately late diagnosis is all to common in Lung Cancer, something that we need to see change. It is mostly down to the nature of the disease, so awareness is key. I do hope you get the opportunity to answer some of those questions, and please to contact us via the helpline if you feel we can help further.

Nicky

Nanny1086 profile image
Nanny1086

Hi ,so sorry for your loss ,I think people have said it all ,I would try the PALS route first ,,,or just ring the hospital concerned ask to speak to the consultants secretary and take it from there,,,,God bless

hilde profile image
hilde

So sorry to hear your mom lost her battle. I agree with others on thus site, PALS are the best people to contact.

Best of luck, this won't help you with your grief but will certainly help it happening again to any more unfortunate patients.

I hope you have support from other family and friends through this awful time.

Good luck Hilde72

jonnyd01 profile image
jonnyd01

I can only echo what others are saying...and contact pals who will liase and poss set up a meeting with you and her care team/consultant etc.....i lost my wife of 45 to this awful disease after only a 10 week fight and pals set up a meeting for me...god bless, john.

Alemap13 profile image
Alemap13

Thank you all so much for your help. I will contact PALS. I'm so sorry to hear your stories. What I have been overwhelmed by in all of this is people's kindness to others. Whatever we see and read everyday, there is a great deal of good in people and I hold onto that. I wish you all well.

em16780 profile image
em16780

Wanted to share my experience, I'm here as my mum was diagnosed with lung cancer last may. But in march we lost her mum to liver cancer just 5 weeks after her diagnosis. Her symptoms were not taken seriously and she was in and out of hospital for.months. She was told it was constipation only two days prior to receiving the devastating news. Like you we felt things were missed but during those 5 weeks it seemed unimportant. When she had passed away all i wanted was some 'justice' for her so requested all her medical records from gp and went through them with him. I then contacted pals and said I wanted to complain about my nans treatment at hospital. I received an apology and acceptance that the staff had let my nan down. I could have gone to a solicitor but by this time my mum had been told she had lung cancer and I decided this fight needs me more. It wouldn't bring my nan back and that is all we wish for. Such a sad situation and my thoughts are with you xxxx

You may also like...

Any input/advice please on radiotherapy post immunotherapy?

that the cancer in my spine and lymph nodes has gone … and my 8.8mm tumour in my left lung has...

Any advice or help please

well to extend life especialy for lung cancer patients.Has anyone else heard of this? and how do i...

Need advice & recommendations please

leison on his liver and spots on his lungs. We have waited 12 weeks to see an Oncologist as the...

More advice please

if the cancer is left to its own devices is anyone's guess, by the time they look at the cancer...

Dose reduction, advice please?

that reduction will leave the door open for the cancer to return ( I also have brain mets that have...