I have been looking through previous posts for lung cancer and the treatment and diagnosis for lung cancer and a couple of people wrote about the appalling treatment their family member's had from their hospital. My hospital had my tumour on an Xray for over 2 year's but omitted to tell anybody despite the fact that I was in and out of hospital, losing weight and feeling so ill and scared. I don't know why but I was sent to a large bowel Consultant who blocked my referral for a year and made out that I was imagining feeling so ill because I had had a breakdown 14 years previously which I had long since recovered from.
Long story short, I ended up with pneumonia where my wonderful Thoracic Consultant found I had Adenocarcinoma in my upper right lobe and I had to go to a hospital 4 hours away to have a Lobectomy. I have been left with multiple health problems and a year on I still feel very ill a lot of the time. I complained to our hospital regarding my treatment by the large bowel Consultant's but was fobbed off but how you can leave a patient with cancer and no treatment for that long with no apology boggles my brain! You are told to go to the Ombudsman but they know perfectly well that most of us feel too ill to carry on fighting for an apology. I have no confidence in a lot of areas of our hospital but I am so lucky that I now have the most wonderful Thoracic Consultant. I just hope he doesn't leave as the hospital now has such a bad reputation that Staff are leaving and they are having a problem recruiting Consultant's etc. At the moment, I am lucky to be alive even though I still feel so ill. I did not have a cough before my operation but now I am coughing for 1 - 4 hours and then being very sick with a lot of fluid and I am so tired and in pain and when this happens I do get scared but am still waiting for a solution. I just want to feel better and don't know why I don't and yes I worry that the cancer has come back.
I wish everybody with cancer much love and I know how frightening it is to have cancer but there is a lot of support out there which I found from Maggie's and the MacMillan Nurses were wonderful although I had to find support myself and did not have a cancer team. Good luck and much love to all.
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Danni54
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Sorry to read of your poor experience. Mine was also missed - and misdiagnosed. Several months after my lobectomy I did take my case to the ombudsman as the responses from the local Trust to my many detailed letters prompted more questions than answers. The ombudsman asked me what I wanted - did I want compensation? I said ' no - I just didn't want anyone else to experience what I had'. That was 8+ years ago when I was Chair of the local community healthcare services and a non executive director of the Primary care trust responsible for the hospital Trust. I wanted 'lessons learnt' to mean that so was surprised at a recent event training GPs on cancer awareness to learn such incidents still happen. I'm saddened to read of your case and others nationally that resulted in a report this July by the Healthcare Safety Investigation Branch 'Failures in communication or follow up of unexpected radiological findings'. The HSIB is funded by the Department of Health & Social Care, sponsored by NHS England &
NHS Improvement, but operates independently. A number of recommendations have been made to the respective Royal Colleges to improve their processes and training. Hopefully now attention has been raised at this level, things may change - I live in hope.
Part of the problem is that each Trust looks after its own complaints - in other words, learning appears not to be shared with others so errors continue elsewhere without the scale of the issue being fully appreciated.
I do think we have to advocate for ourselves as often we do not look like what a clinician may expect 'lung cancer' patients to look like (whatever that is) often appearing fit and relatively well despite us knowing something is wrong.
Like you I trust my thoracic consultant implicitly. Glad you had Maggie's (there are none in the Midlands) and Macmillan nurses (I didn't have one ). Although we may be unaware of a team, there is usually a Multidisciplinary team conferring on the case although a lead clinician (surgeon, respiratory consultant or oncologist) will be the person the patient sees. We all fear the return of our cancer - that's natural - but this fear may recede with support and reassurance. I hope you experience better results than so far. good luck with your recovery.
Hello Janette. I am so pleased to hear from you and admire you for going to the Ombudsman. I put 2 complaints to our hospital, the first one was approximately 3 year's ago for various mistakes that were made before I got pneumonia and learned of the tumour and was appalled at the response which was full of inaccuracies and 2 of the Consultant's were liberal with the truth which I can prove. However, I am not a suing type of person and by then I was so ill and had lost a lot of weight and just did not have the energy to take my complaint further. Like you, I did not want anybody to go through what I have been through.
I cannot tell you how many error's were made e.g. letter's which were not sent, error's in appointment's so that I would go to an appointment, show the letter but I wasn't on the list and so many more. The Consultant then was arrogant, patronising, dismissive and did not listen. There were 2 like that.
I have always said that I would love to get all the Consultant's and Dr.s together with patient's who have gone through what we have gone through and try to change their attitude and stop them from treating us like stupid, neurotic women who don't know our own bodies and how many of us are going to die or be left with chronic illnesses before these attitudes change and what makes them think that any of us want to be ill and make up how we feel when friend's and family can just look at us to see how ill we are? Soapbox again but I never thought that I would be made to feel like this and be left dreading the day that I have to go back.....apart from seeing my Thoracic Consultant who could teach them all compassion, caring and everything a human being should be!
Wow...that has been building up for quite a while!
Thank you again Janette and I am so pleased that you have a good Thoracic Consultant too and I wish you all the best. Just one question! Why is there not a booklet given to each cancer patient explaining their treatment post op and what to look out for and when to see your Dr. or Consultant etc.? I know and appreciate that the NHS is on it's knees but I wouldn't mind paying for a booklet with explanations and help. I hope I haven't bored everybody but the pain, coughing and bad memories are bringing me down today! I will be happier tomorrow, I promise. Thank you for understanding Janette.
I empathise, Annie - glad you're able to vent on here - as you say, if you don't, it builds up.
I have to say I found the whole process very frustrating and less than satisfying and also advised that having to keep writing down every detail was not helping me move on from my cancer experience to get on with my life. I don't think compensating people with public money earmarked for healthcare is a good use of resources and doesn't encourage places to change and improve which is why I didn't pursue that avenue. Some hospitals have a space for a patient experience to be shared with their Board for learning - might be worth pursuing this via the Quality & Safety director or lead nurse at the Trust involved.
I used my frustration as energy and offered to help with patient literature for Roy Castle then fundraised by swimming to recover my fitness as within months of my surgery, we'd lost a very dear friend to lung cancer (widespread across his other organs) who died within 10 days of hospitalisation and 3 days of diagnosis at another Trust in our area. When I looked online at patient forums, I saw that many men had the symptoms our friend had yet were not even x-rayed - just sent off for physio for their shoulder/back pain (which in his case turned out to be bone mets).
Roy Castle charity invited me to a conference in Birmingham where I met a lung cancer patient advocate who encouraged me to get more involved so I have! Since 2014, I've become more involved and now attend and speak at conferences and policy committees where lung cancer services are reviewed, clinical trials developed/monitored and service design considered.
As for a booklet, my local tertiary trust (Heartlands hospital, Birmingham) had developed a book and CD for every surgical patient and I told them I wished it had been around when I had my surgery. I helped comment on it and it was incorporated into the information now on the Roy Castle lung cancer foundation website.
Have a look at ''information' lung cancer treatment' surgery', 'my lung surgery booklet. It suggests milestones and how the process is run from first appointment, pre-op, surgery and recovering from surgery and considerations for post surgery such as driving/flying/work etc. Download the booklet on this link roycastle.org/about-lung-ca...
Hope you're soon feeling better - sometimes we have worse days but recognising these will pass is part of the battle.... good luck and take care x
So very sorry to hear of your experience and how difficult and disappointing this has been in explaining this to the Doctors involved, it would be hoped that great lessons would be learned from this. The forum is a great place to offload, share and hear other peoples stories.
JanetteR57 has provided a wonderful response to this along with some valuable information.
Thankfully, you have a trusted Thoracic Consultant now, that will make all the difference for you and am sure you will receive excellent care and treatment. Hopefully they will help manage the symptoms you are having just now and improve your quality of life, or at least make you feel a bit better and more yourself.
We have many booklets on lung cancer including: diagnosis, living with lung cancer, surgery, radiotherapy, chemotherapy, immunotherapy and targeted therapy.
These can be posted out free to you and can be requested online:
Do let your specialist know if you are not getting pain relief, and this may need to be reassessed. There should be a lung cancer specialist nurse allocated to you, if not your Consultant or GP can request one.
We provide lung cancer information days for all those affected by lung cancer, including family and friends, the day includes speakers from Surgeons, Oncologist, Radiographers etc. Details of the dates and location of these can be found on this link:
Thank you so much for your support and advice and I will do as you suggest. I have had one of the worst night's I have ever had with crackling, wheezing and coughing and then being violently sick with a lot of fluid. I have 4 pillows and a cushion to keep me upright in bed, had taken Losec then later Gaviscon but then the above happened and I feel so awful. If I knew why this is happening then I would cope. My husband has had to take today off work and rang our Surgery which is closed for a Bank Holiday!
If it happens again today my husband will have to phone NHS 24 because I can't keep going through this and last night was so frightening. Then the niggle comes back that the cancer has returned although I did not ever have a cough before the pneumonia and Lobectomy.
Thank you again and I am so pleased to have joined as I have had support and wonderful advice already from lovely, kind people and thank you for all that you do.
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