missdyagnosed
missdyagnosed Hi there!,
Last year I went to my gynecologist at Queen’s Charlotte Hospital for a regular check up and I informed my consultad I could feel a lump under my right breast, he couldn’t feel it and concluded it was nothing!!!, when 6 monts later I came back and I told to a new consultand about the issue he sent me to the Charing Cross Hospital when it turned to be cancer. I have complaint about it to the hospital but I got nothing but and stupid and useless apology so I was thinking that many woman would be in my same situation and I strongly believe that we should do something about it to try to put into the public eye what is happening in the NHS, maybe we could contact a newspaper, MP or even the Primer Minister, but I really think we shoudn’t leave this issue without traing to point it out.
Monts
Persistence Hello
I have a similar story, I went to my GP with a dent rather than a lump, which I felt, was not right. I was told that this was being caused by previous surgery, I have had bc before.
I went to see my GP on a few occasions over a 12 month period until in the end I was referred to the Breast Clinic where after a biopsy it was confirmed that indeed it was cancer. I cannot fault the hospital my treatment after diagnoses has been first class, but the time it took to get me there leaves a lot to be desired.
I did phone my GP and make them aware of the fact that I did have cancer and I think it shook them up a bit, well I hope it did. You would think that with me already having had bc before they wouldn’t take any chances, good job I was persistent.
Jan
Please take action Monts Hi Monts
My heart goes out to people like you. We must take action. You do not say at what stage your cancer was found at when you were eventually diagnosed. I can help you in many ways. I was misdiagnosed by 4 years. My GPs said I had nothing to worry about on 3 occasions. When I asked for a mammogram I was refused on the grounds that I had nothing to worry about and I was under 50. I eventually put myself into the system at 50 only to be told I had advanced invasive lobular breast cancer - had spread to 15 of my lymph glands. I have been trying to pursue a medical claim for about 15 months now. I contacted the Scottish Ombudsman and the General Medical Council. Both are not upholding my case. At present I am taking the matter further with my MSP (I live in Scotland). In my opinion, the GPs cannot possibly be negligent when it is written in my clinical notes that I had been to see them with concerns re changes. However, the system is set up in such a way that they seem to be able to get off with it. Have you filled in a complaints form at your Hospital? You must put everything in writing. I have mentioned it to Breast Cancer Care but haven’t really had a great response. Please tell me which part of the country you are in and I will do my best to help you. If you live in England it may be worth writing to Cherie Blair - she is the patron of Breast Cancer Care.
I have joined a campaign group in order to try and make changes.
I have to go now but please keep in touch. Doctors are playing with our lives and we need to make changes.
Sending lots of big hugs.
Jeannie
My experience I was recalled after a mammogram in March 2003 and told by a consultant radiologist I had three cysts. 7 months later I was diagnosed wuth grade 3 4cm breast cancer and spread to 23/25 nodes.
Through a solicitor I got an independent oncologist’s report which said that the consultant had been negligent but that I wouldn’t have a legal case for compensation because you also have to prove causation ( a technical term to do with survival).
I pursued a complaint through both the Healthcare Commisson and the General Medical Council. I have had a full apology from the Hospital Trust (initially they declined responsibility but the Healthcare Commission forced them to apologise and to make changes in procedures…my consultant didn’t keep notes!) and the doctor who misdiagnosed me faces a Fitness to Practice Panel of the GMC next March. I will be a witness.
The same doctor also faces a bigger charge (My case is being taken with the bigger one) as a result of widespread mismanagement in the whole breast screening service in that part of Essex. Many many women had to be recalled following wrong diagnoses. Some have hit the local press headlines but so far I’ve not gone public with my story cause I don’t want that kind of populist publicity. The case will be heard in public as are all Fitness to Practice hearings.
By the time the hearing happens it will be 4 years since the misdiagnosis. Pursuing a complaint is a bit of a rollercoaster. I think its important not to get obessed with it and not to go down the route of ‘what ifs.’ I don’t know whether my misdiagnosis has made any difference to what happens to me…I’m grateful to be well and NED at the moment. (statistically it reduced my likely 10 year survival from 42% to about 18%.) My cancer was locally advanced by the time it was disgnosed and my prognosis isn’t good but it wouldn’t have been good anyway. Sometimes I think the delay might ironically have helped me because after AC chemo failed I got taxotere…and probably 7 months before I wouldn’t have had chemo prior to surgery and may not have had taxotere. Strange way of seeing things I know but it helps. I don’t want to get into being bitter that it was the nasty bad doctor who caused my breast cancer. He didn’t though in my opinion he’s a shit doctor. I have seen people eat themselves up with bitterness over misdiagnosis. I hope I haven’t
I have simply pursued what I think is right and haven’t taken no for an answer. I hope next March the doctor will get some kind of reprimand (he’s still working by the way…despite all the charges against him and the numbers of women affected by his mismanagement.) I know my ‘day in court’ will be painful but I hope the bad practice that my case and others like it have revealed will help others not to get the mistreatment I got.
Jane
Message for JaneRA Hi Jane
You may have seen a couple of my postings before. I kind of “dip in and out” of this website and sometimes I don’t go on for ages. Please forgive me if you have posted to me in the past.
It is interesting how we all follow different routes in connection with medical negligence. I have not contacted an independent oncologist as yet and I am wondering if this is another avenue I could take. I initially lodged my complaint with the GP practice concerned. Thereafter I went to the Ombudsman. The Ombudsman has written to me saying she is not upholding my case. I also contacted the General Medical Council and they too are not taking my case any further. The GMCs interest in my case was poor and their report has many mistakes. I could write to the GMC till the cows come home but once they say they have closed the case, they stop listening. They referred to my Ombudsman’s report throughout their investigation. Therefore, I now feel that if you get one rejection you are likely to get rejection all the way. I’m not finished with the Ombudsman yet - had a meeting with her this week. This was fixed up by my MSP. The Ombudsman said she is not able to reopen cases. I quote from her letter “once I have issued the report of an investigation I am, to use a lawyer’s term, functus officio; that is, I retain no legal authority because my duties and functions have been completed”. I feel as if the whole system is fixed in such a way that it is almost impossible to break through. I did get a GP Expert’s report done. His report was appalling - a complete waste of money. Again, I felt because I had been rejected by the Ombudsman and the GMC he followed suit.
I fully agree with you about not eating yourself up over misdiagnosis. However, I have tried just about everything in the book to stop myself being eaten up and so far, I haven’t managed it. I am a lot better than I was when I was first diagnosed. I do manage to think about other things now. However, I remain very concerned that the system allows GPs/Doctors to continue practising (without warning or retraining) when I am sure they know full well they were incompetent - diagnosed on something that needed further investigation. I think any lump should be considered guilty until proven innocent. I would be interested to know roughly how much an independent oncologist report might cost.
I think you have a very good attitude to your cancer and I hope you continue to do well. Keep me posted.
Regards.
Jeannie
Dear Jane,
I hope I’ve got the right person, do you post on the other site?
I’ve just caught up with this post and hope you don’t mind but I have a couple of questions re care.
From what I’ve read I think it may be possible I’m being treated in the same area as you.
I’ve was only told 4 weeks ago that I have inflammatory bc, after 7 months of chemo.
This was a huge shock.
Had an appt with the surgeon and as my onc was on holiday another onc, whom I’ve never met, matter of factly dropped the words ‘inflammatory bc’ into the conversation as if I knew.
When queried the surgeon talked about ‘clinical’ names?
Prior to this I had only ever been told I had a ductal carcinoma.
I have to see this other onc next week, and I’m not sure why he’s suddendly taken over. Felt perfectly happy with the onc I’ve had all along, he knows me, but this guy has come in and is making important decisions about my breast after seeing it only once.
If you are on the other site Jane will you pm me the name of the hosp where you had your treatment?
Many thanks
Jackie
x
Hi Jeannie!,
I really appreciate your suggestions they have been really helpful for me and I am intending to write to Cherie Blair as you told me. I was wondering if you know if there is any association of victims of medical negligence’s I can contact to. I live in London.
Thanks I hope we keep in touch and all the best.
misdiagnosed 1 Hello everybody!,
First of all I want to thank you all four your answers they have meant a lot for me.
I would like to make some points clear. I think that having A GOOD NATIONAL HEALTH SERVICE is really important and is a SIGN OF THE PROGRESS OF A COUNTRY, (in case there is one), and moreover WE ARE PAYING FOR IT (much more than I’d like).
It tis not a matter of biterness but I believe that I have the right to expect for a good diagnose, my GP tried to convice me that a 6 months misdiagnoses wasbn’t a big deal but, HOW ON EARTH CAN SHE KNOWS THAT WHEN AN EARLY DETENTION IS THE KEY OF ANY CANCER AWARNESS PROGRAMME, anyway my point is that I DON’T WANT ANY OTHER WOMAN OR PATIENT TO GO TROUGH THIS PATH if I can do something about it.
I have raised a complaint against the Queen’s Charlotte Hospital in London, particulary agaings Mr Pat Soutter, Consultant Gynaecology Surgeon but, the only thing I got was an useless, silly and frustrating apology. I couldn’t start any legal actions as I have no probes because he didn’t reflect this issue into my file and the lawyers I contacted told me I wouldn’t get anytuning.
I got an invasive multifocal ductal carcinoma in second grade and I am 37 years old, I am being treating at Charing Cross Hospital in London but I am not happy at all with the way things are going in the Hospital as I think they lack of any interdisciplinary communication and they are more worry about going home than about taking care of the patients.
Although I can’t start any legal action my aim is to try to do whatever is needed so my case and other similars appears to the public to point out THIS BIG PROBLEM and that is why I would like to join you to do something together.
When I expossed my case and intentions in the HAVEN (breast cancer association) I was told to post and add in this forum. In my opinion their work should go further and more socialy involve as I truly believe an iniciative like this one can save more lives than any complementary therapies.
In Spain some breast cancer associations offer a free mammogram to any woman who would like to have one. I think it would be great if we could have the same service in U.k.
Thank you I hope to hear from you all XXX
Monts - Please report Hi Monts
Thank you for your kind words. We are all here to support one and other and if there is anything I can advise that is helpful to you, I am more than willing to do so.
I haven’t been on the site for over a week - so sorry for taking so long but that’s the way I tend to work.
Yes, I think you should contact the National Patient Safety Agency and report your problem. Although I reported it to them I also reported it to the Scottish equivalent - NHS QIS. If you go into their website www.npsa.nhs.uk you should be able to pick up the appropriate link. I’m not very good with computers so I phoned and spoke to a lady called Louise. She then told me what to do. This will do no harm and the more they hear about incidents, the bettter.
Let me know how you get on.
Take care.
Jeannie
Hi Monts Hi Monts,
See my profile.
Best wishes,
Sue
P.S. Jeannie is right about reporting delays to the National Patients’ Safety Agency (NPSA). See my profile for details on how to do this.
Hi Jeannie You asked about cost of independent oncologist. Well I paid £1000. This was for a top guy who often gives evidence in negligence cases. I found him through a solicitor who I contacted about the chances of a compensation claim. A lot money but I wanted to know whether I had a civil case and I trusted his judgment and knowledge of the law thatI ddidn’t.
The law as it stands in England and I think in Wales is that you can’t get a compensation payout unless you can prove both negligence and causation. Causation means that in cases of cancer you have to show that but for the ngeligence you would have had a 50% chance of surviving 5 years. The onc. reckoned I had a good case for proving negligence but not causation (my prospects of 5 year survival would have been statistically less than 50% even if I had been diagnosed 7 months earlier.)
I learned at that time as a by product that all the talk about the benefits of early diagnosis, while true up to a point, isn’t entirely accurate. However early you get some breast cancers they will still spread…trouble is no one knows for sure which ones they will be.
I think I was lucky with the GMC…the solicitor was amazed I got the doctor to a hearing (I didn’t use a solicitor once I knw I didn’t have a civil case…couldn’t afford to.) By the time my complaint got to the GMC the bigger scandal about the management of the service was in the public arena and that probably swayed the decision my case. I think the Hospital Trust probably sacrificed the doctor to let themselves off the hook (it was their lack of procedures which enabled the doctor to get away with poor practice for years…or at least that’s what I think.)
You can contact me privately through the other site if you want more info.
By the way my case starts on March 19th next year and if anyone has a spare 2 weeks come down to London and hear it with me. I’ll let anyone interested know details nearer the time (March 19th.) It would be good to have support in the ‘witness box.’ (assuming I’m still well…)
Jane
Thank you JaneRA Hi Jane
Thank you for getting back to me with an approximate independent oncologist cost. It sounds like a lot of money to me. I may have to consider this for the future. I hope you do not mind me asking - what is the role of an independent oncologist? Can he tell you how long you have had your cancer and what the difference would have been if diagnosed earlier? Can you proceed a medical negligence case without one?
Although my Ombudsman case has not been upheld I have had a meeting with the Ombudsman (arranged by my MSP) and further investigations are now taking place. I do not see any point in trying to have further discussions with the GMC until I get some feedback from the Ombudsman. I did not feel the GMC were interested and they kept referring to the fact that the Ombudsman was not upholding my case throughout their investigation. I need to hear what the Ombudsman has to say before taking matters any further.
I had thought of going to some women’s magazines with my story. However, I have been advised not to do this at this stage as it could jeopardise my case. Had thought Breast Cancer Awareness Month would be a good time but I will be lying low.
Thank you for your help. I will let you know how things progress.
Keep well.
Regards
Jeannie
Jeannie,
I too live in Scotland, if u have ever seen any of my postings I have had major bust up with genetics dept about breast screening at a younger age (Im 26 at the moment), my mother had b.c at 48, we’re not sure if theres a history as her mother was adopted at birth.
I’ve got the opportunity to go to the ombusman, but I wonder from some of the cases that I read is it worth the hassle. I dont understand how any gp can get away with misdiagnosis, coz at the end of the day u reported it, like they tell you to do and they didnt action it, I find that very odd.
Put a whole new meaning to ‘getting away with murder’
Sharleen
Sharleen Hi Sharleen
I think I have posted to you before. From memory, I think I said to you to try and contact Professor George’s Breast Clinic in Glasgow.
Have you tried phoning Breast Cancer Care’s office in Glasgow - they may be able to point you in the right direction?
The Ombudsman form is not complicated and it may be that you want to fill it in. Also, its free.
It does appear that GPs get away with murder. However, I am still fighting my case.
I hope you manage to get something sorted out.
Regards.
Jeannie
More information for Jeannie I got an independent report after I had pursued my case through the local complaints procedure. The Hospital Trust against which I complained had got their own independent report which said that there was insufficient evidence that I had had cnacer 7 months earlier. (one of the reasons for the insufficient evidence was that the consultant failed to keep proper notes: so catch 22.) I was told by the Trust that I had an ‘interval’ cancer. (This is when breast cancer presents itself in the interval between screening…this does happen…aggressive cancers can apparently appear suddenly and mine was an aggressive one.)
A solicitor I consulted thought I might have a case for complaint and so I needed my own independent report to counter the one the Trust had. This report was different and yes the oncologist did say that that it was biologically implausible that I didn’t have the cancer 7 months earlier. Yes there were lots of very complicated calculations about the tumour growth rate and how many nodes might have been affected 7 montsh earlier. No one can know for sure and in legal cases its all about one expert witness against another.
I must emphasie that in English law you can’t get a penny of compensation unless you can prove causation as well as negligence. This is hard to swallow because you are faced with the reality that earlier diagnosis may not have made any or much difference to survival (though in my case I think a reduction from 42% to 18% is worth making a fuss about…but the law thinks otherwise…this was tested in the House of Lords about 18 months ago.) This flies in the face of accepted wisdom that early diagnosis is a good thing…well it is…but the real picture is much more complicated. My solicitor once said that with cancer the die are cast with the tumour you get…a bitter pill indeed to swallow.
As one of life’s complainers I think its imporant to complain through all the channels we can…but in this…the hardest complaint of my life I think I’ve learned that its important too to accept that sometimes mistakes happen and we just have to live with the consequences. And sometimes too we want to complain because we want someone to blame…but sometimes there just isn’t anyone to blame.
best wishes to fellow just complainers,
Jane
Thank you Jane Hi Jane
Thanks for telling me more about the independent oncologist report.
I had a long reply typed last night and lost it in the system. However, I am now thinking it could be fate - I’m kind of “sitting on the fence” at the moment and it may be better not to say too much.
What really concerns me is the difficulty of ensuring that such people as are responsible for my condition being worse than it could or should be (eg my GPs) are apparently able to keep mistakes concealed, mistakes that could occur to others if same GPs are not required to retrain in subjects in which they made mistakes. Both the Ombudsman and the GMC are prepared to cover-up. Do you know if there is an organisation that you can complain to if you are not happy with the outcome from the GMC? Their investigation in my case has been very poor. However, they can close the door and say “your case is now closed”.
I’m finding “Breast Cancer Awareness Month” quite upsetting. Upsetting because I was very breast aware and have been caught out badly. What about having a “GP Awareness Month”? Some GPs are playing a lottery game with our lives.
Will keep you posted.
Regards.
Jeannie