HELP PLEASE MRI Scan was misread

[Family Man]

I will try and keep this very basic - but I would like some help and advise please.

 

Male 47 - Fit and healthy

 

Not feeling well early Jan 2008 diarrhoea loss of appetite weight loss & jaundice.

 

CT Scan carried out at local hospital admitted for ERCP and fitting

of a stent in bile duct. Out of the blue, letter received from Oncology Hospital

advising of appointment in February 2008. No mention of any diagnosis of

cancer at this point from any Doctor.

 

Appointment then cancelled at Oncology Hospital and new appoitment then

booked with original doctor went over symptoms and fitting of stent etc and then

awkwardly advised me that I had an “aggressive” cancer. Was told to look it

up on internet etc ! Queried why nothing mentioned previously.

 

Further blood tests done and MRI/CT done Confirmed diagnosis by a Professor

at another hospital as Cholangiocarinoma.

 

Phone call in March was told that they were not considering operating as this

would be of no benefit to me tumour had spread into “artery” - “lobe”.

Said this was “devastating news”. Would now be refered to yet another

hospital.

 

:mad:Do they not have some duty of care in dealing with patients ?

 

Visited by Macmillan Nurse, was advised to update my will and arrange funeral

and put life in order

 

April, now at my 3rd hospital further CT chest, pelvis, triphas liver,scan and

blood tests. ERCP - stent refitted discussed possibility of being accepted

onto clinical trial. Not a cure, prolongs effective bile duct to reduce blockages.

Letter received from Hepatobiliary Surgeon re findings to date ie imaging at

that time showed a tumour in the hilum …

 

Now told might be able to remove the bile duct and cancer was advised of an

operation to kill off the bad section of my liver would encourage the remaining

part to increase in size and allow for operation to remove tumour. would not

confirm success of surgery at this point.

 

Two operations (Key Hole) done to kill of the bad part of my liver in

April and June. Growth not as expected.

 

July Hospital team happy to carry out operation but explained risks involved.

 

♦ May start op but decide not to go any further.

♦ May be unable to remove tumour or all cancerous cells.

♦ Risk of not surviving op.

♦ Risk of liver failure.

♦ Risk of infection.

♦ Assuming surviving op first three days most important as risk of liver failure/infection. Then further three weeks high risk of infection.

 

In ITU for 1 week and hospital for 1 month discharged home with a very bad

leaking wound and bad infection with a major discharge for 2 months.

 

NOW THIS IS THE CRUNCH IT WAS NOT CANCER BUT A

DIFFERENT DIAGNOSIS -(IT TOOK SOME TIME TO GET THE

DOCTORS TO CONFIRM THERE NEW DIAGNOSIS).

 

I queried why more tests weren’t carried out I explain the long term financial

implication this would have for us the emotional turmoil etc. But no one seems

bothered about this !

 

Was later advised diagnosis was auto immune pancreatitus. A simple blood test

would have shown this was a desease that can be sorted with basic medication.

 

From first beginning diagnosed as Cholangiocarinoma by 3 hospital and

many many doctors, leaving my job I have done for 23 years, I have found it very

hard to get my head round this misdiagnosis, the huge financial loss, emotional

turmoil, physical state that I am in.

 

I was always told that I had 100% bile duct cancer.

 

I am now seeing a Clinical Nurse in Psycho-Oncology this has helped - but I now hope there is someone who has been through the same as me, someone

who can help me get back to a normal life.

[raydetinu]

So So sorry to hear all this, must have devastating right from the start. I do hope you have family and/or friends that you can count on for support.

The only thing I can suggest is to get a very good solicitor, one that is experienced in these medical negligent or sort of cases and start proceedings; This will take a very long time to sort unfortunately but in the end will be worth it I am sure.

I base this on the fact that a very close friend of mine had a very similar mis diognosis thing 15 years ago, and got a substantial payout, enough to buy a house. It took 5 years!!

[Family Man]

Thanks raydetinu.

Yes I have been very lucky, the sad point it that this is not the 1st time - 11 yrs ago I was told I had bowel cancer that turned out to be yet another misdiagnoses.

I have taken legal advise and have instructed a good solictor - I also have a policy that has covered the cost of this (up to £100,000) - so I thought why not....

 

[mree]

Your story is distressing, but why is the first thought always to sue the NHS? Are we turning into America?

[GALLACHE]

mree I too have been through a very similar situation to family man, as well as the physical, emotional impact I lost my home, my marriage, job becuase someone made a snap decision and didn't undertake the very basic checks which were available to them to ensure this sort of thing doesn't happen. My life was ruined for nothing therfore why shouldn't someone pay for that to help my future.

[Family Man]

Thanks for your comments mree - 11yrs ago I was misdiagnosed with bowel cancer - again told I had a short time to live, I was younger and stronger with a young family, and a fighter. I did not take any legal action but got on with my life and returned to work.

This time has been so much harder for me and my family, I gave up my work/job of 23yrs and both my wife and I travelled 200miles return to the hospital that was dealing with my illness, we had hotel costs travel cost and NO:mad: help from the state as I and my wife both worked hard and saved hard. (and had money in the bank). I spent evey weekend with the people I love (my Son and wife) we injoyed the time together aware that I had made ample provisions with life assurance that would pay out on my death. We spent our money - The money that we had worked hard and saved hard over many years to get. Yes I am very happy that I am not going to die, but not happy that I have lost the past year and lost money that we used to fund our expences. I am old school and have always pulled my weight in life, but we both feel we need to be compensated for this diagnoses, stress, wifes loss or earnings, my loss of earnings, and then trying to get back to normal.

[poppynurse]

I certainly think it's worth exploring the negligence aspect. A cancer diagnosis is quite rightly devastating and for this to be given incorrectly and this view sustained over a considerable time period is unacceptable.

 

There are 3 elements to a clinical negligence case-

Duty of care - clearly there was.

An act or omission that a reasonable practitioner would not have made - difficult to determine without full access to your notes but this criteria would appear to have been met.

Harm resulting - you have definately suffered harm as a result.

 

Make sure you find a solicitor that specialises in medical negligence cases and be prepared for a long haul fight - the NHS/Doctors do not admit their failings easily.

 

The first step is to get hold of copies of your notes from each trust that dealt with you - and do this quickly.

 

The next step is to write a formal complaint to the Chief Exec of each Trust involved and detail what when wrong and what you want done about it. You need to go through the complaints process before taking legal action (it will look better in future court action).

 

Good luck with this and enjoy your new lease of life x

[Family Man]

BUMP

[raymy1954]

check out cancer missdiagnosis thread given months to live in 2005

[raymy1954]

Thread Is On Same Page 5stars

[poppynurse]

Keep going with the solicitors Family Man, and keep us posted.

 

best wishes

[Family Man]

http://www.dailymail.co.uk/news/article-1200071/Lorry-driver-mistakenly-given-months-live-spent-heartbreaking-Christmas-wife.html

 

So it looks like I am not the 1st one...???

[Sali]

I respond to an earlier post by mree, who, I am sure works within the NHS.

 

If hospitals, - doctors, nurses, hospital managers - would acknowledge their failings promptly, apologise and either remedy the error or immediately compensate (although no money will come close to doing that in such cases as this), then there would be no need to sue.

 

It may seem to you that everybody wants to knock your profession, but look at it from the patient's or their relatives point of view.

 

I think the NHS has become complacent and perhaps litigation against the hospital managers is the only way to change this.

 

Family man, I wish you well. You have had a traumatic journey - twice! If you haven't done so already, apply for your hospital notes using a Subject Data Access, specifically asking for all your scans etc.

[Family Man]

Thanks Sali

 

I have now received a copy of all my medical notes via my solicitors, we have found this very interesting reading.

 

1997 - 'Diagnosed large bowel obstruction due to recto sigmoid mass, possibility of tumour highest on list of possibilities'

This turned out to be diverticular disease.

 

2008 - 'Most likely to represent a cholangiocarcinoma'

 

This turned out to be autoimmune pancreatitis IgG4

 

In both cases I was told I had Cancer, and my medical records show this, in 2008 we were told that this was 100% cancer, for 7 months we were told no different.

 

Also looking at my medical notes the hospital took 13 days to tell us that this was not cancer 13 days after the operation.

 

Will keep you informed and updated on my progress.

[raymy1954]

My notes from 2005 say most likely a pancreatic adenocarcinoma 3 years later its a well defined neuroendocryne tumour seems most likely is a common phrase

[Family Man]

Up date.

 

This is now really getting me, a report has been drafted by an independent doctor, my wife and I feel that this has been drafted to discredit the true nature of my claim, dates have been changed on reports and even the original MRI scan that I paid for has gone missing, My solicitor has advised me to put a line through the whole sad case as I am not getting a truly independent report, it seems to me that in this kind of work not one GP, Doctor's, Professor's, or Clinical Specialist is truly independent, it's what I would call the 'Old Boy's Club'.

 

I think I will take my story to the national press as I have been approached by them to tell my story, but I thought it best to hold back on this as it might effect my case againts the 3 NHS Trusts. I will up date you on this forum if I get it published.

 

Thanks to all. Not a happy 'Family Man'

[Sali]

I'm so sorry.

 

As I said before the NHS as it stands festers a culture of evasion and cover-up and the new rules on local resolution will not change this - more likely to encourage it.

 

There has been fierce debate in the US on healthcare where our NHS has been dubbed 'evil.' I wouldn't go that far -there are still many, many hardworking and dedicated people working within this organisation (who are becoming ever more disillusioned). However, this government has contributed more than most in the decline in standards of the NHS. Just throwing money at it is not good enough. It seems to have ended up in the wrong (management) pockets. Fearful of litigation and mindful of targets that could effect budgets or their (personal) status, the management no longer focus on the patient's needs, or those doing the hard work.

 

Ann Keen MP recently said that our NHS is the envy of the world. I loathe this woman anyway because of her willingness to wangle every last penny in expenses out of the taxpayer, but I am just ever so bored of hearing endless spin from politicians, who seem to think that Joe Public have all had frontal labotomies.

 

Soon complaining against the NHS will be like drink driving - just not acceptable.

[mkb]

I would be looking for another solicitor! The independent report cannot overlook what you have in B & W in your copy of hospital notes surely?

[Family Man]

Thank you all for your personal messages.

My wife and I are in the process of drafting a letter back to my Solicitor this weekend. So far we have covered many point, like the so called tumour had in fact got smaller (2cm in January then 1cm in August shown on MRI/CT and ERCP) the change in dates on medical forms, missing paperwork and the missing 1st MRI scan that was done private in January 2008.

Only two months ago this scan was shown to me and my wife in clinic as we both had questions so I know it's there on the system.

I have found an artical from the Consultant Gastrenterologist who I never got to see until after the operation, he states that this is a recognised condition and may be more common than previously thought, biopsy tissue are available from a wide rage of organs, (never had one taken) the trust has been awarded a grant to carry out research (early 2007) and have been able to tell several patients that, contrary to the opinion given they do not have cancer, but a benign disease with will respond with medical therapy...NOT ME:evil:

[Family Man]

I would like to keep this short & sweet.

 

I am in the process of a medical negligence claim via my solicitor (see 'given months to live') I have in black and white that 4 years have gone missing on my GP report, I can confirm that I attended my GP over this time as I have got a list of medication from my local pharmacist that cover the missing 4yrs.

I also have many letters from the hospital that my case was discussed at the Multi-Disciplinary Managers Meetings, but these have also go a miss.

 

Can anyone give me some help on how I can get missing information that seems to be held back and not released, information that is very important to my case.

 

Thanks for your help in this matter.

[MRSWESTHAM]

Hi ya

 

Have you requested a copy of your medical records from your GP (Ensure you ask for all computerised records too). If they are missing from your actual GP file you need to write to the Practice manager querying where they are. Unfortunately if its the old style lloyd george card records there will ony be paper consultations and notes and if they are gone from your file and there was no computerised consultation, i dont think you can prove there were GP records. You can however request any hospital letters are resent to the GP for this period of time.

 

Also was there anything in your notes they may prove detrimental (sorry spelling !?!) to your mental health as these are the only notes GPs are legally allowed to withold from you.

[Family Man]

Thanks MRSWESTHAM for you swift reply.

 

I and my solicitor have a printed copy of my GP notes going back to 1991, but from 2003 to 2007 there is an empty section not a single entry. (I was late in 2007 diagnoised with terminal cancer, this was not the case (after I gave up work etc as I was only given months to live) I am aware (100%) that I had been to see my GP due to my illness in 2007 and medication was given to me for symptoms that contributed to my miss diagnosis. This has been confirmed to me by my local village pharmacist, and I have a printed copy from him to confirm that I have recived a medication from my GP via a perscription.

 

I do not have a mental health problem, but might have one soon if the NHS do not disclose all information to me:mad:

 

So the answere to your question is yes I have a copy but information is missing and all this has been printed from my computerised report.

[MRSWESTHAM]

Okay i think you need to go back to your GP and ask for the written records. At the surgery i work in we started using computerised records as late as about 2007 although some of the older doctors still used lloyd george cards (paper ones) as they didnt get on with the computers!

 

You need to check the paper ones first, Put it in writing to the Practice manager that you want to do this. You will probaly have to do it at the surgery accompanied by a receptionist. Good Luck hope you find what you need

[MsWeatherwax]

Seconding everything from MrsWestHam, but also adding that it would be very, very much in the interest of the surgery concerned to find these notes, pronto.

 

I've read your case, which is obviously very distressing already, and I would hazard a guess that if these notes don't turn up it will go just as badly for the surgery as if they had handed the notes over with detrimental information in them.

 

Very best wishes, and I hope all of this is over for you soon.

[Family Man]

Thanks MsWeatherwax..I can see you point 100% - But I do not want to 'upset' or 'rock the boat' with my GP - they have all been very good to me over the last few months as I and my family were on tenterhooks with regards to my health. I think I will ask my solicitor to ask my GP direct, I think this might be better comming from him..Keep smilling as they say:)