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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.
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.
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!!
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 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.
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 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.
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
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.
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.
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
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.
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.
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
Although a month has past since I discovered this thread, I would like to comment, from my own experience, that it is difficult to find an honest solicitor.
"Nepotism" has never been so rife between the medico/legal professions.
My wife entered hospital, for day surgery, for a neck biopsy. She was diagnosed 9 (NINE) days later with "Small Cell Carcinoma (Cancer) of the Tongue" and passed away a further 15 days later.
Because the Coroner's Officer declared death as "Metastatic Lung Carcinoma", no solicitor was interested because Lung Cancer has a poor 5 year survival rate. She had only ceased smoking for the previous 6 months so causation could not be proven.
However, following the initial complaint and two independent reviews, it has been decided by clinical experts that the chest x-rays showed no evidence of cancer? Guidelines for doctors prohibit the use of "Metastatic" or "Metastases" on a death certificate. One almighty anomaly, to say the least?
I followed the suggested advice of a "reputable" London firm, gained access to 300+ medical notes and forwarded them to the solicitor for an appraisal.
They returned notes to me 2 years ago, but not until 3 months ago, I had to get them from the desk drawer to recopy one that was accidentally deleted from the hard-drive. Over 100 of the notes had disappeared.
Let's hope the solicitors think they've gotten away with withholding evidence, because I had scanned them all before letting them have them.
You've always got to fight fire with fire.
It's with thanks to 3 members of CAG that I fought and successfully defended my brother's bankruptcy. So I'm up for another challenge.
It's as "Sali" has stated, "If hospitals, - doctors, nurses, hospital managers - would acknowledge their failings promptly, apologise and either remedy the error", there would be no need for litigation.
Was Given Months To Live
in March was told that they were not considering operating as this
Do they not have some duty of care in dealing with patients ?
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