Prime Minister, Mr Tony Blair
10 Downing Street
London SW1A
30 July 2006
Dear Mr Blair
I have been reading of your plans to urge the nation to take more responsibility for their own health and to move away from the so-called Nanny State.
I would be grateful if you could read this letter and give me your view.
More than three years ago, in March 2003, my new husband was diagnosed as having an inoperable dissecting aneurysm by Sir Professor Peter Bell at the Leicester Royal Infirmary. As you can imagine both my husband and I were devastated by this news because my husband was only 52 years old and very healthy in other respects. In fact, had he not been told of the aneurysm then he would have been none the wiser because it didn’t produce any symptoms. My father died of a ruptured aneurysm 9 years ago not knowing it was there. It was a very sudden and painful death that shook the whole family. You can imagine how upset I was to learn that my new husband was going to die the same way.
I contacted Sir Peter and we corresponded for 7 months - I wanted to know how best to care for my husband. He told me that I shouldn’t allow him to be stressed and to keep his blood pressure under control. It was an impossible task trying to keep a dying man from feeling stressed plus, as a driving instructor, I had no idea how to keep his blood pressure under control. I felt this was a huge responsibility that Professor Bell had given me and I became stressed because I felt responsible for his life but, worse, his death. It was more than 7 months before Professor Bell agreed to refer my husband to a blood pressure specialist, despite telling me to keep it under tight control to reduce the risk of his aneurysm rupturing.
Sir Peter Bell retired and I lost contact with him. I felt lost, so I started researching the internet for help and support. I came across an Aneurysm Support Group hosted by the University of West Georgia in the USA and I posted a narrative on there. To my surprise I was contacted by Professor Valluvan Jeevanandam, Head of Cardiovascular Surgery, at the University Hospitals Chicago who invited me to send my husbands MRI scans. A few days later he emailed me to say that, in his opinion, my husband was not inoperable and, indeed, could save his life with an 80% chance of success.
I then sent the same scans to Dr Joseph Coselli in Houston, Texas and also to Professor Michael Jacobs in The Netherlands. All three were of the opinion that my husband was not inoperable - those opinions were given to us free of charge. Professor Jacobs told me that the NHS could fund private surgery anywhere in the world and urged me to obtain funding.
I approached the NHS but my husband was refused funding for his life saving operation on the basis that he‘d already had an opinion - even though that opinion was given by a consultant who didn‘t have the relevant expertise to give that diagnosis. The PCT were completely unaware of the Department of Health’s Policies and Guidelines that they should use to refer my husband to a relevant surgeon and they simply washed their hands of him. I am led to believe that Julia Squire, the Chief Executive of the PCT lost her job because of this.
The DoH Policy Document, that I found on the internet, clearly stated that Alan fitted all the necessary criteria for having his surgery paid for by the NHS on a private basis anywhere in the world. I pointed this out to them and appealed against their decision, with the help of an expert lawyer in London - Richard Stein of Leigh, Day & Co; Barrister Jeremy Hyam and our local newspaper.
The PCT eventually agreed to fund the surgery on a private basis. Their only condition was for us to establish whether surgery could be carried out in this country and if Alan‘s health would be further damaged by going on the NHS waiting list. This was a huge hoop we were given to jump through. Given that Alan only had 1-2 years to live, and his aneurysm had grown to a dangerously large 8.5cm, and we had already used up 18 months to get this far, the fact that the NHS wanted to find out if he could tolerate waiting another 6 months on the NHS waiting list was nothing less than death by attrition.
I contacted the British Vascular Foundation and I found that Sir Peter Bell was working there, despite telling me he had retired, so I resumed contact with him. Professor Bell said “No one can put a price on someone’s life, but surgery in the USA would be very expensive”. That comment, in itself, alerted me to the core of the issue and that Alan’s life did, in fact, have a price on it because his life saving surgery was too expensive. Why else was he not referred to a relevant surgeon? After a further 6 months Professor Bell reluctantly gave me the name of a surgeon in this country who could do my husbands surgery. That surgeon was Mr Robert Bonser of The Queen Elizabeth hospital, here in Birmingham. I had researched the whole world for 13 months and ended up right back on my own doorstep!!
My husband had his surgery 2 years ago - which Mr Bonser described as routine - and is now fit and well and enjoying a new lease of life.
The fight to secure my husbands operation took 18 months in total - he was only given 1-2 years at best to live, so you can imagine it was a frantic race against the clock for us. Mr Bonser said my husband’s aneurysm was “particularly friable” at the time of surgery and his life was saved literally in the nick of time.
We did complain to LRI, but nothing ever came of it. I arranged a meeting at LRI, with all the consultants involved, to talk about what had happened but Sir Peter refused to attend or, indeed, comment and no conclusion was ever reached.
I have enclosed some letters and I would be grateful if you would read them because I believe that what happened to Alan was extremely, if not criminally, wrong. I am of the opinion that my husband was sent home to die because to save him was too expensive for the NHS. As it transpired, his operation was far more expensive than it could have been because it was done privately - paid for by the NHS. Mr Bonser, ironically, would have been the same surgeon to do the operation, less expensively, on the NHS also! My husband is living proof that the NHS was extremely wrong to misdiagnose him, or fail to refer him to someone with the relevant expertise, or to deny him treatment. We did try to sue for medical negligence, but we couldn’t find a lawyer who would take the case on because the compensation wouldn’t have been enough to pay the lawyer and court costs. The LRI think they got away with it but, to my mind, it is unfinished business. As with seeking help for my husband, when I start something I have a determination to finish it.
I am now in the process of writing a book with an editor in the USA based on all the facts, some of which I have enclosed with this letter, because I feel strongly that there must be other people in similar situations who are being sent home to die rather than be referred to the relevant surgeon for a second opinion. The aim of my book is to urge anyone who has been diagnosed inoperable to seek further opinions because if this near-fatal error can be made once it can surely happen again.
I am of the opinion that the NHS are on a mission to save money and to reduce waiting lists by not allowing patients to have life saving treatment. When I discovered my husband was not inoperable and we were refused funding, we felt as though he was on Death Row - sentenced to death by the very service who claim to look after us. We both felt that the NHS was playing God with his life and deciding when it was his time to die.
I realise this is a very serious and controversial allegation but how else can it be explained? My husband was diagnosed inoperable by a Professor who had earned a Knighthood but I proved him wrong and my husband is alive and well two years after having had surgery.
How can all this be right Mr Blair? My husband was only 52 years old when he was sent home to die. Dr Coselli in Houston performs this type of operation on people in their 80s with equal success. I found all his qualifications in PubMed and they are there for the whole world to see.
You want the nation to take more responsibility for our own health, which is exactly what we did - but we had to fight the NHS, unnecessarily, for 18 months to do it. We took on that responsibility even though it was not our responsibility. I do not believe that just because Professor Sir Peter Bell is retired that he can be absolved from this near-fatal error. What happened to my husband is too serious to ignore and I have nothing else to lose now by seeking a conclusion. I hope my book will help other people find the help they need.
Finally, I would like to add that Mr Robert Stuart Bonser of the Queen Elizabeth Hospital in Birmingham is truly deserving of a Knighthood as he is the only surgeon of his calibre in this country who was able to perform this complex 14 hour re-do operation with such outstanding odds of survival - with no complications. During the operation, as a matter of course, he also transplanted an artery into my husband’s dead kidney and even got that working again! Mr Bonser performed a miracle, in my opinion, and deserves some recognition for his superior talent because he equals the world expert, Dr Coselli in Houston, USA. It would be a tragedy if Mr Bonser was to leave our deeply-flawed NHS and seek recognition for his work in another country, which so many of our surgeons are doing.
Thank you for your time and I would appreciate your views on this letter please.
Yours sincerely
Jill Havern
A week or so later he received a letter from the hospital saying that a small bulge had been found at the bottom of his aorta but it was nothing to worry about.
Update: 21 April 2004
