My 53-year-old husband, Alan, suffered a dissecting thoracic aneurysm in 1999 and during the operation, performed by pioneering heart surgeon Prof Stephen Westaby, he lost the use of a lung and a kidney. He was in hospital for more than three months and ‘died’ several times. He attended hospital regularly thereafter for further scans. In October 2002 he had his final scan and was expecting to be discharged.
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.
He was given a new appointment at Northampton General Hospital, for January 2003 where he was told by the consultant, Mr Ratliffe, that the aneurysm was now 7.5 cm and that because of the complications left by previous surgery, it was outside of his expertise. He was referred to Leicester Royal Infirmary urgently and immediately.
We saw Sir Professor Peter Bell, at LRI, in February and he explained to Alan the procedure he could do to repair the aneurysm. He felt there were a few options which wouldn’t involve re-opening the previous surgery site where his ribs are stapled together.
However, Alan started to suffer backache in March 2003 and I phoned an ambulance as I knew this to be an important symptom of an impending rupture and was not to be overlooked. He was admitted to Leicester Royal Infirmary and had a further scan (the results of which have never been disclosed to us).
He was seen by three consultants from the same department, each of them giving a different opinion. Professor Bell was away from the hospital at that time, but one of the consultants, Rob Sayers from Leicester's Glenfield Hospital, used his charming bedside manner to say to Alan, ‘You do know this aneurysm is going to kill you, don’t you?’
The second consultant told Alan that he could operate the following Monday but that the chance of survival was only 10% and if he did survive then he would be permanently paralysed from the chest down as the blood supply would have to be cut off from his spinal column. He felt that an operation would be far too risky and it would be better to be on blood pressure medication to reduce his BP to 120:70. He said that there wasn’t much left inside Alan’s aorta to attach a stent to as it was thrombosed and that the aneurysm extended into his legs. He said that with reduced BP then the walls of the aneurysm may also thrombose and become stonger.
The third consultant, Professor Manuel Galinanes from Leicester's Glenfield Hospital, told Alan that he could operate and use a stent to repair the aorta and that the chances of success would be 50%. Thirty minutes later, just after I went downstairs to fetch coffee, he returned to say that an error had been made and it couldn’t be done. He said he would come back to explain all this to me, but he never returned and we left the hospital, quite frankly, devastated.
Discharge letter - inoperable prognosis signed by Sir Professor Peter Bell, Head of Department
I remained in contact with Professor Bell via email for a few months after Alan left hospital as I had questions that I felt needed to be answered. He was very helpful and tried his best to answer them. He told me that Alan’s aneurysm, given its size, would be likely to rupture within a year or two. He also said that if Alan’s blood pressure remained low then there was a slight chance that the aneurysm may shrink but the only way to confirm that was for Alan to have another scan.
As you can imagine, both Alan and I were very frightened about what lay ahead. We have since been told by our general practitioner that when the hospital had written and informed us of this ‘small bulge’ it was in fact 6.1cm (aneurysms are normally considered for surgery at 5cm) and neither of us can understand why he wasn’t seen immediately, let alone why he had to wait a further three months to be seen, by which time it had grown to 7.5cm.
Alan felt his death was imminent. I suggested that he have another scan as that would be the only way of finding out for sure. He was very depressed and frightened and was very unsure about having another scan as he was living in hope that the aneurysm may shrink.
When Professor Bell told me that he was retiring I took to searching the internet for any information and started writing to vascular surgeons in America who, having read of our situation, insisted we find someone and get a second opinion as there are techniques which could be considered. One professor in the USA said that the whole aorta could be replaced or another technique could be employed where the aorta is enclosed by an external stent or graft (or whatever the term is). The general opinion of all the people I had written to was that something could be done to possibly save my husband.
Alan has been seen by one vascular surgeon and his opinion was that his aneurysm is inoperable. For us to get a second opinion our GP has to ask the NHS for permission and failing that, we have to find a lot of money for an operation. We simply can’t do it, even if we sell our house. In that respect, he is sentenced to death by the service that claims to look after us. Far better to get medical insurance, but he can’t get any now since he’s already had one aneurysm operation. We’re stuck; or, rather, he is.
We’re going through hell and time is running out fast for us. We seem to be pursuing options that have dead ends … and the worst thing is we know that there is someone who could save my husband. I’ve had plenty of emails from this site telling us of success stories. The technology is there. The expertise is there. We just can’t access it. He is on ‘death row’ but without having committed any crime. We’ve used up our one and only chance of having him operated on because he was seen by someone who didn’t have the expertise or courage to try. And that’s his fate. It’s not right. And if he dies because no one tried to save him I will take this to the Government and make them answer all my questions. He’s only 53 and has got plenty of life left in him, except for this darn aneurysm.
God bless you all and God bless America … because it seems America is the place to be.
I have had hundreds of emails in response to my narrative and some extremely helpful suggestions and I am writing to thank each of you for all your help.
In particular, I would like to thank Sharon Dudgeon (author of ‘Merry Christmas to Me’) for all her help in getting my husband recommended to her surgeon in Chicago, Dr Jeevandam; she seems to be remarkably interested in our situation. Sharon believes that God is on our side and I can only agree with her.
My husband shouldn’t have survived his first ruptured aneurysm and, according to medical opinion, shouldn’t even be here now – but he is very well and optimistic (especially since having his hopes raised by the people on this site) and, although time is running out for us, we are keeping our fingers crossed now that Dr Jeevanandam in Chicago can save his life in the nick of time. I hope my next update will be telling you that Alan has had his operation and that all is well.
Thank you all very much for your input and God bless you all.
Alan has now had a new MRI scan done and we have sent copies to The Netherlands (Professor Michael Jacobs, associated with Dr Joseph Coselli in Houston) and to University Hospital Chicago (Dr Jeevanandam). Professor Jacobs said the scans didn’t give him enough information and that other scans and information were necessary. He did say, though, that he has operated on patients from the UK and that the NHS had paid for it. Hmmm … really?
Dr Jeevanandam, however, informed us that Alan needed to have his previous surgery site repaired as the aorta was completely blocked (can you believe that?) and that his aneurysm could be repaired with an 80% chance of success. Just like that!
It would seem that for the past four years, Alan has survived with not only one kidney and one lung, but with a completely blocked aorta and the blood has been flowing through the original dissection! It seems to me he’s a walking miracle and deserves the chance of life – and who doesn’t? – except our NHS was quite prepared to send this 53-year-old man home to die. It also seems to me that the previous surgery wasn’t carried out correctly, which resulted in his subsequent aneurysm … I assume the strain of blood having to flow through the original dissection had to give way somewhere.
We are now in the process of trying to negotiate finances so that Alan can have this life-saving operation. We haven’t got any medical insurance and only limited savings, but at least we now know that he can be saved.
Time is of the essence and we need to do something fast. We are pursuing our National Health Service to help fund him, but we realise it could take many months to get a reaction from them.
If Alan should die during this process, then I am determined to carry on this sorry matter now because it may be that many people in this country could be in the same situation. Please keep your fingers crossed for us that we can do something in the nick of time.
Alan has now had the decision from the NHS about funding this life-saving operation. The decision is a resounding NO. They won’t do it. Alan’s life has got a price on it and he’s too expensive to save.
If there is a lesson to be learned here by anyone in the UK who ever reads the narratives on this site it’s to get some private medical insurance that is underwritten to include surgery outside of this pitiful country.
Update: 21 April 2004 After the NHS decision to decline Alan’s application for overseas treatment, I put in a very strong appeal. I had found a policy document issuing guidelines for treatment outside of the UK and felt he fitted the criteria. This was backed up by a case I found on the internet from a solicitor in London who had won a case for Yvonne Watts, a woman who had treatment in Europe for a hip replacement operation, due to undue delay on the waiting list here. This has effectively opened the doors for other patients now, although it is not well known (of course).
I pursued Alan's appeal along these lines – that if a patient can be reimbursed fully by the NHS in Europe then why couldn’t it apply to other parts of the world?
To cut a long story short, we had a phone call this morning saying that the appeal has been upheld and that funding will be made available for the USA.
Hoooooooooorah! America, here we come! We are now in correspondence with Richard Stein of Leigh, Day & Co., the solicitor who won the case for the woman with the hip problems to ensure that law protects patients to have the right to have surgery anywhere in the world if the NHS cannot provide the service.
We want to make it known that if anyone else out there reading this narrative is in the same situation as us (God forbid) that they can get in touch with us so we can help them achieve the same results.
IT CAN BE DONE!
My next update will surely be that Alan has had his operation and has returned to Merry Old England so that we can get on with our lives. This has been the most traumatic year for us, almost resulting in the breakdown of our ten-month-old marriage.
We have gone from newly married to ‘Death Row’. But now we have a chance to live. We’re not out of the woods yet; we still have to get to Chicago – and the biggest hurdle (the operation) is still ahead of us. But we feel we have achieved so much that we want to share it all and help others.
Thank you so much, Aneurysm Family. Without this Family Alan would die; of that I can be certain.
We have now had the letter from the NHS regarding Alan’s case for funding. The letter is different to the telephone conversation last Tuesday. In the conversation Alan was told that the appeal was upheld and that funding would be available for the USA. The letter now says that the appeal is suspended pending three further opinions on whether surgery can be done in this country. Those opinions will be in Leicester, Birmingham and Oxford.
Alan has already been seen by the top man at Leicester! – Professor Sir Peter Bell, who is now retired – so presumably we’re going to meet up again with one of his underlings … the one who said ‘You do know this aneurysm is going to kill you, don’t you?’
We have gone full circle and are now being sent back to the beginning! Well, heck, it’s only taken 13 months to do that ... so what’s another few months for a dying man? Clearly this is going to take even more time now and cause even more undue delay. I can only assume that the NHS are stalling for time because they know Alan will die soon without surgery and it will be an end to their problems. That’s what they think … because as far as I’m concerned it’s only the BEGINNING of their problems. If it’s the last thing I do in my life I’m going to win this. Yesterday I decided it was high time to get the national press involved and get this sorry tale out in the open. The Daily Mirror, and our local newspaper, will be covering our story in the next few days. We have also written a strong letter telling the NHS why we don’t want these opinions (especially as it’s not even a requirement in their own Policy Document!) and we’ve also asked our lawyer and MP Tim Boswell to intervene, both of whom are firmly on our side.
Hopefully, this will all serve to speed up the process so that we can go to Chicago without much more delay but the clock isn’t going to stop ticking … So much for our 11th-hour NHS ‘Death Row’ reprieve.
After Alan was told by the NHS that he was to go back to Leicester for another opinion, I decided to write to his former consultant, Professor Sir Peter Bell (somewhere along the line this chap got a knighthood), via the British Vascular Foundation. I asked him straight out why he didn’t tell Alan last year that NHS Policy and Procedure existed to refer him to someone who could do the surgery he needs – overseas if necessary. His reply? ‘No one can put a price on someone’s life but having surgery in the USA would be extremely expensive unless you have private medical insurance’ In just one sentence he contradicted himself without so much as a comma or a full stop.
In other words you CAN put a price on someone’s life and Alan’s surgery was too expensive. I then asked him how he knew Alan didn’t have private medical insurance. No reply to that one. Professor Bell then went on to say that there were surgeons in the UK and Europe who were just as capable as those in the USA. Oh yeah? Name one. Bless his cotton pickin’ heart (you see, we’re practising our American accents), he did more than name just one … he named five! He also laid down the criteria for Alan’s surgery by saying that the surgeon chosen would need to have success of re-do operations. link
Armed with my trusty laptop I went straight onto the internet and looked up the names. The first one, in Birmingham, publishes stuff in the ‘PubMed’ about ‘Voices from the Void’. The second one was some vet in Norway and his publications in ‘PubMed’ include things like gaseous exchanges in pigs and dogs. Oh, and he also researches body piercings and tattoos. Mustn’t forget that. Now call me old-fashioned (or maybe Professor Bell just has a wicked sense of humour), but I couldn’t find any relevance whatsoever to re-do thoraco-abdominal aneurysm operations. I gave up researching the others and went and poured myself a stiff lemonade before I lost the will to live and decided to go jump off something high.
As if that wasn’t enough, Professor Bell then went on to say that he never said that Alan’s operative risk last year was 90% failure – or 100% certainty of paralysis and renal failure if he did survive. He believed it then, and he believes it now, that he could have done the surgery with an 80% success rate. Although Professor Bell signed Alan’s Discharge Summary, he said it was actually Professor Galinanes who made the diagnosis as he was away from the hospital at the time. Surely, as Head of Department, he wouldn’t be trying to blame someone else? Whoops! Was that the sound of kicking yourself in the butt I just heard, Sir Peter? Would you like a spade to get yourself out of the hole you’ve just dug yourself into?
Without further ado, I then wrote back and asked him these questions: If you didn’t agree with the diagnosis why did you, as Head of Department, sign the Discharge Summary that stated Alan was inoperable and terminal?
If you thought the operative risk was only 20% why didn’t you offer Alan an operation at the time and why have you left it 14 months to tell us (bearing in mind you only gave him 1 or 2 years at best to live)?
Why did you write and tell Alan's GP that the operation he needed could not be done?
Why did you support his application for Disability Living Allowance under the Special Rules (terminal illness)?
It’s at this point that Professor Sir Peter Bell has declined to comment further. It has now become clear to us that Professor Bell decided Alan’s life wasn’t worth saving. He didn’t offer him a life-saving operation, neither did he use NHS guidelines to refer him elsewhere. Our Government, seemingly, are on a mission to reduce waiting lists and cut spending and what better way to achieve it than to send people home to die? That knowledge is far worse to accept than the original diagnosis because everyone has to die – but to know that someone is playing God and deciding when their time is up is beyond belief. As I pointed out to Professor Bell, Dr Harold Shipman was jailed for causing unnecessary loss of life. Fact. Other than the method, what’s the difference? Unless someone can convince me otherwise then that is my opinion.
We have made a formal complaint to the hospital and are now pursuing clinical negligence through our solicitor. I’m sure Alan isn’t the only person in this country who is on the NHS ‘Death Row’ so why shouldn’t everyone know? How many people in this country have been told they are inoperable/terminal and they have accepted it, as Alan did? How many people have already died because their consultants either misdiagnosed or failed to refer them to someone with more expertise and only 14 months later care to tell them about it?
How can all this be right? The simple answer is: IT’S NOT.
This, of course, is not getting Alan any closer to having his life-saving operation … we continue to wait. His wait is now prolonged because the consultant in Leicester sent us an email today to say he’s cancelling Alan’s appointment next week and that the NHS must now refer him to someone else in this country because he also doesn’t have the necessary expertise. He is recommending to the NHS that Alan be referred to – yep, you’ve guessed it – the chap in Birmingham who writes of ‘Voices in the Void’.
The surgeon in Birmingham, Mr Bonser, turned out not to be the ‘Voices in the Void’ man after all – we were given the wrong spelling and were researching the wrong person.
Alan went to see Mr Bonser at The Priory Hospital in Birmingham and was admitted on a private basis (paid for by the PCT) and all kinds of tests were done to determine his exact condition, which is something else Professor Bell failed to do. As it turns out, his one lung, one kidney and heart can all withstand surgery. The results of the tests were explained to us and Mr Bonser said he can do the surgery with the same operative risks as those given to us by surgeons in the USA – an 80% chance of success. He said he can do the surgery within one month and it will take two days to complete the operation because of the complexity involved.
You would expect us to be totally overjoyed and jumping up and down with relief and happiness, wouldn’t you? Of course we are both happy that it has been established that Alan is not inoperable after all, but the sadness, trauma and despair we have endured over the past 15 months to get to this stage far outweighs any other emotion we are capable of feeling right now. We have literally been destroyed by it all. We are both mentally and physically exhausted by all the effort we’ve had to put in. It’s been a long, hard slog which has resulted in the breakdown of our marriage and our individual livelihoods. We’ve been through four months of counselling to try to help support each other but the strain has been too much and we are living apart, although remain in contact on a daily basis. We are still working together to get this awful mess resolved.
And now for the bad news … today we have been told that the PCT have only agreed to a private opinion, not private surgical treatment. So now we have a ‘yes they can do the surgery but no you can’t have it’ scenario. The PCT want the NHS to do the surgery which means that Alan will have to join a 6-month waiting list (to be operated on by the same surgeon who can do it privately) by which time he may well be dead. Problem solved, money saved, waiting list shortened. What a clever way to get out of paying for something that should have been done 15 months ago. At least the PCT will be seen to have done everything they possibly could and how ‘terribly unfortunate’ it would be if Alan died in the process.
What a load of baloney this is.
The next stage is to get our solicitor to put pressure on the PCT to get this operation over and done with. After that, we will be pursuing a claim for medical negligence on the grounds that Professor Bell declared Alan inoperable even though he’s obviously not. Professor Bell knew of Mr Bonser last year – he’s been working in Birmingham for the past year, so it’s not like he’s just appeared on the scene – but he failed to refer Alan to him until we put pressure on him. Alan could have had this operation last year and we could have been saved from all this misery. To my mind, what has happened is nothing short of criminal and I still maintain that there is an NHS ‘Death Row’ system in operation in this country. How else can this be explained? There must be other people in the same situation who have been diagnosed as inoperable, who are not, and to those people I would advise you to first get a further opinion from the USA (because that’s where the best surgeons are) sending scans etc if necessary, and then research the UK to see if anyone can offer EQUAL treatment. If not, then the NHS CAN pay for private treatment and they CAN refer you overseas if suitable treatment is not available in this country. PubMed is where you will find information about the expertise of any surgeon.
I think there will only be one more update now – and that will be to tell you when Alan has had his operation and what the outcome is (unless he dies waiting, of course).
(Coincidence, n. – a remarkable concurrence of events or circumstances without apparent causal connection.)
I first started writing this narrative on 23 January 2004 which, coincidentally, was the 7th anniversary of the death of my father – who, coincidentally, died of a ruptured aneurysm. I didn’t have a clue what an aneurysm was at the time, but I think I have a better idea now. I also didn’t have a clue that an aneurysm support group existed; I was guided here, and certainly didn’t go looking for it.
Last Monday was when we went to see Mr Bonser – coincidentally, it was the final week of our first year of marriage – and that week ended with the wonderful news that Mr Bonser could save Alan with the same operative risks as those given by the Americans.
Monday 14th June, just gone, was our first wedding anniversary and, coincidentally, the excellent news came through that the PCT have finally agreed to pay for Alan’s operation privately, probably aided by a few strong threats from our solicitor, Richard Stein of Leigh, Day and Co. in London (just in case anyone needs a lawyer of this calibre). Arrangements are taking place to fit Alan in as soon as possible, probably within a month.
When Alan and I met I was, coincidentally, living in Birmingham and, having left our marital home (because we were doing nothing much other than taking all this mess out on each other), I am once again living in Birmingham. Alan is going to have his operation in Birmingham and we are going to buy a house here so I can take care of him once he comes out of hospital. I think we have, indeed, been full circle. And I still believe God has helped us through this. The fact that we won our battle on our first anniversary is surely an omen, if not a coincidence – out with the Old and in with the New?
We are thrilled to have won this appalling and destructive battle but we both know the biggest hurdle is still in front of us. Alan now has a month to try to get himself in the right frame of mind to undergo this massive operation which will take two days. With all the horror he’s had to endure in the past 15 months, it’s not going to be easy, but I am trying my best to help him stay sane.
To all of you who have supported us through this, please can I ask that you pray for Alan now … we have opened the doors for anyone else in this horrendous situation also to be saved and I hope I have given some useful information out on how to go about getting treatment and funding, either in the UK or overseas.
My dearest confidante on this site, Sharon Dudgeon, is the author of ‘Merry Christmas to Me’ … All I can say, coincidentally, is Happy New Year to us!
It has now been more than four weeks since Alan saw Mr Bonser and was told that he could do the operation, on a private basis, within a month, with the same operative risks as those given by surgeons in the USA. Mr Bonser indicated that he wants to do Alan’s surgery at the Queen Elizabeth NHS hospital in Birmingham rather than The Priory BUPA hospital because there are better facilities and equipment to carry out such a massive two-day operation.
In that time we have been waiting for the letter to arrive with a date for that operation – indeed, Alan should be in hospital by now, having that operation. As nothing seemed to be forthcoming I phoned Mr Bonser’s private secretary and she said she’s heard nothing from the PCT either in writing or by telephone (here we go again).
I then phoned Mr Bonser’s NHS secretary and she said she’d received a letter some weeks ago from the PCT asking three things:
1. The estimated time Alan would have to wait for an operation on Mr Bonser’s NHS list, and how long on his private list.
2. The relative cost for the proposed intervention as a private and NHS patient.
3. Whether or not the risks to Alan’s health would be increased by a longer waiting time.
In my opinion, there was no intention on the part of the PCT to write to Mr Bonser’s private secretary to obtain costings for any private operation so they could compare. Nor was there any intention to compare waiting lists. The intention, I believe, was that they wanted Alan to be put on the NHS waiting list, despite previous promises, and they wanted to find out if his condition could tolerate an additional four months’ waiting time. Sneaky, but clever.
Given that Alan has already had to wait 16 months for any kind of operation, and in that time his aneurysm has grown from a dangerously large 6.1 cm to an even more dangerously large 8 cm, we both found it hard to believe that these questions were being asked – especially as the PCT had agreed, in writing, weeks ago to pay for the tests and treatment privately. As usual they are now trying to backtrack to save some money by trying to find out if Alan could wait another 4½ months by being put on the NHS waiting list.
Letters of a less than polite nature were written at speed, by my own fair hand, to the PCT, which involved threats of surgical removal of valuable body parts with a blunt, rusted instrument – actually, that’s not true; but that’s what I wanted to say.
As I said many months ago, I am of the opinion that the PCT are stalling for time in the hope that Alan will die – it seems they are trying to find any excuse not to pay for his operation. They have proved me right time and time again – building up our hopes and shattering them – by telling us things on the telephone that don’t match the things they are putting in writing, that Alan would have the best treatment available in the world if Mr Bonser couldn’t do the operation, and it was agreed that Dr Coselli in Houston was the world expert for the kind of re-do operation Alan needs. Now they are querying the cost of the surgery – a query that has, so far, taken more than four extra weeks. Any surgery in this country can only be less expensive than surgery in Houston.
Having received my letter, prior to a meeting to discuss Alan’s case, the result is that the PCT have once again agreed to pay for the operation on a private basis.
It’s only taken them 4½ weeks to re-make their original promise. My last update suggested that we were celebrating, but now we can’t raise any enthusiasm whatsoever because we await the next downfall with bated breath.
In the meantime, my mother also had to attend the Queen Elizabeth hospital for tests to determine her suitability for surgery to repair a leaking heart valve and (can you believe) a thoracic aneurysm was also found on her aortic arch. Her doctor immediately emailed the NHS to put the wheels in motion for surgery. MRI scans are being arranged and she’s been put on the NHS waiting list already – all that was done on the same day whilst she was still in the hospital. The results of the scan will determine her place on the list.
Now, call me quaint, but am I the only one around here to think that my mother will get her operation before Alan? She’s been waiting for six days so far and has been on the NHS waiting list since day one. Alan has been waiting for 16 months and isn’t on any list. Whilst I am devastated to learn that my mother also has an aneurysm, I couldn’t wish for her to be in better hands than – yep, you’ve guessed it – Mr Bonser!
Dear Mr Stein, Mr Bonser, Professor Jeevanandam, Dr Ketchin, Mr Boswell, Professor Maples, Sharon, Ms Lody and Amy,
Alan came out of surgery around 10 p.m. last night after approximately 14 hours in theatre – which I thought was quite remarkable because it was suggested it could take two days. He’s now in Intensive Care and it will take two or three days to know if there are any complications such as paralysis or kidney failure. Mr Bonser told me that all went according to plan. There has been no phone call during the night, which means Alan has survived his first night. He is a fighter and deserved this chance to live.
It has been the most traumatic 16-month ordeal to secure this operation to save Alan’s life. He is asleep now and can finally rest and try to get well again. I am totally drained, physically, mentally and emotionally, but all I can think of now is: thank God he hasn’t got an aneurysm any more and is still alive. Thank God for Mr Bonser.
I have seen two completely different sides to aneurysms now – my father died suddenly of a ruptured aneurysm seven years ago not even knowing it was there – a terrible death. Alan and I have had to fight every step of the way to have his aneurysm repaired – a fight that has destroyed us both and shouldn’t even have been necessary. He should have been referred to Mr Bonser 16 months ago. And now there is my mother who knows she has an aneurysm but won’t have to fight for her operation as we did with Alan, because she’s already under the care of Mr Bonser. She knew of her aneurysm just three weeks ago and is already scheduled to begin treatment starting next Tuesday. The difference is so clear to see. Why wasn’t Alan treated like this?
I hope no one ever has to go through the kind of trauma we’ve had to endure to try to save Alan. The hardest part for him is still to come – he has to try to mend from this massive surgery – but he is very strong willed and pretty healthy and I am certain we have God on our side. And Mr Bonser was totally confident about his ability to perform this operation, which put Alan in the right frame of mind to undergo surgery with him.
Once Alan is physically mended he will be left with the most terrible emotional scars as he asks himself how this was allowed to happen. Why did his consultant at the LRI send him home to die 16 months ago and ruin both our lives? Why did we have to fight like this? He could so easily have died. Why did I have to seek help from the USA because no one in this country could be bothered to help us? Had it not been for the wonderful Professor Jeevanandam in Chicago, none of this would have been possible. He saved Alan long before Mr Bonser did by giving him the most important ingredient to see this through to the end – Hope. He gave Alan the will to live.
Had it also not been for the invaluable Aneurysm Support Site hosted by Professor Maples at the University of West Georgia then none of this would have been possible either.
Something needs to be done to ensure this never happens to anyone else. It is impossible to describe the despair we have endured for the past 16 months.
Sincerely, I thank you all for your part in helping to save Alan.
Alan has been having seizures since he came out of his 14-hour surgery. He was taken for an emergency scan last night and I have now been told to prepare for the worst scenario – that he may not wake up at all. And if he does then it’s not known how much damage he may have sustained, but it would seem the damage affects his whole brain and not just part of it.
This is my worst nightmare. Yet I thought I’d already had that.
Alan is starting to wake up and he’s moving his arms, legs and eyes. He knew I was there; he really tried his best to open his eyes. I told him England had won the cricket and he raised his eyebrows! He knew I was fibbing! I told him he wasn’t paralysed and that he was going to be OK, that he’d made it through the surgery, and he really seemed to know what I was saying to him.
His brain tests show that things are OK, although they won’t know for sure until he’s fully awake, but he’s definitely aware of what’s going on. He’s stopped having seizures. He can’t squeeze the doctor’s hand when asked yet, but he can open his eyes when asked. I am totally bewildered by the turnaround. He’s not paralysed and his kidneys are doing well. He’s also doing some breathing for himself. In fact, he seems to be coming round very well. I can’t believe it!
I was told a couple of days ago to prepare for the worst and now it seems he’s going to be OK! Surely he couldn’t have had a stroke after all; he wouldn’t have recovered this quickly, would he?
This has got to be a miracle!
He wasn’t inoperable after all!
Dare I believe he’s going to survive this? He will be fully awake in a day or two.
God bless you all for staying with us through this.
Alan is continuing to make excellent progress. For most of last week he was terribly confused and it was thought he’d sustained brain damage due to being on the heart/lung bypass machine.
Today was a huge turning point – he’s no longer confused and has almost returned to his normal self. From what I’ve been told there is no damage to his brain – unless he doesn’t get the use of his right arm and leg back totally, but even they are making vast improvements every day and very soon he will be back on his feet and off on walkabouts around the hospital corridors! His memory is improving and he is becoming more alert every day.
I just know he is going to be fine; he’s recovering pretty quickly now. At this rate, he will be out of hospital in a few weeks’ time and we will be able to get on with our lives, although I’m sure he will be ‘tied’ to the hospital for a while afterwards. A small price to pay for Mr Bonser giving him his life back.
All of this is beyond our wildest dreams. When he comes out of hospital he won’t have the threat of this aneurysm hanging over him – I can’t imagine how that will make him feel – FREE I suspect! I know how it makes me feel – totally relieved! Mr Bonser said that he’s fixed Alan’s aorta and if anything else should happen then he can fix it internally without having to open him up again.
He also transplanted a new artery into Alan’s kidney to make it work better – he hasn’t even been on dialysis! Once he’s recovered he will be in better shape than he was four years ago. He has certainly come through the worst of it now and the light at the end of the tunnel is shining for us.
Mr Bonser came to see Alan tonight and is very pleased with his progress. I took the opportunity to thank him in person for saving my husband’s life … to which he replied, ‘It’s my pleasure.’
It would seem this horror story is going to have a happy ending! Thank you all for staying with us through this and making your prayers heard.
It would seem that Alan may be coming home at the end of this week – he’s doing incredibly well considering the size of the operation, and is now being weaned off all the drugs.
Mr Bonser transplanted a new artery into Alan’s dead kidney and has even got that working again! He also fixed his aorta so that if he does get another aneurysm, in the gap between the old repair and the new repair, it can be fixed through keyhole surgery through the groin and he won’t have to be opened up again.
Alan hasn’t had any of the complications that were suggested (paralysis, kidney failure etc.). He had some seizures, but no permanent damage has happened. He will be in better shape than he was four years ago after his first surgery!
I hope that if anyone else approaches you for help in the UK that you will recommend Mr Bonser without any hesitation – he is quite a remarkable surgeon and Alan owes his life to him. He is just as good as those in the USA – in fact, he’s the only surgeon in this country who can do this kind of re-do operation.
It is wonderful that I have my husband back in full health and we can get on with our lives.
Please accept my heartfelt thanks to you all for helping us through this very traumatic experience. It has been a team effort that has succeeded.
Alan is coming out of hospital today, exactly four weeks after his operation!
I don’t think it’s sunk in with either of us yet that this is all over. We’ve had a good talk over the past two days about what it’s all meant to us and we’ve both reached the same conclusion: that we just don’t want to fight this any more. We want to just forget about it and enjoy a simple life in our new house with our kittens, Posh and Beckham. To carry on fighting this and get it into court will just mean more stress and even then the outcome may not be what we want – so what’s the point?
This can’t be allowed to be about money, it’s about being able to live a simple life free of this nightmare. To be able to wake up in the morning and enjoy the day rather than sit at our computers researching and writing letters. What an horrendous 17 months it’s been. But it’s over now. We don’t have to do that any more. To fight this and get it into court will be about money and that’s not right. Money can’t put right what’s happened to us. Mr Bonser put right what happened. He saved Alan … and in the process he’s saved me!
I was dreading going back to that sort of life – just picking up the pieces where we left off, and so was Alan. Alan says he just wants to get fit enough now to be able to cut the lawn and go on holiday. Our last holiday in Greece was very sad because Alan thought it would be his last – he used to go and sit on the beach early in the morning and take in the view and think he would never see it all again, so I’ve suggested we go back to the same place, when he’s fit, and put those bad memories to rest and replace them with new, happy ones.
His attitude seems to have changed – he’s lost all the anger he’s carried with him for the past 17 months and is just relieved to be alive and not having to worry if today is his last day. This is exactly what I hoped would happen to him. That he would mellow out and just be grateful for his life and put things into perspective.
He is coming home today and I hope this will be the first day of the rest of our lives – 20th August 2004. We just want to be able to put the bad times behind us and enjoy some simple good times – our house used to be full of fun and laughter before all this started, and it’s high time to get that back.
I don’t think many newly married couples have had to face this sort of start to married life – but we’ve survived it and I hope it will bring us closer together.
This Christmas, when Alan will be fully recovered, we intend to have one heck of a celebration!
Once again, thank you all for helping to save my husband’s life. We will never forget you! Now, if you’ll excuse me, I have to get to the hospital to bring my husband home!
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.