Update: 8 June 2004
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).