The man who has minutes to live

[michele]

I have just finished watching a documentary about a guy who had an AVM

Basically a giant blood clot on his brain . I am writing this because I have just sat and sobbed throughout it . When this AVM popped up it just came over night his wife woke up to find him basically fitting lifeless in bed .

He was taken to hospital and released that day . He was sent for scans until 5 weeks later and then the family was told that he had an AVM and it was like having a gun to his head or a bomb that could go off at anytime.

 

This family struggled to find a surgeon who would do the operation as his originall doctors told him that they wouldnt do it . His wife trawled the net and found a doctor in the Bristol Hospital the crubh came when at 37 they got a letter from the PCT saying that they would not fund the operation.

 

Why have we got a post code NHS and why is it called an National HS when regional PCT make decisions on who gets what . This lottery is unfair this man had worked all his adult life and now he is told they wont pay but if he had a car accident up or down the country it would be taken for red that you would automatically be given life saving treatment .

 

Is it really the end ? No wonder people are angry this family had a whole year of fund raising events to get £70,000 for the op the operation was successful and he has his life back . How dare they say he wasn't worth it and the risk's far out weight the benefits . What do you all think .

lets hope it never happens that we may need something .

[davenewellhome]

Not having watched the programme it is difficult to comment, certainly on this particular case. Last year I bumped into (not literally) an old work colleague from the early 90s. I was shocked to see him hanging onto his wifes arm, wearing dark wrap round sunglasses (on a dull day) and using a white stick as he bumbled along (yes I do mean bumbled as I can't think of a more descriptive word for how he was moving along).

 

Turns out three years earlier he had a massive brain haemorage, completely out of the blue and (when I saw him) had an inoperable condition that left him ultra sensitive to light and having to be extremely careful about walking around as the slightest bump could cause another bleed and kill him!

 

D.

[michele]

I dont know what to think of it all I suppose its easy to rant & rave and put the world to right ...The money is going somewhere but where I think its an extremeley bad show when a guy who has worked all his life is told to basically die a young guy with kids & a wife turns out it was sucessful the operation.

 

8-)

[Tomo3090]

Michele, we watched it too. Ann was crying while I just got into rant mode! These faceless unaccountable inhuman money people have no thought for their fellow humans. To them the whole of the NHS is a maths problem, medical realities don't enter into their lives. Thy are only happy when they can show a set of numbers to their political masters that ensures they get on the next honours list.

 

For anyone who missed it the issue was that it wasn't a matter of the condition being "inoperable" or that he only had a couple of years of life left. This was a 38 year old guy with 3 kids and a wife who needed treatment. The condition only got as bad as it did because the PCT were refusing the initial operation and the delay was because his family were appealing the original decision not to operate because of money issues not medical ones.

 

How any politician who has anything to do with running this country and watched that can look in the mirror this morning and think they are in the least bit honourable or doing a good job is beyond me. They are quite happy to sanction the spending of countless billions on fighting an illegal war in Iraq, introducing I.D. cards, handing out millions in "golden handshakes" to failed banking executives and generally filling their own and their families pockets before they are found out. Meanwhile a guys family and friends have to go begging to put together the money to save his life. They're all a shower of ..... (deleted word rhymes with light!) >:-)

[ROON]

I can't post for long on this thread as it is something close to my heart. I never plan more than four weeks ahead, (as advised by my surgeon - not the same as the man on tv though) and I have lost a dozen close friends over the last 12 months. Six of them fought tooth and nail to be given a drug which NICE refused.... One of them sold her home and everything else to pay for the drug .... and she died leaving her husband and children with the debt which so went against what she wanted to do. The drug didn't work in her case or in the case of the other five. I have had to go to their funerals and feel so much anger. Would the drug have worked if they hadn't had to fight for two years for it? Did the added stress add to its failure? I don't know. But I do know that the media quoted financial figures making it look as though the NHS could not afford to give this drug to the 44,000 women diagnosed. In fact of this figure only 5% had the particular type of this disease that would respond to the drug, and of those many were too far into it anyway to be given it.

 

I hope not now to offend, but when Ihave to queue for an hour in the chemist for my own drugs because the methadone queue is so long, I feel anger again.

 

I am bubbly and hopefully hide my fear to my friends and family but the anger bursts out at times, so I apologise if it has done so here. The NHS use NICE as excuses not to give drugs and they use finance I have done Charitable work since I was 19 and even now raise thousands each year and do not therefore consider I am taking up all the resources of the NHS ... sorry I am starting to ramble.

 

Succintly, may I say I fully understand where you are all coming from and join your sentiments. Joy

[Minstrel]

I'm glad I didn't know about the programme 'cos I would have watched it. My daughter had an AVM at the age of 16. We all thought it was a very bad migraine.

 

To cut a long story short, she survived although half die within 24 hours. She had an operation to cure the problem (faulty blood vessels) and is well 20 years later, but it has had a profound effect on her as her memory is not so good and she can't take too much stress, and is permanently on anti depressants. But she has a great husband and is pretty happy.

 

 

[michele]

Joy,

i am so sorry for you dont worry about upsetting anyone would they worry about you ?

You have every right to be bloody angry and i agree standing with Metahdone takers perhaps you could have some of there money that they have all worked so hard for NOT and put in the pot !!