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Croydon, UK, November 2000

A Carer's Perspective

Maureen Barraclough

Six years ago, with the help of our current GP, who though readily admitting the subject was new to him, tried his best to assist by changing Michael gradually over onto diazepam. From day one, terrible symptoms appeared and when he eventually saw Professor Lader, he was told he was one of a very few people who suffered a cross-over intolerance from Ativan to Valium.

For those six years, Michael has been in constant daily pain. Every nerve ending and every muscle in his body is affected, his liver is affected, he has extreme photophobia and a pain in his eyes resembling being stabbed with a screwdriver. [transcript missing] tests were all negative.

His bowels and intestines are damaged and so inflamed as to cause regular, horrific abdominal cramps. I have had many times to perform manual evacuation on his bowels to alleviate constipation.

The nerve endings in his legs are now so bad he can hardly walk. It's now over 12 months since he washed his legs as even sponging them causes unbearable pain. His feet are swollen up like balloons.

He has to eat in a chair with his plate propped up to chest height as eating at a table causes vertigo. He suffers 69 known side effects, 40 of which he can have in a day, 6 at any one time. Some days he shakes so much on waking I have to hold his spoon to enable him to eat his cereal.

Can you believe that such a situation is allowed to exist? I, as full time carer have also had my life turned upside down. Michael cannot undertake any normal household task involving standing, walking or reaching. He has to be assisted with dressing and I have to fasten his shoes. Whilst I am here at the conference he cannot go to bed until I return and will sit and sleep in a chair. His meals will consist of sandwiches because he cannot stand long enough to cook anything - the pain around his knees and thighs from muscle wastage is excruciating.

We are both victims, not only of evil and amoral drug companies, but also of successive and corrupt governments. As for Mr Justice Kennedy, I suggest he pays us a home visit and see for himself exactly what British Justice means. He has lost his career and earnings and has no quality of life - he is now 56. Because he can only reduce by a quarter of a milligram, that is one eighth of a tablet every three months, he will be almost 70 by the time he finishes.

Mention has been made of the setting up of centres which people can attend, presuming they can walk. Such places need funding and would themselves be dependent upon the whim of the political party in power. Could such a centre stop the psychological trauma suffered by Michael after a dream of where he is 35 and fit and well and on waking realizes that his actual life is a real nightmare?

We would like compensation for a life lost. Michael just wants to live a little before he dies and money would enable him to employ the care he would require to give him the holiday he has not had for 22 years. Any compensation should come out of the manufacturer's vast profits, not from the Government using tax payer's money, thus putting the public against us - compensation for so much trivia having made it a dirty word.

I have in my hand a patient information sheet for diazepam, which conveniently appeared with new packaging in June 1997. Bearing in mind that Ativan is 10 times stronger than diazepam, had this information not been withheld, as we now know it was, had Michael not just been given tablets in a glass bottle with no mention of contra-indications, he would have known why he was falling asleep suddenly and without warning at his desk. Had the receptors in his brain by now been already damaged? If his thought processes had not been affected he would not have been afraid to approach his woefully inadequate GP, then I would not be here and he would not have had his life destroyed.

Had these drug manufacturers, for example been producers of electrical goods, which were as faulty and caused half as much damage to people as these tablets have they would have been forced to pay damages and probably put out of business.

We now have this vast amount of evidence of damage caused to people's lives, so how are they getting away with it?

[I know Phil Woolas may not like this!] Will the following quotes shed any light on it?

  • Dateline, London: BBC 22nd of May a reporter stated that: "no one takes much notice of Government Select Committees."

  • Teletext news, 20th July, a Foreign Office Minister, Peter Haines insisted that: "Britain is a world leader on promoting human rights" - so where are Michael's?

  • Robin Cook, 25th September, speaking about a European leader: "Be honest with your people, don't cheat them."

  • How strange that Paul Boateng, when in opposition, advocated benzodiazepine victims having access through the courts to seek damages against the pharmaceutical companies concerned. Once in Government he conveniently changed his mind and then in the run up to the Mayor of London elections had the audacity to accuse Ken Livingstone of going back on his word.

  • Teletext News, 29th September: "In the last three years miners have been paid one hundred million pounds in compensation for vibration white finger. Does this prevent their going on holiday, getting bathed or washed, eating their meals at a table, walking, reading or having a social life? Did any of them lose their career at 35? I think not. Michael cannot do any of these things he has lost his quality of life and will remain so until 70, if he lives so long."

Why have others been so successful in their claims? They are backed by strong unions, they work together not as separate entities, not running little individual groups with no cohesive whole, but working as a team.

The time for little meetings in widely dispersed groups has long gone. I ask you to put aside geographical and political differences and unite to become a force to be reckoned with. We have to consider something high profile, such as protest en masse to the high courts of justice.

If each sufferer could get just one person to join and thus create a protest march we could become a voice to be heard and our demands for justice could not so easily be swept aside as so many letters have been. The Countryside Alliance have managed it, the gays have managed it, we can do it. Weak or able-bodied we must start here and now to create much more noise and nuisance on behalf of those who have been so damaged.

To go on without more notice forced upon government and drug companies means we shall achieve nothing. I for one do not intend to sit back quietly and accept what Wyeth and Roche have inflicted upon Michael. We have to become the attackers instead of the attacked. Thank you.

© Maureen Barraclough, November 1st 2000. Reproduced with kind permission. [Apologies for missed items due to technical problems.]

Biographical Note

Maureen is a former nurse, born in York, and a Freeman of the City of York and unofficial carer for her partner, Michael.

She describes herself as a forthright Yorkshire woman who calls a spade a spade, and does not care how many official toes she has to tread on in her fight to gain justice for Michael.

When she met Michael in 1987, he had already lost his career and was prematurely retired at 35, after suffering what they now know to have been an Ativan-induced epileptic fit whilst travelling by train, banging his head continuously on tubular steel bars and consequently suffering severe head injury and memory damage.

Maureen has cared for her mother during her decline from several strokes, but has never witnessed such terrible daily agonies as those caused by Michael's many side effects (69 in total) from his prescribed drugs, in particular the loss of ability to walk due to Ativan and intolerance of the cross-over to Valium.

Maureen feels the judicial system has failed her and Michael - available only to the wealthy and criminals in prison. She feels Michael's human rights have been denied and violated and feels pressure should be brought to bear upon the drug manufacturers by the Government for compensation for a life wrecked and left in ruins.

She strongly believes that before Britain interferes in other countries' misadventures it should put its own house in order.

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