Court ruling on Hep C inquiry - time for Government to admit responsibility and do the right thing for victims.

For years, local Health Trusts, the NHS, civil servants, local authorities, and Government Ministers have done their utmost to prevent an inquiry into the use of contaminated blood products on the NHS which have caused suffering & death to patients who received blood transfusions of infected blood products - which someone knew about and did nothing about.

Rather than admit responsibility, successive administrations have played with people's lives, destroyed medical files & records, interfered in people's access to justice with willing help from the legal profession itself, and prevaricated victims attempts to get an inquiry and answers into what happened to them at the hands of the health service - all because the same Health Trusts, NHS staff, civil servants, local authorities, and Government Ministers wont admit they were at the very least, negligent, and at the most, knew of events as they occurred and did nothing about it.

However, after long campaigns by victims families, Lord Mackay has overturned a dictatorial 2006 ruling by the Lord Advocate denying Fatal Accident Inquiries into the deaths of two victims of the contaminated blood products scandal, declaring the Lord Advocate, Elish Angiolini's ruling breached the Human Rights of the victims.

However good the news is there will now be inquiries into the deaths, the fact remains that inquiries into events in Scotland have a less than honest record when it comes to getting to the facts - with remits being changed, argued over just in case some people or vested interests may be threatened with exposure .. etc ..

Isn't it time for a touch of honesty now for all the victims of the contaminated blood products scandal ?

A touch of honesty, in the form of an admission of guilt, negligence, and a fast track system to compensate the victims and provide the answers which people should have been given many years ago.

Such a move isn't impossible, as the Japanese Government have proved, with, after long campaigns also in Japan over similar cases where people have fell ill or died through the use of contaminated blood products, the Government of Prime Minister Fukuda has decided to recognise its responsibility in the Hepatitis C transmission due to the use of the blood products, and offer apologies & compensation to those affected.

So why is this not possible in Scotland ? Indeed, why is this attitude not possible in the UK ?

Why must victims be subject to delays, obstruction, prevarication, and be sent down the route of inquiry after inquiry, when we all know from experience, much of what will be revealed will be decided beforehand, just in case a few heads must role for the loss of life which could have been prevented ...

Such a policy should be applied to all areas of injustice, easy to do, cheaper, shouldn't involve the lawyers raking in gigantic feels like the miners compensation scandal - where the lawyers got more than the victims ... and well, it would add a touch of honesty to Government never seen before ...

Are we up for it in Scotland ? Does our Government have that 'touch of honesty' to go the extra mile and resolve these issues as they should be resolved ?

Here's how the Japanese have reacted to the situation - after campaigns from victims to secure inquiries and a resolution of their suffering, with a report from "Hepatitis Central.com" :

Japan Offers Aid to Recipients of HCV Tainted Blood

Lawmakers in Japan have publicly recognized the government's responsibility in Hepatitis C transmission from tainted blood products. While a recently passed bill will offer compensation to those affected, it will be interesting to see if other administrations follow suit.

Hepatitis C bill offering aid, apology clears Diet

Compiled from staff, Kyodo reports

The House of Councilors voted unanimously Friday to enact a law to give uniform relief to people who contracted hepatitis C from tainted blood products.

With the passage of the hepatitis C bill, about 1,000 people, including the 207 hepatitis C plaintiffs who sued the government and drugmakers, will receive an apology and compensation from the government.

In a statement issued following the law's enactment, Prime Minister Yasuo Fukuda said: "We must frankly admit the state's responsibility for causing huge harm to the victims and for failing to prevent the harm from spreading. I express my apologies from my heart."

With the enactment, the plaintiffs plan to conclude a basic agreement Tuesday with the government to pave the way for the pending lawsuits nationwide to be settled out of court.

Watching the Upper House approve the legislation in the chamber, plaintiffs smiled and some wiped away tears. Michiko Yamaguchi, who leads the plaintiffs' group, said, "I feel that the five years of fighting (since the lawsuit was filed in 2002) have at last paid off."

Fukuda plans to meet with the plaintiffs Tuesday.

Stalled negotiations on out-of-court settlements saw a breakthrough after Fukuda announced Dec. 23 his decision as president of the ruling Liberal Democratic Party to seek a lawmaker-sponsored bill to provide blanket relief to the sufferers.

The bill was submitted Monday to the Diet, was passed unanimously Tuesday by the Lower House and was sent to the Upper House for final legislative approval.

Under the law, people who contracted hepatitis C from contaminated blood products, including fibrinogen, will receive compensation ranging from ¥12 million to ¥40 million per person depending on the severity of the case.

The government will provide around ¥20 billion to set up a fund at the Pharmaceuticals and Medical Devices Agency to pay the relief. The drugmakers will also be required to offer contributions.

Gist of hepatitis C relief law

The following is the gist of a law enacted Friday to offer blanket relief for people with hepatitis C caused by tainted blood products:

* The government admits responsibility for causing huge harm to victims and failing to prevent the harm from spreading.

* The law will provide relief to those who contracted hepatitis C from contaminated blood products, such as fibrinogen.

* Victims entitled to relief are required to submit certification as hepatitis C sufferers, such as court rulings.

* Compensation ranging from ¥12 million to ¥40 million per person will be paid depending on the severity of the case and the balance will be paid if the condition worsens within 10 years.

* A fund will be set up to ensure payments, with the government providing the resources.

* The fund will call for drugmakers to provide contributions.

Here are further references from the Foreign Correspondences Club of Japan and The Japan Times respectively :

Fukuda, Kawada & Yamanishi, "Landmark Hepatitis C Settlement"

Fukuda meets, apologizes to hepatitis C victims

Now for the reports on the possibility of inquiries, which may or may not be as revealing as they should be .. we will just have to wait and see .. wait wait wait again for the victims of cover up and injustice ... a national sport for politicians whatever their political party may be ...

Families win long fight for hepatitis C deaths inquiry

By CRAIG BROWN

FOR the last eight years of her life, Eileen O'Hara was in constant pain – all because a blood transfusion that was meant to save her life went wrong.

The grandmother was one of many innocent victims fatally infected with the debilitating hepatitis C virus by contaminated NHS blood stocks during the 1970s and 1980s.

After a long campaign, her relatives yesterday celebrated a judge's landmark decision that will force Scottish ministers to launch an inquiry into the scandal.

Lord Mackay overturned a 2006 ruling by Scotland's most senior law officer, the Lord Advocate, Elish Angiolini, who ruled there should not be fatal accident inquiries into the deaths of Mrs O'Hara, 72, and the Rev David Black, 66, a haemophiliac who died of hepatitis C in 2003. Lord Mackay held that Ms Angiolini's decision had breached their human rights.

It is thought to be the first time a Scottish judge has quashed a decision of the Lord Advocate.

Mrs O'Hara's daughter, Roseleen Kennedy, said: "We knew we couldn't change what had happened. It's really been for us about finding out the truth, and always realising that there's hundreds of others out there that may still have this to go through. We didn't want anyone else to be in this position."

Another daughter, Annette O'Hara, 39, from Bishopbriggs, said: "I'm delighted that at last we get an opportunity to find answers to the questions we've had for many years.

"It's been a struggle. It has been very difficult at times, but luckily we are a close-knit family and we've been able to support each other. It would have been easy to give in, but we just felt that we had to do it for our mother."

Mrs Kennedy, 42, from Scotstoun, Glasgow, described how her mother's illness had gone undiagnosed until 1995, when she was diagnosed with cirrhosis of the liver and subsequently hepatitis C. She contracted it during one of two operations on her heart in 1986 and 1991.

"It wasn't just one part that hurt – it was her whole body," she said. "Her stomach became swollen, her liver and spleen enlarged. Later on, she needed a wheelchair whenever she wanted to go out.

"She had always been a very active person. In the final weeks, she was bedridden in hospital."

A summary of Lord Mackay's findings said any investigation "could include the Lord Advocate seeking a fatal accident inquiry before a sheriff or the setting up of a public inquiry by the Scottish ministers".

The previous Labour administration at Holyrood had resisted calls from victims and their families for a public inquiry, but the SNP government has said one will be held. Its remit has yet to be established.

Frank Maguire, of Thompsons Solicitors, has campaigned on the family's behalf for more than three years.

He said that while the inquiry would focus on the deaths of Mr Black and Mrs O'Hara, it would have implications for other sufferers. "There are still people out there who have had transfusions in the 1980s and early 1990s who don't know they have hepatitis C because nothing has really been done about tracing them and they may have never come back into contact with hospitals since then," he said.

Hepatitis C is spread mainly through contact with the blood of a person who is infected. It can lead to liver failure, but it can take years, or even decades, for symptoms to appear.

ANXIOUS WAIT OVER 'TAINTED BLOOD' TESTS

BRITISH soldiers could face months of anxious waiting for tests to establish whether they were exposed to contaminated blood in Iraq and Afghanistan, it emerged yesterday.

All of the 18 military casualties given transfusions with blood that had not been tested properly have now been informed of the risk. But Derek Twigg, the defence minister, said some had still not had their tests completed because blood samples could not be taken for "some months" after the transfusion. It was revealed last month that seriously injured British troops had been given blood from the US military that had not been properly screened, meaning it could contain infections.

Mr Twigg added: "The MoD fully recognises the distress this will have caused."

Now for the Herald's version - and please note the lack of comment from the Tories, who of course presided over much of the period of the contaminated blood products scandal ... I wonder if they will be trying to fiddle the remit of any inquiry so their members can escape blame - let's hope the SNP don't let them ...

Ruling adds to pressure for hepatitis C inquiry

WILLIAM TINNING

Pressure has mounted on Scottish ministers after a senior judge ruled that authorities acted unlawfully by refusing an official investigation into the deaths of two patients who died after being infected with hepatitis C through NHS blood transfusions.

In an unprecedented move Lord Mackay of Drumadoon yesterday quashed the Lord Advocate's decision not to hold fatal accident inquiries into the deaths of Eileen O'Hara, 72, and the Rev David Black, 66, who both died in 2003.

Lord Mackay's judicial review findings, issued by the Court of Session in Edinburgh, said ministers and Scotland's most senior law officer acted in a manner incompatible with their rights.

Last night the SNP administration was coming under pressure to honour a pre-election pledge to hold a public inquiry into people infected with hepatitis C and HIV from blood products in the 1970s and 1980s.

The former Labour-led Scottish Executive had resisted calls for a public inquiry in 2006 from victims and families of some 4000 people in Scotland who were given contaminated blood.

Mrs O'Hara received blood transfusions in 1985 and 1991 and was later diagnosed with hepatitis C.

Mr Black was a haemophiliac who had a liver transplant and received blood transfusions in the 1980s. He died of liver cancer due to hepatitis C.

Yesterday's ruling was welcomed by Mrs O'Hara's family and other campaigners. The judicial review was raised by Roseleen Kennedy, one of Mrs O'Hara's daughters, and Mr Black's widow Jean.

At a press conference in Glasgow, Mrs Kennedy, 42, a schoolteacher from Scotstoun, Glasgow, said: "I am just delighted that at last we got an opportunity to find answers to some of the questions that we have had for many years."

Solicitor-advocate Frank Maguire who campaigned on the families' behalf for more than three years, said the £100,000 cost of the families' legal action would be paid by the Scottish Government.

He said the families now wanted a full judicial inquiry by a Court of Session judge.

Philip Dolan, chairman of the Scottish Forum of the Haemophilia Society, which provided almost £50,000 for the legal fight, described the ruling as "great news".

In his findings, Lord Mackay said both the Lord Advocate and ministers had flouted Article 2 of the European Convention of Human Rights which states that "everyone's right to life shall be protected by law".

The law says that when a person dies after hospital treatment, ministers are obliged to have in place a system capable of providing an effective investigation into the death.

Lord Mackay further ruled that the only way such an investigation into the death of Mrs O'Hara or Mr Black could be achieved would be if the authorities were to initiate a public inquiry.

Lord Mackay continued the cases until a further hearing to allow the Lord Advocate and ministers to decide what action they will take after the ruling. No date has been set for the hearing.

Health Minister Nicola Sturgeon said yesterday: "We will now study the judgment in detail and in discussion with the Lord Advocate will consider its wider implications."

Dr Richard Simpson, Labour's spokesperson on public health, said: "Labour supports the right of individual families to know the exact circumstances that led to the death of their loved ones."

Ross Finnie, Liberal Democrats health spokesman, urged Ms Sturgeon to offer Lord Mackay the Scottish Government's "absolute commitment" to hold an inquiry.

Scottish Conservative Party justice spokesman Bill Aitken said he felt it was inappropriate to comment ahead of further legal and judicial process being completed.

A Crown Office spokesman said the opinion of the Court of Session and Lord Mackay, in particular, had been noted and would be "carefully considered" before any decision was taken.

Scottish Area Health Boards - not a place of transparency or fairness as patients made to fight for treatment

No lawyers today - something much worse.

Making people fight for three years to get medical treatment for their child. Is this a good advertisement for New Labour & Tony Blair's Scotland ?

What a disgusting thing. Really disgusting - forcing people into the courts to get their Health Boards to give them medical treatment - even worse .. even more disgusting, making parents wait until their child's medical condition deteriorated to an extent they were in desperate need of the medicine

How cruel. How inhuman. Really disgusting.

I don't like to hear of these kinds of scandals. I remember how I begged an arrogant Consultant at the Borders General Hospital to give my mum treatment & a brain scan, but as the equipment in her room fell to bits & no one could give my mum oxygen, the Consultant had made up his mind she was already dead (actually took 8 hours for her to die). I even had to volunteer to do the brain scan on my mum myself, along with another nurse, as there were no staff, and we only got permission to do the brain scan when the junior consultant intervened. At the end of it, the doctors all lied to cover up what happened, and I was made to be the villan by the Hspital - for asking they save my mum which they didn't want to do in the first place. What a nightmare.

However - it happens to many, young & old alike - up and down Scotland, up and down the length of the UK - while Blair is pontificating about how people should conform to our values, we aren't even saving our own people. As a nation we would rather waste billions on someoneelses war, than treat our own. Disgusting. What a scandal - and those idiots in Government and those wasters in the Area Health Boards, Trusts, or whatever, waste their money on anything but the patients. Horrendous. Simply disgusting.

Story & my own memories too sad to say anything else on this, but my best wishes to the family and congratulations to Hayleigh's parents for their perseverance in winning the medical care for their child. Get well soon Hayleigh.

Links from the Herald and Scotsman to follow with the articles

http://www.theherald.co.uk/news/76360.html

Parents win fight for girl’s £100,000 NHS treatment
ALAN MacDERMID December 09 2006

A couple yesterday won a three-year battle to get NHS treatment for a rare degenerative condition crippling their daughter.

However, Robert and Heather Reynolds had to wait until eight-year-old Hayleigh's condition had deteriorated before NHS Greater Glasgow and Clyde would sanction the £100,000-a-year use of a drug.

Hayleigh, of Barmulloch, Glasgow, suffers from Hurler Scheie syndrome, a disorder caused by a deficiency of an enzyme required to break down substances in the body.

The syndrome, also known as mucopolysaccharidosis (MPS), occurs in infancy and causes progressive physical, and in some cases mental, disability. Life expectancy rarely extends beyond the teens or twenties.

The Scottish Medicines Consortium had recommended against prescribing the drug laronidase, an enzyme replacement therapy.

The health board then refused to fund the treatment, so her parents took it to the Court of Session and obtained an undertaking last month that the board would review its decision.

The board relented yesterday, a change of heart which means Hayleigh's treatment can start before Christmas. One of its reasons is that her condition has deteriorated over the past two years.

Mr Reynolds, 43, the janitor at St Cuthbert's RC Primary School in Barmulloch, said: "As time has gone on she has got a lot worse. She had to have an operation a couple of weeks ago to drain fluid from behind her eyes, to ease the pressure. You can't help wondering if that would have been necessary if she had been getting the treatment.

"Hayleigh's eyesight and hearing have also deteriorated, she has an enlarged spleen and liver which cause stomach upsets, and she has mobility problems. But she just gets on with things and does well with her lessons.

"We are very proud of her. But no parent wants to see their daughter dying as a teenager, which is what could have happened. Any parent would fight for treatment for their child if they knew it was out there."

When Hayleigh was diagnosed as an infant her consultant at Yorkhill, Dr Peter Robinson, told her parents about the treatment and put in a funding request. But it was turned down. Yet another of his patients, a girl slightly older than Hayleigh, was able to get it. She is being funded by NHS Ayrshire and Arran.

In fact the MPS Society, which advised and supported the Reynolds through their legal battle, said Hayleigh was the only person in the UK to be refused the drug. The illness also affects the girl's mobility, particularly her joints. "I can't lift my arms above my shoulders, and my knees get stiff," she said. "But I am hoping now that I will be able to play normally with my friends, and go to gym at school."

The couple have two other children, James, 13, and Emma, seven. They had begun to contemplate splitting the family so that Mrs Reynolds could take Hayleigh to England so she would be eligible for treatment there. Mrs Reynolds, 38, said: "It still hasn't sunk in yet, but it is the best news we could have hoped for. We are going to see the consultant next week and we will be told when the treatment will start."

NHS Greater Glasgow said the decision had been taken after a review by senior clinical staff.

A spokesman said: "Although we agree with the Scottish Medicines Consortium's view that the overall health benefits of laronidase are modest and the drug is not a cost-effective treatment, we believe that there are exceptional circumstances in this particular case that led us to conclude this patient should be offered treatment.

"These include the fact the patient now meets four of the five inclusion criteria used by the Department of Health in England to assess eligibility for treatment with laronidase, compared with only two in 2004.

"We also took into account the fact that another patient with the same condition is being prescribed this drug by a neighbouring health board.

"The decision to prescribe laronidase in this individual case has been made on the basis that the patient's treatment will be closely monitored and reviewed for effectiveness.

Society for Mucopolysaccharide Diseases

http://thescotsman.scotsman.com/index.cfm?id=1828722006

Winners and losers in the drugs lottery
LYNDSAY MOSS HEALTH CORRESPONDENT

THE rationing of expensive drugs on the NHS was brought into sharp focus yesterday when a young girl won her battle for treatment, while hundreds of other patients lost out.

Hayleigh Reynolds, eight, is to receive a £100,000-a-year treatment for her rare degenerative condition after a U-turn by her health board.

At the same time, The Scotsman has learned that more than 1,000 multiple sclerosis (MS) patients are set to be denied a powerful new treatment as it is deemed not cost-effective by medicines watchdogs.

These contrasting situations highlight the difficult decisions being made by officials with limited NHS resources and for the patients whose lives are governed by them.

The Scottish Medicines Consortium (SMC) was set up in 2001 with the aim of ending postcode prescribing and making access to drugs fairer.

But doctors must face the daily heartache of having to tell patients they cannot have a certain drug because it is not approved for funding. In some cases, this leads to people selling their homes to fund their treatment privately.

Yesterday the Reynolds family received the good news that NHS Greater Glasgow and Clyde would fund the only treatment for the rare genetic disorder Hurler Scheie syndrome.

The drug laronidase is not approved by the SMC, but the family challenged the health board and have won their case.

While they were celebrating, patients whose MS keeps coming and going - known as relapsing remitting MS - are to be denied access to the drug Tysabri when the SMC announces its decision on Monday.

Tysabri - the first new treatment for the disease in the past ten years - is seen as one of the last hopes for patients with relapsing remitting MS who fail to respond to other therapies.

Patients will now face the prospect of either funding the treatment themselves or hoping their doctor will prescribe the drug anyway. The treatment costs £14,690 a year per patient, compared with about £8,000 for other current MS treatments.

Some 10,400 people in Scotland have MS, and more than 1,000 of these could benefit from Tysabri. There are more people with MS in Scotland per head of the population than anywhere else in the world.

At least two English patients are expected to start on Tysabri, paid for by the NHS down south, and more than 20 patients in Ireland are already receiving it.

Mark Hazelwood, director of the MS Society Scotland, said: "If what we are hearing is correct and the SMC does reject Tysabri, people with severe relapsing remitting MS will be denied a vital treatment option.

"In theory, Tysabri can still be prescribed if a health trust agrees to it, but in practice we know few neurologists and GPs will override SMC advice.

"A negative decision would be bitterly disappointing."

Across the UK, patients have fought long-running battles with health authorities to get access to drugs. The breast cancer therapy Herceptin has been at the centre of the most high-profile campaign and is now widely available.

Professor Jim Cassidy, from the Beatson Oncology Centre in Glasgow, said:

"Our cancer patients know about these drugs because they have read about them, seen them on the internet. They come to us and say, 'can we have this drug' and we have to say no, because it is not approved for funding on the NHS."

He said if patients asked if a treatment was available if they paid privately, he had to tell them that it was. "Then you get people selling their houses and borrowing money to pay for treatment," he said.

Sheila McLean, professor of medical ethics at Glasgow University, said rationing of treatments had always gone on in the health service, but bodies such the SMC and its English equivalent, the National Institute for Clinical Excellence, were now helping to make the process more fair and transparent.

Family celebrate change of heart over costly drug
WINNER

THE Reynolds family described it as the best news they could have hoped for.

Eight-year-old Hayleigh suffers from Hurler-Scheie syndrome - a degenerative disorder caused by an enzyme deficiency which causes organ damage and dwarfism, writes Lyndsay Moss. Now, thanks to a change of heart by Greater Glasgow and Clyde Health board, she will receive the costly enzyme replacement therapy laronidase.

Hayleigh's father, Robert, 43, said: "This will change Hayleigh's life.

"Any parent would fight for treatment for their child if they knew it was out there." Hayleigh's mother, Heather, 38, said their daughter may even be able to start the treatment before Christmas.

With a price tag of £100,000 a year and no approval from the Scottish Medicines Consortium, the health board had been reluctant to pay for the drug. But following a legal challenge by the family, who live in the Barmulloch area of Glasgow, that decision was changed. A health board spokeswoman said: "Following a detailed review, it has been recommended that laronidase should be made available in this case."

Christine Lavery, from the MPS Society, which campaigns for patients with such diseases, said she was "ecstatic" for Hayleigh's family. But she said they should not have had to wait three years for treatment. 'What price can you put on quality of life?'

LOSER

FIONA Burns leads a full and active life, despite having been diagnosed with MS three years ago, on her 27th birthday. She currently controls her condition with drugs, but she lives with the possibility that these may one day stop being effective. If that happens, she will have few other options.

So the decision to deny Tysabri on the NHS in Scotland causes the 30-year-old particular concern. Ms Burns said she would be willing to pay for Tysabri herself when the time came and if the NHS would not fund it.

An account manager in Edinburgh, Ms Burns started off taking the drug Copaxone to control her condition, but this was ineffective. She now takes beta interferon drugs, but she knows there is a chance these could one day stop working as well.

"Since I began taking them, I have got my life back and I hope that they will continue to work," she said. "But I know that if it stops [working] there is not much else out there that will work. "That is why the SMC's decision not to approve Tysabri is so disappointing. "I would ask the SMC - what price can you put on quality of life? What price can you put on someone's dignity? "Tysabri would be an amazing Christmas present for people with MS."