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."