Health service accused of ignorance and bias against Down's syndrome sufferers

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The 'unfair' treatment of Down's syndrome sufferers by the health service has been highlighted by Craig Phillips' donation of his Big Brother prize money to send a seriously ill teenager for an operation in America.

The 'unfair' treatment of Down's syndrome sufferers by the health service has been highlighted by Craig Phillips' donation of his Big Brother prize money to send a seriously ill teenager for an operation in America.

Joanne Harris, 18, a family friend from Shrewsbury, needs £250,000 to pay for a heart and lung transplant. According to her parents the NHS has refused to put Joanne, who has Down's syndrome, on the waiting list for transplants because they are reserved for "normal people".

The Down's Syndrome Association said yesterday the health service frequently discriminated against people with the syndrome.

"We are increasingly aware that people with Down's syndrome in this country do not always receive the health care they need due to ignorance and discrimination by some healthcare professionals," Susan Waights, the association's spokeswoman, said.

The association did a survey of parents of affected children last year, which showed that some 28 per cent of respondents had a high level of dissatisfaction over medical care and said they had suffered discrimination by the health service. "This varied from GPs calling their children 'mongols', a term that went out 30 years ago, to failing to provide life-saving treatments, like in Joanne Harris's case," says Ms Waights.

She says there are a lot of misconceptions over people with Down's syndrome. "It is widely believed that people with Down's syndrome die much earlier. That is no longer true. Their life expectancy is only slightly shorter than other people. There have been cases of people with Down's syndrome living to 100 years of age."

Ms Waights said that 40 to 50 per cent of people with Down's syndrome suffer from some sort of heart defect. "That used to be the big killer. But in most cases corrective surgery can now deal with these problems."

Joanne Harris was born with a very severe heart defect. Since her 13th birthday her heart condition has made her progressively slower and more out of breath and she faces using a wheelchair.

Joanne's aunt, Vivienne MacCarthy, said: "There are too many Down's syndrome dying on hospital trolleys around the country. We felt doctors had decided Joanne was going to die.

"We had a letter from a cardiologist at Birmingham Hospital saying there is nothing they can do and more or less saying, 'Enjoy her while you can'."

The Department of Health yesterday denied that Joanne was being discriminated against. "Any patient with Down's syndrome who has a severe heart condition can be assessed for a transplant. But a heart transplant involves treatment with very powerful drugs to suppress the patient's immune system and prevent the body rejecting the new heart," a spokesman said.

Each year only 200 heart and 15 heart and lung transplants take place. "In the end it is up to skilled transplant doctors to carefully assess patients as individuals and decide who will get the most benefit from a transplant," the spokesman said.

Now Joanne's only chance is to have the operation in the United States, which will cost £250,000. Her family says a transplant would help her fulfil her dream of working in a cafeteria in Sainsbury's. They had raised £46,000.

Then Craig Phillips pledged to help Joanne after emerging victorious from the Big Brother house, donating his £70,000 prize to Joanne's fund.

Yesterday further companies and individuals offered donations. An internet holiday company has promised to fly Craig and Joanne to America for the surgery. Ebookers.com also promised to let Craig cash in the £3,000 Mount Everest trip he won and put the money towards Joanne's operation.

Jennifer Evans, Ebookers spokeswoman, said: "And he still won't miss out on a holiday because we will send him somewhere else. We are also going to post a note on the website asking subscribers to send us any currency they have left from their travels. We will convert it into sterling and put it towards Joanne's fund."

Craig, 28, who has been campaigning on Joanne's behalf, said he would do any charitable work he could to raise the money. He said: "There is still a lot of money that we need to obtain. I'm open to all offers. I'm hoping it will be just another few months before we get her to America for the operation that she unfortunately can't get in this country."

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