Alice Mahon: Labour is in power - so why do I have to go private?

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The Independent Online

Just imagine somebody who has spent their whole life in the Labour movement having to go to court, under a Labour government, to try to get the NHS to pay for treatment. Imagine being forced to choose between going private, or going blind.

I was Labour MP for Halifax for 18 years, and I didn't believe this could happen. I can still hardly believe it. But it has happened to me and - I have since discovered - to thousands of others.

I went to a GP last September because I had some discomfort at the back of my left eye. He sent me to an optician, who referred me to a consultant at Calderdale Royal Hospital in Halifax. The consultant diagnosed macular degeneration.

"Oh dear," I said, "that sounds a bit serious." He said: "It is, but it's treatable. Even though you have got quite a bit of it, you would benefit from Lucentis. It suppresses the condition immediately, and in one or two cases there is real improvement. The only problem is that you can't automatically get it on the NHS."

I was told I had to apply to a committee of the primary care trust called the exceptions committee, but this committee was not going to meet for seven weeks. I had a condition which could result in me going blind quickly, and I was having to wait. I was shocked.

The committee met, and they told me I could not have the treatment on the NHS on the grounds that they didn't think it was clinically effective and the National Institute for Clinical Excellence (Nice) had not approved it - although in the NHS eye clinic I spotted a pamphlet advertising this treatment and singing its praises.

I wrote to Gordon Brown and the Health Secretary, Patricia Hewitt, saying that it was against every principle I have to pay for NHS treatment. I also said that I think it's a false economy to allow somebody to lose their sight when there is treatment available.

Patricia wrote back, agreeing that the drug did not have to be Nice-approved, and that it did not need to be licensed in the UK before it was prescribed, because the Americans and Europeans have approved it. She referred me to the strategic health authority, as the only people who could overrule the PCT, but they came back and said I had not exhausted the appeal procedure at the PCT. But my condition is time-limited. I was losing sight in one eye, and in two or three months I could lose the sight of the other.

I saw the consultant again this month, and he warned me that there is increased activity, so I agreed to go private. I had the first injection the next day. Three of these injections will cost me £5,500, but I have to say that since then, the eye has been much more comfortable.

I have found out since that there are thousands of people in my position. It was quite emotional when I went for my first injection, because there were people spending their life savings or whose relatives were coughing up to pay for their treatment. I have decided that the best service I can do for them is to generate as much publicity as possible, and to get people to pressure their MPs and the government to have the NHS fund this treatment.