I miss my mother so much - J.K. Rowling's narrative of her mother's battle with multiple sclerosis

Inside MS, Summer, 2002 by J.K. Rowling

I need to pause here, not just to blow my nose, but also to state that the rapid spread and severity of my mother's condition was not typical. She had a "galloping" form of the illness. The effects of MS differ widely from person to person and I would hate to think that somebody newly diagnosed with MS is reading this and assuming their illness will follow the same course.

I went to live in Portugal nine months after she died. MS is virtually unknown in the south of Europe; my Portuguese (now ex-) husband didn't understand what had killed her. It was only when I came to live in Edinburgh at the end of 1993 that I started to hear MS mentioned, or read about it again.

Let's fast-forward now--broke, single mother wrote bestseller in cafe--to last year, when I became Patron of the MS Society, Scotland. You might think that I have already explained why I wanted to help, but the fact that the illness took one of the people I loved most is not the full story.

MS, as I have already said, is more likely to strike a Scot than a person of any other nationality. I live in the MS capital of the world. Surely, then, our governing bodies would want to set world standards in research and care? Well--you be the judge.

While research into MS is proceeding in a number of academic and medical centers, most of this is funded by the MS Society. None of the research is funded by the Scottish Parliament and only a tiny amount is paid for by the British government.

While there is still no cure for MS, beta interferon (actually three different drugs) has been licensed for use in Britain for six years, and has recently been joined by glatiramer acetate (Copaxone). These revolutionary drugs slow down the course of the disease for many patients.

In Finland, 15% of the MS population get one of these drugs, in Germany and Italy, 13%, France and Greece, 12%, in both the Irish Republic and Northern Ireland, 8%. And in the U.K.? Between 2 and 3%. You've got a better chance of being prescribed an MS-modifying drug in Turkey.

It would cost around 46 million [pounds sterling] a year to give these drugs to every person with MS in the U.K. who would clinically benefit from them. That's a tiny 0.09% of what the National Health Service will spend this year.

Those with MS who will not benefit from drugs can be taught to minimize the impact on their daily life if given access to professionals such as dieticians, occupational therapists, and physiotherapists. Such services are available only erratically and inadequately across most of the U.K.

In 1999 the MS Society conducted a large survey of people with MS all over Britain, to find out what they thought of the medical and care services available. Some 16,500 people completed the survey. Here are a few of the results: 81% said clinic staff did not discuss the implications of having MS at the time they were diagnosed; 68% were unable to meet a neurologist to discuss their concerns in the month following diagnosis; 74% felt they did not receive adequate support from the health service around the time they were diagnosed; 66% received no advice about how to manage day-to-day activities to reduce impact on their symptoms; 85% had not been advised by their local health service about the range of services it offered to people with MS.