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

Because of the nature of the disease and the complete inadequacy of the services available, the 85,000 people in Britain who have MS are not the only ones affected. Many care needs are met by members of the family and friends, whose sometimes heroic services are unpaid and unsung.

The MS Society is campaigning to improve these standards of care. One of the quickest and most cost-effective ways of improving care is the designation of specialist nurses. There are only 100 MS nurses across the U.K. Standards of care could be significantly improved overnight, at very small cost, by doubling that number.

Physical aids and adaptations are usually needed. Wheelchairs are the most obvious, but there are hundreds of other aids and adaptations that can make a huge difference to the quality of life. The big ones involve alterations to homes: lifts, doors, showers, hoists, kitchens. With such adaptations, a degree of independence and dignity is possible for the person with MS. Without them--heavy dependence on others and an ever-narrowing life.

MS is progressive--it generally gets worse, so the needs of people increase over time. But are their needs regularly re-assessed? No.

The key specialists involved in getting adaptations are the occupational therapists (OTs). There is an acute shortage of OTs everywhere in Britain. Currently, in Glasgow, there is a waiting time of 29 weeks to get an assessment of needs from an OT. Then there is a long waiting time to find out if the Social Work Department approves the alterations. Then (assuming they do), there is a further long wait until the work is done. It can take up to two years to get a simple modification. By this time for many people with MS, the disease has progressed and their needs have outgrown the adaptation.

The MS Society is the largest organization fighting for the rights of people who have been overlooked for too long. Its help line, pamphlets, and booklets are the main sources of information for most people affected by MS--and for many professionals. Its 370 branches across the U.K. provide activities, support, information, and advice for people with MS, wherever they are. It is by far the largest single source of funds for research into MS. Its welfare grants help give thousands a quality of life, including funding for adaptations and vacations, which would otherwise be impossible. Its specialist respite vacation centers are vital to the continued functioning of thousands of families. Its lobbying and PR have been vital in getting MS onto the political agenda. The Society's work is entirely funded by voluntary contributions.

I miss my mother almost daily, and I feel desperately sad for all she missed. She died before either of her daughters got married, died before Di gave up nursing and became a lawyer; she never met her granddaughter, and I never told her about Harry Potter.

And while she would have preferred me to have cleared away the remains of the take-away in the kitchen before I sat down to write this, I might have got away with it once I pointed out that support for people living with MS is as woefully inadequate today as it was 10 years ago. She would have found that difficult to understand, and so do I.