7th April 2003
Nearly half (45%) the people with multiple sclerosis diagnosed in the last three years who took part in a MORI survey are dissatisfied with the support they received from the NHS at the time. The poll among members of the Multiple Sclerosis Society also found one in three members overall (32%) is unhappy with their healthcare generally. Fewer than a quarter can always access MS services on the NHS when they need them.
Findings of the MORI Social Research Institute survey for the Society were released at the start of MS Week in the Society's 50th anniversary year. More than 3,000 people were polled on their experiences of MS healthcare.
Six out of 10 of those diagnosed in the last three years said they had not been able to meet a specialist MS nurse or support worker in the month after diagnosis. Seven out of 10 in that group had not been put in touch with a specialist MS clinic or team.
Society chief executive, Mike O'Donovan, said today (Sunday 6 April 2003), "In June, the National Institute for Clinical Excellence is due to publish guidelines for MS healthcare. Our survey shows just how far standards of care are falling short. It is particularly alarming that the NHS is failing so many people at the crucial time they are diagnosed with such a devastating disease."
Eight out of 10 of those surveyed said their NHS care should be better co-ordinated. A similar proportion wanted someone with knowledge of MS to manage it.
Six out of 10 rate the NHS as poor in providing information about different aspects of their condition. Nine out of 10 have found out by themselves most of what they know about it. Fewer than one in 10 has been asked their opinion to help develop services.
Most believe their quality of care depends on where they live and that they will get a better service if they know what they need and how to ask for it. They say the NHS fails to provide enough emotional support for people with MS.
The survey does reveal some improvements since a poll conducted by the Society in 1999. The proportion of people who said they were able to meet a specialist nurse in the month following diagnosis has risen from 8% to 29%. The number referred to a specialist MS clinic or team has risen from 10% to 15%. Thirty-nine per cent have a named professional responsible for coordinating their care against 24% four years ago.
By contrast, fewer people (80% against 86%) are being informed about
the range of MS services their local health service can offer.
© Copyright 2003, Multiple Sclerosis Society