Many people with multiple sclerosis are unhappy with the support they have received from the NHS, a survey has found.
Many MS patients need support
Researchers asked people who had been diagnosed in the past three years whether they were happy with the support they were offered at the time they found out they had MS.
Nearly half (45%) those who took part in the poll said they were dissatisfied.
Rebecca Linsell was diagnosed with MS last month.
She said: "Quite frankly I have been amazed by the lack of support from the NHS.
"After being told I had MS, which was a big shock, I was literally shown the door within five minutes.
"I am now being referred to a doctor who specialises in MS, which I understand should be in the next month or so. But in the meantime, I am in state of limbo.
"I was given no information about MS, what it is, what to expect, or even a point of contact if I had any questions. I cannot even speak to an MS nurse until I have seen the next specialist."
One in three of those surveyed said they were unhappy with their healthcare in general.
Fewer than a quarter felt they could always access MS services on the NHS when they needed them.
More than 3,000 members of the Multiple Sclerosis Society took part in the survey, conducted by MORI.
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.
Our survey shows just how far standards of care are falling short
Seven out of 10 in that group had not been put in touch with a specialist MS clinic or team.
Guidelines to be published
In June, the National Institute for Clinical Excellence is due to publish guidelines for MS healthcare.
Mike O'Donovan, MS Society chief executive, said: "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.
Other findings included:
- 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 people surveyed believed their quality of care depends on where they live and that they would get a better service if they know what they need and how to ask for it.
They said 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 increased from 8% to 29%.
The number referred to a specialist MS clinic or team also increased 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.
MS is the most common disabling neurological disease affecting young adults in the western world.
It tends to strike between the ages of 20 and 40. Around 85,000 people are estimated to have MS in the UK with 50 new diagnoses made every week.