More MS news articles for June 2001

SOS CAMPAIGN: MS patients fend for themselves in culture of neglect

03 June 2001
By Tom Peterkin Health Correspondent

MULTIPLE sclerosis patients in Scotland fail to receive adequate care from the social work departments of local authorities, Scotland on Sunday can reveal.

The complex disorder, which affects more Scots on average than any other nationality, can pose a variety of difficulties to patients depending on the severity of the disease.

The 10,400 people with MS in Scotland require a wide range of treatment and care including physiotherapy, occupational therapy, specialist nursing, home help, aids and adaptations for the home.

Specially adapted rooms can make a huge difference to a patientís quality of life, while home visits from professionals employed by social work departments are essential for the well-being of people with advanced forms of MS.

Yet, although Scotland is the MS capital of the world, it is not just NHS treatment which is haphazard and unfair. Evidence is building up to suggest that a large proportion of patients are failing to receive adequate social work care.

Rosemary Chesson, a reader in health services research at Robert Gordon University in Aberdeen, is one of the few academics to look at this subject.

The Multiple Sclerosis Society Scotland has just awarded her £52,000 to investigate this neglected aspect of caring for sufferers.

"We found that no one was doing research to show us what kind of support should be put in and it was brave of the MS Society to fund the first non-medical study to look at these issues," said Chesson.

"One of the things we have identified is that in some places you have to wait three months for an occupational therapist, but that is just one of the factors. There are also issues such as the cost and suitability of housing."

Surveys designed to explore these issues have revealed an alarming lack of support for a large proportion of people with MS. A recent study of 150 patients showed that nearly half the respondents received no community services or had any modifications made to their homes, even though many were moderately or severely disabled.

Over half the severely disabled group did not get assistance from a home help or care attendant.

Chesson said: "One of the things we are also looking at is the psychological pressures for MS patients. They experience relationship problems. The disease affects relatively young people. It is a deteriorating condition that can lead to quite a rapid death as well as physical problems and cognitive problems.

"In the past people with MS with severe disabilities were hospitalised. Most today will live in the community, wishing to avoid at all costs long stays in an institution. Most will not receive the level of care required and most will have to rely on their own resources."

Another difficulty is that the partners and children of patients in their 30s and 40s find their own lives becoming dominated by the illness. While many are prepared to devote themselves to a loved one, it can create stress.

Chesson said: "Many have young children and some of these are becoming young carers. They become cut off from their friends. These pressures mean that people need some time to take a break from each other."

Unfortunately for most patients there is little that can be done to resolve the problem, with respite care facilities few and far between.