The MS Society brought together healthcare professionals and those with personal experience of multiple sclerosis at a specially organised event this month that was designed to increase awareness of the neurological condition in children.
"We have become increasingly aware that paediatric multiple sclerosis exists, but there is a general lack of awareness of the issue and very little information available, especially for patients," says Jayne Spink, director of policy and research at the MS Society. "At the event, research experts presented evidence of the problem in the morning, and in the afternoon there were a number of workshops involving patients and carers where people could debate the issues."
The aim of the sessions was for Spink and the other healthcare professionals to learn what more they could do to offer support and improve services for children with multiple sclerosis.
The incidence of MS in children has proved hard to assess. Depending on which study you consult, the onset of the condition occurs at age 16 or earlier in somewhere between 0.4 per cent and 10.5 per cent of cases, which translates as somewhere between 300 and 9,000 people in the UK - an unsatisfyingly vague range. Spink says one problem is that diagnosis can take years, according to carers for children with MS.
Another issue is that children are often treated on adult wards. Spink adds: "We hope the event will improve awareness."