Dr. Joanne McCarthy:

It is really important to say that this is quite common. That is not to undermine what has been said. This level of expertise is quite common around the neurological bodies and it is usually undervalued. Motor neurone disease is another example. Voluntary bodies shadow affected families. Approximately 400 families, give or take, are addressing the issue of neurology at any one time. Voluntary bodies will shadow an affected family. They know that in six months that family will need a hoist for the patient to get downstairs. These organisations are able to predict needs and provide a wraparound service in the community that really sustains the capacity of those families to live with those conditions.