Ms Anna Budayova:

Yes, I agree. There should be an end to the means test. We know the diagnosis of my baby who is only 11 months. We already have five diagnoses. That is expensive; the cost is huge. We know what is ahead of us. It is probably not good to say it - it is terrible - but there is a big chance she will tick more boxes and more diagnoses, which we already have to deal with emotionally. With any visit to the hospital there is stress about what it will be this time, and one is not ready for this. A huge thing for any parent in our situation is not to need to be worried that there will be no money for diesel or for appointments or for babysitting because they are massive costs. That should be represented and we should be accepted as citizens. For me, I feel as if I am a second-class citizen because I am caring and because this is not recognised. That would be different for any one of us.