Ms Olga Wehrly:

The UK is fantastic for that. All of the forms are in plain English there because they have had a multicultural society for such a long time. The statistics are important. The likes of Facebook groups are amazing resources but they can also be sources of disinformation and places where we can pick up the wrong ideas. One only has a finite amount of energy to spend but over the years I have gone down some weird rabbit holes trying various remedies in the hope they would work and then I realised I needed to stop. Having adequate resources is so important and saves time for everybody and you can trust those resources as well.

Another point was made about the groups that are managed. Everybody who runs these groups is also ill or has significant hindrances so it becomes a problem in advocacy because there is a lot of genuine fatigue. Nobody wants to take on the mantle of being the person who is co-ordinating the group, who will talk to the Minister and so on. It is hard for people in this area to be clear, to have a voice and to be consistent because we are all holding each other up and we are all tired.