Tourettes Action carried out a survey to find out what happens to all of those who get sent the Consultants’ List. The survey showed that only 25 % of those who request the list end up seeing a consultant from the list . The remaining 75% either did not seek referral, or did seek referral but failed to get it from their GP.

The survey was sent out to 549 people who had requested the Consultants’ List from us during the past year. 68 of them completed the survey.

Surprisingly, more than half of those who sought referral from their GP did not receive it (54%, see figure below). Of the 25% who did end up seeing a consultant from the list, the majority said that the waiting time for an appointment was 3 months or less. 6% of those who had received referral from their GP however had to wait 6 months or more for an appointment.

The main reason for not seeking referral after having received the list was because other, local services  instead were chosen. The second most common reason for not seeking referral was because no consultant on the list was near enough. Other reasons for not seeking referral were lack of time, because requested information was just being passed on to someone else, or because the symptoms had subsided since having received the list.