I have just had an email from my local MP regarding this matter, he is going to raise our concerns with the department of health and social care. 

I have added that my current amazing GP is the only reason for this being picked up & has been MY god send. But as I have read from numerous of your experiences on our Facebook community page and the fact that none of my previous healthcare providers knew or informed me on this being a possible cause for recurrent ent problems I’ve had all my life - I’ve highlighted the fact that more knowledge and awareness needs to be taught to all gps and first line healthcare providers!! 

I have also expressed the fact that like stated in my petition, at ALL stages of this disease removal surgery NEEDS to be classed as urgent/emergency to avoid further complications and anxiety that follows. Long delays and wait times are not acceptable for this. 

thank you to everyone who has signed and supported us all that suffer, hopefully we will have change in the near future.