My son has what I have seen as the most common genetic condition: Neurofibromatosis Type 1. We are facing an agonising wait (four months to date) to have in depth testing done (biopsy) to see if a large growth he has is cancerous. One has not been forthcoming from either national centre for the disease and I imagine this must be due to resource shortages. He has been referred to a local hospital now but whether or not the referral will be accepted I do not know. If not our local GP can present an exceptional case request. The expertise on the disease is concentrated in these centres so going privately is not clear cut but that is the next step. I am advised that “many parents” are contacting a special helpline for the disease complaining of refusal to perform imaging and biopsies. If it were a cancer pathway no doubt he would have had a biopsy or more and all the imaging done months ago. The national centres offer a new drug for when a growth causes symptoms but the side effects are reportedly intolerable for many, it has to be taken long term and only helps 70% of patients with inoperable growths.