Hello Jem,
Very sorry indeed to read about your Grandson's diagnosis with a rare disease. What a worry for you and your family. I live in Dorset too with two grandchildren in Dorchester. The youngest is 19 months old now about the same age as your Grandson. I live in Poole. Whereabouts in Dorset are you?
As Miriam said, it is good that Drs in Bristol have got to grips with the situation and are trying to do the best they can.
Rare diseases need expert advice on diagnosis treatment and management and as the NAC is the only centre with the appropriate specialist expertise in the U.K. it makes complete sense for your Grandson to be seen by a specialist Dr there. Please do ask for your Grandson to be referred. He will be in the very capable hands of the only experts for CAPS in the U.K.
All known amyloidosis patients in the U.K. are automatically referred to the NAC because it is the National Referral Centre for the disease. The Drs there really are experts in their field. Additionally as a centre for rare diseases, they understand patients' unusual concerns in a highly specialised way. Rare diseases are very isolating. All NAC patients are treated with the utmost care and compassion. The NAC is unparalleled in everything they do. Do take Miriam's advice.
In the last issue of the NAC newsletter, there was a patient experience from David Turner who has CAPS. Whilst as an adult, his case is very different from your Grandson's it might be interesting for you to read. Here is the link:
https://www.ucl.ac.uk/amyloidosis/pdfs/nac_newsletter_8My very best wishes to you and your family for whatever lies ahead.