Hi Jon
I have been living with amyloidosis for 12 years. I would prefer not to have it but there isn't anything I can do about that! So we get on with a modified life. My treatment has been fantastic but a bit frustrating at times. One of the difficulties is that amyloidosis is still unknown to the majority of people and has cause some difficulties as it still doesn't appear on some call centre checklists. It also causes medical issues that dont fit standard questionnaires and regulations change. Conditions notifiable to the DVLA seemed to change at one point and it was unclear whether I needed to tell the DVLA. Their forms made assumptions that fitted the majority but I couldn't answer the questions they asked - I had been treated in four different hospitals by three different professors and two consultants and they wanted to know what my GP thought. Al. was resolved in the end and I still have my driving licence.
The reason I have gone through all this is to say that life has changed, it is very frustrating, the NHS is not joined up at times and takes a bit of navigating.
I have had brilliant service from my GP practice. In recent years I haven't seen a doctor very often but we have a fantastic practice pharmacist, nurse practitioners and health care assistants. The have been a great source of advice on how to get the best from the NHS. I cant walk very far and my condition did not seem to fit the blue badge criteria - until the practice nurse told me how to fill the form in.
With respect to your question have you checked.
https://services.nhsbsa.nhs.uk/check-for-help-paying-nhs-costs/startIf that doesn't help you try talking to your GP practice.
Good luck
Richard
