Hi Gary,
Many practical suggestions below to help you to find a way of less expensive travel to the NAC. We all have our different individual circumstances, personal struggles, trials, tribulations etc...
I have been an NAC patient since 2005. Travel costs from Dorset for my husband and me have risen considerably over the years. I always try to book as much in advance as possible because that seems to be the cheapest way. However being tied to specific times of trains which is cheaper doesn't always work that way. If you are delayed for reasons beyond your control or the opposite happens and you are able to catch an earlier train, than can incur a fine if the inspector happens to be a Jobsworth! Some will accept a reasonable explanation but others won't.
We have come to the conclusion that we try to do the best we can with the price of train travel. As I am so unwell, we have to take a taxi from Waterloo to The Premier Inn, which incurs extra unavoidable expense.
We are very grateful that our necessary overnight stay is funded by the NHS, because the NAC is a research centre too. We need the NAC as much as the NAC needs patients to further its world class research, which benefits all NAC patients and the amyloidosis community worldwide. We also greatly appreciate that with a rare disease I am an NHS patient at a World Centre of Excellence for amyloidosis. Many countries do not have the outstanding unparalleled specialist world class expertise which we have in the U.K. Everything for amyloidosis is free at the point of delivery to U.K. NAC patients. We, in addition to the Dutch, are the only amyloidosis patients worldwide, who are diagnostically tested and monitored with the SAP scan. The SAP scan is just one of the range of tests of thorough tests the NAC provides for patients. As we know, it is a very important part, because of the amount of information it provides for our Drs. I understand that the cost for international patients to have the 2/3 days of testing at the NAC can cost as much as £4-6,000. That might astonish you? We don't have to pay a penny!
Although it has become increasingly difficult for me to travel annually to the NAC because of rapidly declining health, I know I have to do it, because it is only at the NAC that there is are two very special Drs who understand my condition and what I am going through with my unprecedented very distressing symptoms. They both have taken a particular interest in my manifestation of AL amyloidosis. Their support, care, compassion and outstanding expertise are of huge importance to me. I am totally dependant on them in my hope one day to get a little better. So the cost of travel is a necessary part of what I have to do. Without the NAC there would be no hope for me. I think many NAC patients feel the same.
I hope your travel difficulties can be resolved so that you can continue to have access to only specialist expertise available in the U.K. for every type of amyloidosis. To me, the NAC feels like a private clinic because of the outstanding quality of care and specialist expertise and personal attention every NAC patient receives.
One last thing, every member of the NAC team is extremely nice in so many ways, too numerous to mention. I have frequently described them elsewhere so as to leave no-one in any doubt about the high esteem I have for everyone at the NAC. I often ask myself, where would I be without them?