Excerpts from a heartfelt message

“What is your definition of old?

“I am asking, no, I am begging and pleading for your help, not only for the answer to the above important question but also to help the young people under 65 in Scotland who are dying with dementia and other brain degenerative diseases, and who are being blatantly discriminated against because of an age on their birth certificate.”

“Frankie battled dementia with great strength, courage and dignity until the day he passed away and I found myself, and still find myself in a battle with bureaucracy to end the blatant discrimination which still exists as I write this letter to you.

“I remember writing to you and your office replied and mentioned Cosla. This will be the same Cosla which I am advised that after lengthy talks with the Scottish Government have now decided that ‘all people under the age of 65 with a terminal illness will not have to pay for their personal care ... in the last six months of their lives’.

“I along with others who have lost and are losing their loved ones find this statement extremely insensitive and insulting.

“In November 2013, no expert, no consultant, no doctor told us that Frankie would die in April 2014.

“Nor did any of these experts, consultants and doctors tell us that on Frankie’s 65th birthday on March 28 2014 that he would pass away 19 days later.”

“Frankie, like others under 65 who were, and are still dying with not only dementia but other terminal diseases did not, or do not need their personal care at the point of diagnosis.

“Frank’s Law is about giving these people free personal care when they are assessed as needing it. They need it for a shorter time than someone with a long term chronic condition.

“I see other vulnerable groups who are being helped financially by the Scottish Government.

“I understand that these groups need help as well. I certainly would have loved someone to have given Frankie a second chance of life.

“Frankie’s dementia was not self-inflicted. He would not have known when he was a young man that his job would ultimately cost him to lose his life so tragically.

“Are we then undervaluing the under-65s in Scotland? It would appear so.”