The ICS relies almost exclusively on charitable donations and does sterling work in providing a highly informative helpline, free night nursing to end of life patients being cared for at home, and in supporting research to find cures for this highly resistant disease.
It is not the role of the ICS to make decisions on who is eligible for hardship grants and how much they should be paid.
This is potentially a bottomless pit which the charity cannot be expected to fund.
It would be far more appropriate if the government looked after its citizens in their hour of need, as they face difficult treatments which will not always, unfortunately, cure their life threatening illness.
There are very simple measures which could be put in place including provision of a medical card without major quibble, travel or petrol vouchers to allow for the considerable expenses incurred on daily round trips to hospital and a tax credit to offset costs such as overnight stays and hospital car park charges.
There is also a very strong case to be made for a paid leave allowance for employees caring for their very ill parent, child, partner or sibling, particularly where protracted treatments, recurences and end of life situations occur.
Many employers can be understanding and flexible in these situations.
But a formalised arrangement, with a set number of paid leave days a year, would be of enormous benefit to parents, partners and siblings who need to be with their ill relative at times of particular crisis.
As we celebrate our coming of age as a nation, let our government mark the year by setting in train the above measures.