The logistics of poorly

It has become apparent to me over the last few months taking care of TP that where chronic severe illness is concerned one is required to have skills way and above those of a good bedside manner and a strong stomach!

The N.H.S. is fantastic in many ways, the knowledge and excellence of the professionals is second to none,the care shown by nursing staff is the same and the facilities, even in this age of complaining that nothing is ever good enough are pretty phenomenal for a service, which at the point of delivery is free.

However, trying to negotiate and manage all of this has become a full time job for me and one which if there were a job description might include;

An ability to communicate at all levels, at least three years management experience in a similar role, administration skills, a degree in pharmacology, an understanding of oncology and physiology, enjoy working under pressure and in a challenging environment and ability to work well alone or as part of a team.

This is not a complaint, if there is someone in my position to do this stuff then why should N.H.S resources be used when they could instead be available to fund more critical care to someone else, but I do wonder how anyone, elderly and or very ill without support, might manage to co-ordinate the numerous necessary services and appointments that it is required to negotiate for appropriate care to be delivered.

I have a file over an inch thick now of associated paperwork all at some stage of action, spreadsheets for drugs and chemo. regimes, lists of people I need to call for various reasons, references for reading I need to find time for to better understand what I am dealing with and consequently not mess up badly or dangerously and appointments requiring attending....and each two hour appointment in reality is a whole day once the travelling and waiting times are taken into consideration.

And I thought I was unemployed! I may not be salaried but the reality is that whilst the service delivered by the health authority is, from a medical point of view pretty amazing, the majority of the time I am left to my own devices with half knowledge trying to manage a situation that I am far from qualified to understand and which requires I make decisions, that if I mess up could be at lest life-altering for TP.