I really do feel sorry for them!
During one of my telephone conversations with Geraint about the NG tubes he suddenly decided to quiz me about what Hari eats. Now admittedly I wasn't exactly forthcoming in my response but that is because I had already given them this information - the repeated inquisitions were getting boring!
I am sure that the dieticians would love to give us accurate advice and recommendations with regard to Hari's diet but they are not in a position to do so. As I've said before, they cannot advise responsibly whilst there is no diagnosis for the undiagnosed. They would be required to follow policies which would result in their advice being harmful to Hari. The policies, which take no account of individual need, decree that pre-prepared nutritional feeds must be used. They will not and cannot deviate from these policies without a diagnosis for the undiagnosed - so until the doctors decide to diagnose the dieticians are being prevented from advising accurately and appropriately and will be forced to recommend the pre-prepared nutritional feeds.
Well Hari's doing very well without them thank you!
So this week we received a letter in the post from the dietician's department.
The letter requests my 'permission' for the dieticians to review Hari's nutritional status and feeding equipment needs. Her equipment needs have very recently been ascertained and organised. I have already explained her nutritional status, emphasising that the changes we have made have resulted in her health improving and in Hari being pain free for the first time in five years.
They have even, very kindly, included a tear off slip at the bottom of the letter for me to sign and date. On this slip I should apparently indicate whether or not I agree to such a review.
We wonder exactly who has decided to send this letter - and why.
Hari has decided that she will respond to this letter herself.............just as soon as she manages to stop laughing!