Post by Silly Yak on Feb 20, 2011 7:51:00 GMT
Posted by Jenny on 19/2/2011, 17:01:42
90.203.121.X
Hi everyone, I was diagnosed with celiac disease last year and had just about dug my head out of the sand and started looking forward positively to a life without wheat. Having trawled the internet for recipes and information, I had come to the conclusion that a gluten free diet isn’t impossible after all (even if you are a bit of a foodie at heart) and, whilst the cost of gluten free food is a bloody crime, at least you can get the basics on prescription. Besides, I’m stuck with it so I might as well rise to the challenge!
Having spent a small fortune accumulating flours, pasta, bread, a bread machine with gluten free programme, and an absolute age sourcing the above, I had been strictly gluten free for two weeks (apart from forgetting not to test the ordinary pasta by biting it once!) and was feeling very pleased with myself. I was in a position to sort out a prepayment certificate and visit the GP to tackle the prescription at last! I thought brown genius bread, brown rice pasta and some teff flour. Mentally taking a step closer to reclaiming my life from the celiac monster felt good and it gave me great pleasure to impress my consultant with this newfound positive attitude!
Words cannot express the disappointment I felt on reading that PCTs are now going to restrict prescriptions to longlife bread (they’d have to put it in through a tube!) and some rancid ready mixed flour gubbins or other! Would the people who sanction these changes like to spend a few weeks eating longlife bread (or indeed any diet restricted first by an illness and second by some penny pinching bureaucrat)? No, of course they wouldn’t, and let’s generously pray that they won’t have to because I wouldn’t even wish this disease on them!
Obviously I will sign your petition when the wording is finalised and I hope it will be used to good effect, but I have a very cynical view of politics and suspect that this was a “done deal” by the time any of us got wind of it and that it will soon be implemented countrywide.
I am also astounded by the attitude of some people on this board who do not get any food on prescription themselves, so do not feel the necessity to fight for the rights of those who rely on them! Perhaps we could all live on rice and potatoes but it’s not exactly practical in the modern world to carry a rice salad around with you everywhere, plus it might just get slightly boring after a while! How are families on benefits with sick young children going to cope with this? How many children will now have to take foul tasting longlife bread sandwiches to school instead of a decent sandwich or a slice of pizza like their friends? It puts me in mind of the regulation NHS glasses I used to take off every morning as my mother left me at the school gates – and I still have the lazy eye to prove it! Imagine the effect it will have on pensioners who struggle to meet the costs of heating and food as it is!
By way of my own little protest, I will be signing on for unemployment benefit next week (something I could have done last year but have managed without). I will get my prescriptions free for as long as possible and will also make it my business to never purchase so much as a headache pill without a prescription until I find work (could take a while for someone as long in the tooth as myself!). Besides, I won’t be able to afford them what with the cost of gf bread and pasta!
I’m sorry we meet under these circumstances. I assure you I do have softer less belligerent side and, in fact, instead of worrying about this at the moment, I should be utilising my softer side to persuade my daughter to have a blood test (she is not keen to say the least). I suffered three miscarriages and had difficulty conceiving without realising it was probably the result of celiac disease. What hope do I have of convincing her that she could avoid all that heartbreak by changing her diet now, when she will be treated in this way by the NHS? She wants to do an access course and go to university. How will students cope with the expense of this disease whilst already racking up extortionate debts for tuition and accommodation? I just hope the dreaded gene has given her a wide berth!
I’m sorry this has turned into a bit of a tome. I have lots of questions to post once I calm down (probably ones you’re all sick of hearing!).
Thanks for listening and keep well.
Jenny.
90.203.121.X
Hi everyone, I was diagnosed with celiac disease last year and had just about dug my head out of the sand and started looking forward positively to a life without wheat. Having trawled the internet for recipes and information, I had come to the conclusion that a gluten free diet isn’t impossible after all (even if you are a bit of a foodie at heart) and, whilst the cost of gluten free food is a bloody crime, at least you can get the basics on prescription. Besides, I’m stuck with it so I might as well rise to the challenge!
Having spent a small fortune accumulating flours, pasta, bread, a bread machine with gluten free programme, and an absolute age sourcing the above, I had been strictly gluten free for two weeks (apart from forgetting not to test the ordinary pasta by biting it once!) and was feeling very pleased with myself. I was in a position to sort out a prepayment certificate and visit the GP to tackle the prescription at last! I thought brown genius bread, brown rice pasta and some teff flour. Mentally taking a step closer to reclaiming my life from the celiac monster felt good and it gave me great pleasure to impress my consultant with this newfound positive attitude!
Words cannot express the disappointment I felt on reading that PCTs are now going to restrict prescriptions to longlife bread (they’d have to put it in through a tube!) and some rancid ready mixed flour gubbins or other! Would the people who sanction these changes like to spend a few weeks eating longlife bread (or indeed any diet restricted first by an illness and second by some penny pinching bureaucrat)? No, of course they wouldn’t, and let’s generously pray that they won’t have to because I wouldn’t even wish this disease on them!
Obviously I will sign your petition when the wording is finalised and I hope it will be used to good effect, but I have a very cynical view of politics and suspect that this was a “done deal” by the time any of us got wind of it and that it will soon be implemented countrywide.
I am also astounded by the attitude of some people on this board who do not get any food on prescription themselves, so do not feel the necessity to fight for the rights of those who rely on them! Perhaps we could all live on rice and potatoes but it’s not exactly practical in the modern world to carry a rice salad around with you everywhere, plus it might just get slightly boring after a while! How are families on benefits with sick young children going to cope with this? How many children will now have to take foul tasting longlife bread sandwiches to school instead of a decent sandwich or a slice of pizza like their friends? It puts me in mind of the regulation NHS glasses I used to take off every morning as my mother left me at the school gates – and I still have the lazy eye to prove it! Imagine the effect it will have on pensioners who struggle to meet the costs of heating and food as it is!
By way of my own little protest, I will be signing on for unemployment benefit next week (something I could have done last year but have managed without). I will get my prescriptions free for as long as possible and will also make it my business to never purchase so much as a headache pill without a prescription until I find work (could take a while for someone as long in the tooth as myself!). Besides, I won’t be able to afford them what with the cost of gf bread and pasta!
I’m sorry we meet under these circumstances. I assure you I do have softer less belligerent side and, in fact, instead of worrying about this at the moment, I should be utilising my softer side to persuade my daughter to have a blood test (she is not keen to say the least). I suffered three miscarriages and had difficulty conceiving without realising it was probably the result of celiac disease. What hope do I have of convincing her that she could avoid all that heartbreak by changing her diet now, when she will be treated in this way by the NHS? She wants to do an access course and go to university. How will students cope with the expense of this disease whilst already racking up extortionate debts for tuition and accommodation? I just hope the dreaded gene has given her a wide berth!
I’m sorry this has turned into a bit of a tome. I have lots of questions to post once I calm down (probably ones you’re all sick of hearing!).
Thanks for listening and keep well.
Jenny.