From the CoeliacUK page: http://www.coeliac.org.uk/news/newsnight-report-on-the-cost-to-the-nhs-of-gluten-free-prescriptions
Very bad form on behalf of the BBC who claim that they offer viewers unbiased information where possible. However, they denied an alternative point of view on the issue of offering Coeliac suffers staple foods through the NHS.
If you made a choice to smoke and now want to quit, you can get help from the NHS which can cost millions for the taxpayer. And this is not a one-hundred percent guarantee you will quit. If you are unfortunate enough to have an autoimmune disease where even being near bread or pasta makes you ill and you cannot afford to pay the huge mark-up for niche goods just to have a staple diet? Well, you are a leech to the system according to the views put forward on Newsnight.
As a full-time University student, who at current has two jobs, I still struggle to maintain a balanced diet. The bread on sale in supermarkets for Coeliac's is just plain awful. Each one I have tried has the same texture as a stale English muffin and tastes just the same. I am not being picky about my bread either. My girlfriend, when we first started talking about my diet many months ago, could not understand why I didn't buy the Gluten-Free bread at the supermarket. No amount of discussion could make her see so I went out and bought some bread so we could have it with our soup. One bite into her piece and all was clear. And if you want to make rolls for you lunch you have to pay £2.50 or more just for four.
A claim was put forward in the show that Coeliac suffers should simply not eat food with gluten in it. This is just plain ignorance. That is an extremely difficult thing to do. And you will get caught out. For example I used to have Bisto gravy on my roast chicken and potatoes on Sundays as Bisto did not contain wheat. Then one day I had the same meal I have had for two-three years and I was ill. I checked the back of my new Bisto and was mortified to see that wheat was now an ingredient. The only gluten-free gravy in the supermarket is one made by Knorr but you'll be very lucky to even spy it on the shelves in your supermarket. Bisto Best does not contain wheat as an ingredient but is made in a factory line that handles wheat. For some Coeliac suffers this is fine but I cannot walk into a Greggs to buy a bottled drink without getting a headache.
I have contacted the BBC and the Newsnight team, as have other Coeliacs. So, if anybody even gleams at this blog, do not take heed of what was said on Newsnight. It was poor journalism which turned unwarranted negative attention towards a group of people who struggle to even maintain what others would call a normal life.
Friday 25 May 2012
Sunday 20 May 2012
Introduction
Hello, this is my first post on here. For this I'll just give you a brief description of myself and my four years of living with Coeliac disease.
To start with I am currently twenty-six years old and I first became ill just over four years ago when I was working for a technical support company who ran the tills of a popular fast-food chain in the United Kingdom. The job involved a lot of shift work with some days not finishing until 1am and then having to come back into work at 8am a few hours later. I was quite fit at the time as I had, only a few months before, worked for a large DIY company for a few years running two different departments. It was very physical work and if it were not for the constant customer presence it would have been a great job. Anyway, I started to get quite poorly at this new job and was constantly having to see my GP. I was in a lot of intense pain, mainly in my stomach area, and suffered from catastrophically loose motions at the most inconvenient of times. It soon became impossible to continue working with this company and, at my GPs advice, I handed in my notice with the intention of finding employment elsewhere as soon as possible. This did not happen as I spiralled down further to the point where I became too afraid to eat anything. And if you do not eat you do not get energy. The pain was dulled when I did not eat, hunger being preferable to what felt like hundreds of tiny ninjas trying to escape from my stomach. I had to sign on to jobseekers to try and keep up with my bill payments. My GP soon became fed up with my constant visits and requests for help. I had so many blood tests I thought they were simply trying to make a brand new version of me. They couldn't find anything so my GP brushed me off with an IBS diagnosis and referred me to a gastro-enterologist. And they don't play nice. They stick things where things should never, ever be stuck. I was so frail that they were convinced I had Crohn's Disease and quite frankly that scared the crap out of me, not that it needed any encouragement.
Not once did anybody think to have me tested for Coeliac. I even requested a wheat allergy test and was denied. I got the impression that I was simply wasting their time. I had symptoms yet they couldn't figure out why. When I went to the GP after the IBS brush off I was treated as if I had done something wrong. They even gave me anti-depressants as I complained of lethargy. I complained once of a water infection as I had the uncontrollable need to urinate 37 times in one day. I was told that I was "the wrong gender and age" to have an infection and politely told not to waste their time. And that was that. I lost all faith. I went it alone.
At this point I didn't know what was making me ill all the time and I had no reference. I decided I needed a goal so I applied to go to University. I was at this point twenty-three years old so slightly older than the average University student. But my mum supported me with this and gave me the encouragement I needed. My dad and step-mum were also quite proud. Sometimes all you need is a little support to push you forward. To fund this I sought the help of my local Job Centre who simply said I was too ill to work. I found out that the local council help people get back into work after periods of illness so circumvented the Job Centre and spoke to the people at PCMI in Cosham. They usually only accept people who are referred to them but after chatting to a nice lady there they offered their help to me. They also believed I was still too ill to work but I needed to try.
After some confidence building, as I felt utterly useless compared to what I was like before, they managed to secure me an interview! It was with Portsmouth City Council working Saturdays at North End Library. This was perfect for me as I have a passion for books, the environment was good for me to get back into work with and I could do it around University. After a dire interview I actually managed to get the job. And a week later I was told I was accepted into Brighton University. And there we go, I lied and that wasn't very brief at all. And I don't expect anybody to actually have the patience to have read that either. It's now four years since I first became ill. I am coming up to the end of my University degree where I had to commute 100miles a day to attend two hour lectures or seminars. I have now two jobs within the Library Service; my original one at North End and weekday hours at the new library in Southsea. I am living with my girlfriend and with her help we have eliminated almost all wheat from our diets. I have returned to doctor's surgery with a new GP and have started the process of trying to get my illness officially diagnosed.
It's not easy but I'm getting there! :)
To start with I am currently twenty-six years old and I first became ill just over four years ago when I was working for a technical support company who ran the tills of a popular fast-food chain in the United Kingdom. The job involved a lot of shift work with some days not finishing until 1am and then having to come back into work at 8am a few hours later. I was quite fit at the time as I had, only a few months before, worked for a large DIY company for a few years running two different departments. It was very physical work and if it were not for the constant customer presence it would have been a great job. Anyway, I started to get quite poorly at this new job and was constantly having to see my GP. I was in a lot of intense pain, mainly in my stomach area, and suffered from catastrophically loose motions at the most inconvenient of times. It soon became impossible to continue working with this company and, at my GPs advice, I handed in my notice with the intention of finding employment elsewhere as soon as possible. This did not happen as I spiralled down further to the point where I became too afraid to eat anything. And if you do not eat you do not get energy. The pain was dulled when I did not eat, hunger being preferable to what felt like hundreds of tiny ninjas trying to escape from my stomach. I had to sign on to jobseekers to try and keep up with my bill payments. My GP soon became fed up with my constant visits and requests for help. I had so many blood tests I thought they were simply trying to make a brand new version of me. They couldn't find anything so my GP brushed me off with an IBS diagnosis and referred me to a gastro-enterologist. And they don't play nice. They stick things where things should never, ever be stuck. I was so frail that they were convinced I had Crohn's Disease and quite frankly that scared the crap out of me, not that it needed any encouragement.
Not once did anybody think to have me tested for Coeliac. I even requested a wheat allergy test and was denied. I got the impression that I was simply wasting their time. I had symptoms yet they couldn't figure out why. When I went to the GP after the IBS brush off I was treated as if I had done something wrong. They even gave me anti-depressants as I complained of lethargy. I complained once of a water infection as I had the uncontrollable need to urinate 37 times in one day. I was told that I was "the wrong gender and age" to have an infection and politely told not to waste their time. And that was that. I lost all faith. I went it alone.
At this point I didn't know what was making me ill all the time and I had no reference. I decided I needed a goal so I applied to go to University. I was at this point twenty-three years old so slightly older than the average University student. But my mum supported me with this and gave me the encouragement I needed. My dad and step-mum were also quite proud. Sometimes all you need is a little support to push you forward. To fund this I sought the help of my local Job Centre who simply said I was too ill to work. I found out that the local council help people get back into work after periods of illness so circumvented the Job Centre and spoke to the people at PCMI in Cosham. They usually only accept people who are referred to them but after chatting to a nice lady there they offered their help to me. They also believed I was still too ill to work but I needed to try.
After some confidence building, as I felt utterly useless compared to what I was like before, they managed to secure me an interview! It was with Portsmouth City Council working Saturdays at North End Library. This was perfect for me as I have a passion for books, the environment was good for me to get back into work with and I could do it around University. After a dire interview I actually managed to get the job. And a week later I was told I was accepted into Brighton University. And there we go, I lied and that wasn't very brief at all. And I don't expect anybody to actually have the patience to have read that either. It's now four years since I first became ill. I am coming up to the end of my University degree where I had to commute 100miles a day to attend two hour lectures or seminars. I have now two jobs within the Library Service; my original one at North End and weekday hours at the new library in Southsea. I am living with my girlfriend and with her help we have eliminated almost all wheat from our diets. I have returned to doctor's surgery with a new GP and have started the process of trying to get my illness officially diagnosed.
It's not easy but I'm getting there! :)
Subscribe to:
Posts (Atom)