My story in brief is that I have suffered from obesity from the age of 5 years old and at the age of 31 and 17 ½ stone I had a gastric fitted privately. I had been granted the funding from the pct but my sister paid for me to have it fitted privately as it would have taken over 2 years for the NHS to perform the operation. Unfortunately, in 2003, 2 years after the band was fitted, it migrated into my stomach and had to be removed. This was through no fault of my own and it is still not known why this happens. I was given Reductil for a number of years but I became immune to it and since then, I have gained weight rapidly. It is inevitable I will carry on gaining weight as the only way I was able to lose weight was with restriction. Here lies the problem. My local pct sent me for an assessment at UCL last year and the report came back that I should have a proximal bypass but my pct are now refusing to fund for it. They require me to reach a BMI of 50 (21 stone for someone of my height and 3 1/2 stone heavier than I was before my gastric band) plus have other conditions such as diabetes or high blood pressure.
I have found out that there is a fundamental flaw in not only their policies but within NICE as well. There are no UK policies/guidelines for people in my situation. i.e. who have had a gastric band which had to be removed and are now gaining weight again. I find this absolutely ridiculous as it is inevitable that we will gain weight again once the restriction the band gave us has gone. The weight may have gone but we are far from cured as restriction is the only tool which has enabled us to lose weight. I am even more annoyed that East Berks pct have made their own agenda and require people to reach a BMI of 50 plus have other conditions. This is very dangerous to people’s health and will no doubt cause diabetes, high blood pressure and heart disease. This is not to mention the much greater risk of death on the operating table if people are forced to gain so much weight before help is given.
I met with the pct in May, they told me they had a clear pathway for obesity but when I asked them what provisions there are for people who have been through this, they were not able to give me an answer. The only thing they asked is if my dr had referred me to a psychologist! What kind of country are we living in when there is a very clear need for help to be given to people who have suffered all their life from obesity and no traditional method has worked to help them lose the weight? As far as I am concerned, it is not only a fine example of a postcode lottery but also an example of a gap in policies. West Berkshire pct appear to follow NICE guidelines and only require people to reach a BMI of 40 before they would give help. If I lived 8 miles down the road I would soon be having my surgery.
I am not the only person who has had a gastric band taken out due to complications but in East Berkshire, previous history seems to account for nothing and even though the evidence is there in my case that I am gaining weight at a very fast rate, the pct simply don’t seem to care at all. I am speechless with their policies and also with the fact that there just aren’t any UK policies for people like me.
I have contacted ICAS and have made a formal complaint against East Berkshire PCT as I honestly feel they are more interested in dealing with the resulting diseases caused by obesity rather than helping before these diseases can take hold. As of yet, I have not had a reply from East Berkshire PCT which is satisfactory.
I am very aware I have the right to appeal to the pct but I am waiting for another report from UCLH before I do so as I know this is my last chance to try to get them to fund for my surgery. At my last case review (number 5) I was able to send in a back specialist report which gave full backing for the surgery and a dr’s report showing I now have IGT along with a social workers report (my son has special needs). All of which were not good enough for the pct.
My ultimate goal is to try to get some form of guidelines put in place for people in my situation but alas, finding who and where to write to has become more of a mission for me rather than a pastime. I cannot believe my pct do not take the human element into account but if there are no guidelines in place, how can they make an informed decision?
So there we have it, that's my story so far. Life is prety naff to be honest. I have put all my weight on around my abdomen area as it doesn't have the hanging down skin to collect in any more and this is causing me a lot of pain. I ache constantly around this area and the surgeon has said it's probably my abdomen wall stretching. Great! I wish the board at the pct could live my life for one day to experiencec what it is like living in this awful shell.
I have found out that there is a fundamental flaw in not only their policies but within NICE as well. There are no UK policies/guidelines for people in my situation. i.e. who have had a gastric band which had to be removed and are now gaining weight again. I find this absolutely ridiculous as it is inevitable that we will gain weight again once the restriction the band gave us has gone. The weight may have gone but we are far from cured as restriction is the only tool which has enabled us to lose weight. I am even more annoyed that East Berks pct have made their own agenda and require people to reach a BMI of 50 plus have other conditions. This is very dangerous to people’s health and will no doubt cause diabetes, high blood pressure and heart disease. This is not to mention the much greater risk of death on the operating table if people are forced to gain so much weight before help is given.
I met with the pct in May, they told me they had a clear pathway for obesity but when I asked them what provisions there are for people who have been through this, they were not able to give me an answer. The only thing they asked is if my dr had referred me to a psychologist! What kind of country are we living in when there is a very clear need for help to be given to people who have suffered all their life from obesity and no traditional method has worked to help them lose the weight? As far as I am concerned, it is not only a fine example of a postcode lottery but also an example of a gap in policies. West Berkshire pct appear to follow NICE guidelines and only require people to reach a BMI of 40 before they would give help. If I lived 8 miles down the road I would soon be having my surgery.
I am not the only person who has had a gastric band taken out due to complications but in East Berkshire, previous history seems to account for nothing and even though the evidence is there in my case that I am gaining weight at a very fast rate, the pct simply don’t seem to care at all. I am speechless with their policies and also with the fact that there just aren’t any UK policies for people like me.
I have contacted ICAS and have made a formal complaint against East Berkshire PCT as I honestly feel they are more interested in dealing with the resulting diseases caused by obesity rather than helping before these diseases can take hold. As of yet, I have not had a reply from East Berkshire PCT which is satisfactory.
I am very aware I have the right to appeal to the pct but I am waiting for another report from UCLH before I do so as I know this is my last chance to try to get them to fund for my surgery. At my last case review (number 5) I was able to send in a back specialist report which gave full backing for the surgery and a dr’s report showing I now have IGT along with a social workers report (my son has special needs). All of which were not good enough for the pct.
My ultimate goal is to try to get some form of guidelines put in place for people in my situation but alas, finding who and where to write to has become more of a mission for me rather than a pastime. I cannot believe my pct do not take the human element into account but if there are no guidelines in place, how can they make an informed decision?
So there we have it, that's my story so far. Life is prety naff to be honest. I have put all my weight on around my abdomen area as it doesn't have the hanging down skin to collect in any more and this is causing me a lot of pain. I ache constantly around this area and the surgeon has said it's probably my abdomen wall stretching. Great! I wish the board at the pct could live my life for one day to experiencec what it is like living in this awful shell.
