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Prader Willi Syndrome
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<blockquote data-quote="Marguerite" data-source="post: 203099" data-attributes="member: 1991"><p>Lizzie, I have no personal knowledge of the health system in your area, but from what you describe it doesn't sound good. You're right, you DO need a multidisciplinary team. failing that, you can make your own team (which is pretty much what I need to do for my own health issues; husband is in the same boat but has his own different team).</p><p></p><p>What ALL good health teams need is the spider in the centre of the web. In most cases, this is the GP. A GOOD one. I know that a health system which divides people into areas and pays them according to how fast they can process people through, is not conducive to this. However, you can still be lucky sometimes. To get what you need, you need to give the doctor what HE needs. I can only give an estimate, but I suspect what your doctors value, is anything that can speed up the consultation process. From my own experience, a tricky case that is going to take time to hear the story, isn't welcomed by the sort of GP who just reaches for his prescription pad as you walk through the door.</p><p></p><p>If your current GP isn't too keen to actually do the work, and you can't change to a different GP, then you will have to somehow turn this GP into one who will become the spider. If you are seeing GPs in a clinic environment and this means it's pot luck according to which GP you get to see, you could TRY to request the GP of your choice. You will still be restricted to the range of doctors on duty, but it's a start. Over time, they will get to know you.</p><p></p><p>Next step - keep a diary. Before you go to the doctor, summarise the problems concerning you into a single sheet of paper, preferably no more than three questions. If you have more than three, pick the most important three and note that there ARE more but you're saving them for a later date.</p><p></p><p>Keep it streamlined as much as possible. And no matter how tempting, don't rant at them - it loses time. Your main aim is the important one - to get help for your son. At each appointment, watch the time, don't overstay your welcome and stick to your agenda. If you need to, come back next day, and the day after, for the same short time, and keep plugging for answers. Be politely persistent.</p><p></p><p>At first the doctor is likely to try the "take two aspirin and call me in the morning" routine. So if you can see that your five minutes is up, then go away and do just that. Do what he asks, to show willing. Demonstrate that you will do your bit. It's annoying, it's frustrating, but worth the trouble. because you then go back and request the same doctor (if you can). Go in with your little scrap of paper and three questions. The scrap should begin with, "You advised X, we have done X. We observed Y. The following questions include Z number of my initial three that remain unanswered. I am desperate to get help for my son - I need a good GP to help me do this. Please help me."</p><p></p><p>It could take some time but you need to continue, to persist with the same people. At some stage the GP may very much value a detailed summary of his medical history. Again, put it in writing, keep it concise and include anything of relevance. List names, dates, places. If you have copies of letters from specialists and test results, attach those as an appendix. </p><p></p><p>At some point, the GP (if he eventually picks up the ball and runs with it) will make contact with the endocrinologist and the lady doctor in paeds. He will require written reports, but may have to settle for verbal reports from people. But a good GP will keep notes in your son's file. </p><p></p><p>If your own point of view of the endocrinologist is borne out by the GP's own opinion, then maybe the GP will be in a better position to find an alternative for you. Certainly he should have more power, more contacts.</p><p></p><p>This is a process which takes time - housetraining a GP and setting up a working spiderweb - but any improvement has got to help. Right now, you sound like you're being given the Royal Order of the Runaround.</p><p></p><p>What I suggest should help at least later, and hopefully sooner. And if it doesn't help, then at least it sets up a much more effective paper trail of solid evidence that you can take to your local MP to get him to "prod buttock". Preferably with steel-capped boots, preferably borrowed form Lotte Lenya. ("From Russia With Love" - oldie but goodie James Bond film with Sean Connery).</p><p></p><p>Marg</p></blockquote><p></p>
[QUOTE="Marguerite, post: 203099, member: 1991"] Lizzie, I have no personal knowledge of the health system in your area, but from what you describe it doesn't sound good. You're right, you DO need a multidisciplinary team. failing that, you can make your own team (which is pretty much what I need to do for my own health issues; husband is in the same boat but has his own different team). What ALL good health teams need is the spider in the centre of the web. In most cases, this is the GP. A GOOD one. I know that a health system which divides people into areas and pays them according to how fast they can process people through, is not conducive to this. However, you can still be lucky sometimes. To get what you need, you need to give the doctor what HE needs. I can only give an estimate, but I suspect what your doctors value, is anything that can speed up the consultation process. From my own experience, a tricky case that is going to take time to hear the story, isn't welcomed by the sort of GP who just reaches for his prescription pad as you walk through the door. If your current GP isn't too keen to actually do the work, and you can't change to a different GP, then you will have to somehow turn this GP into one who will become the spider. If you are seeing GPs in a clinic environment and this means it's pot luck according to which GP you get to see, you could TRY to request the GP of your choice. You will still be restricted to the range of doctors on duty, but it's a start. Over time, they will get to know you. Next step - keep a diary. Before you go to the doctor, summarise the problems concerning you into a single sheet of paper, preferably no more than three questions. If you have more than three, pick the most important three and note that there ARE more but you're saving them for a later date. Keep it streamlined as much as possible. And no matter how tempting, don't rant at them - it loses time. Your main aim is the important one - to get help for your son. At each appointment, watch the time, don't overstay your welcome and stick to your agenda. If you need to, come back next day, and the day after, for the same short time, and keep plugging for answers. Be politely persistent. At first the doctor is likely to try the "take two aspirin and call me in the morning" routine. So if you can see that your five minutes is up, then go away and do just that. Do what he asks, to show willing. Demonstrate that you will do your bit. It's annoying, it's frustrating, but worth the trouble. because you then go back and request the same doctor (if you can). Go in with your little scrap of paper and three questions. The scrap should begin with, "You advised X, we have done X. We observed Y. The following questions include Z number of my initial three that remain unanswered. I am desperate to get help for my son - I need a good GP to help me do this. Please help me." It could take some time but you need to continue, to persist with the same people. At some stage the GP may very much value a detailed summary of his medical history. Again, put it in writing, keep it concise and include anything of relevance. List names, dates, places. If you have copies of letters from specialists and test results, attach those as an appendix. At some point, the GP (if he eventually picks up the ball and runs with it) will make contact with the endocrinologist and the lady doctor in paeds. He will require written reports, but may have to settle for verbal reports from people. But a good GP will keep notes in your son's file. If your own point of view of the endocrinologist is borne out by the GP's own opinion, then maybe the GP will be in a better position to find an alternative for you. Certainly he should have more power, more contacts. This is a process which takes time - housetraining a GP and setting up a working spiderweb - but any improvement has got to help. Right now, you sound like you're being given the Royal Order of the Runaround. What I suggest should help at least later, and hopefully sooner. And if it doesn't help, then at least it sets up a much more effective paper trail of solid evidence that you can take to your local MP to get him to "prod buttock". Preferably with steel-capped boots, preferably borrowed form Lotte Lenya. ("From Russia With Love" - oldie but goodie James Bond film with Sean Connery). Marg [/QUOTE]
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