tag:blogger.com,1999:blog-4568034298343558962.post6473819399568500657..comments2024-03-28T09:16:33.241+00:00Comments on Diary of a Benefit Scrounger: The NHS Code of SilenceSue Marshhttp://www.blogger.com/profile/14849801822216267250noreply@blogger.comBlogger14125tag:blogger.com,1999:blog-4568034298343558962.post-80987020976422581642014-05-15T11:44:49.310+01:002014-05-15T11:44:49.310+01:00Sue - you might be interested in this case in NZ -...Sue - you might be interested in this case in NZ - perhaps similar to yours. Sarah went public about her harrowing time dealing with Work & Income/Ministry for Social Development which pays benefits. In her latest piece she reveals why she is so sick<br />http://www.stuff.co.nz/nelson-mail/opinion/columnists/10043453/Bug-that-changed-my-lifeMarianne Hepplenoreply@blogger.comtag:blogger.com,1999:blog-4568034298343558962.post-82372802190066218472014-05-12T01:52:23.348+01:002014-05-12T01:52:23.348+01:00Yeah, what Sue says! It shouldn't be, but is, ...Yeah, what Sue says! It shouldn't be, but is, more the exception than the rule that we get medics who treat us as having an equal stake in the conversation. My Pain Management people put every other doctor and all bar one physio I've dealt with in 25 years to shame for talking to me as an adult, and an expert patient - and they're far more effective because of it. DavidGhttps://www.blogger.com/profile/11734028655032503805noreply@blogger.comtag:blogger.com,1999:blog-4568034298343558962.post-42410994081366392062014-05-11T16:35:05.715+01:002014-05-11T16:35:05.715+01:00Sue I love you. Are we looking at these problems f...Sue I love you. Are we looking at these problems from the wrong direction. Instead of paying benefits why don't we give everyone a basic living income? It can be done, just needs to turn a few ideas on its head, and should be the major policy of at least one political party. We all have enough cash, we all spend that cash every month. What goes in comes around and goes out again - simple. There's lots of ways to explain this but http://basicincome.org.uk/opinions/2014/02/fund-universal-basic-income-without-scaring-horses/ this guy does a good job.Trevor Lockwoodhttp://www.trevorlockwood.comnoreply@blogger.comtag:blogger.com,1999:blog-4568034298343558962.post-91299413523371566012014-05-11T13:12:07.924+01:002014-05-11T13:12:07.924+01:00Sorry Bill. It's suey2y@gmail.com. Nutrition n...Sorry Bill. It's suey2y@gmail.com. Nutrition not the problem - 30 years has led me to read a thing or two myself ;) Short bowel syndrome the problem - oddly, I'm permanently dehydrated and need to LIMIT my fluids!! You can google it, it's fascinating and answered LOT of questions I've had for years. Sue Marshhttps://www.blogger.com/profile/14849801822216267250noreply@blogger.comtag:blogger.com,1999:blog-4568034298343558962.post-41104157230072848982014-05-11T10:36:53.245+01:002014-05-11T10:36:53.245+01:00I went to my ESA appeal in front of a judge & ...I went to my ESA appeal in front of a judge & a doctor.<br />The doctor asked me a couple of totally relevant questions, looked at the judge, nodded and I was told I had won my appeal. This doctor knew exactly what she needed to clarify from me, & understood.<br />I wish my own doctors understood me as well as she did - a few minutes, but knowing the subject makes all the difference!MWhttps://www.blogger.com/profile/14418700311460432076noreply@blogger.comtag:blogger.com,1999:blog-4568034298343558962.post-79847067377152875752014-05-10T23:11:11.649+01:002014-05-10T23:11:11.649+01:00You should consider this when you consider what to...You should consider this when you consider what to eat http://www.theguardian.com/film/2014/may/10/sugar-is-the-enemy-film-challenges-obesity-myths-fed-up A great book for you to read would be Deep Nutrition by Catherine (Dr. Cate) Shanahan. If you're pooing out what you're putting in that suggests to me you should be eating less in terms of volume and more in terms of nutrition. You remember we were talking about electrolytes? People say coconut water's the thing and you can get it cheap usually on www.approvedfood.co.uk. And I still don't have your email! xxBig Billhttps://www.blogger.com/profile/18373906955091066795noreply@blogger.comtag:blogger.com,1999:blog-4568034298343558962.post-7221968813261315282014-05-10T23:00:14.161+01:002014-05-10T23:00:14.161+01:00The good old days of good surgeons i find are over...The good old days of good surgeons i find are over' doctors much more so most often leaving me as the doctor <br /><br />personally i find them all a waste of time as their overall knowledge is so basic it's hard to even believe their even qualified in most cases <br />talk about money for old rope <br /><br />the only thing in my 25 year relationship with my dr is he never asks any questions just what do you wont and that's about it Nickhttps://www.blogger.com/profile/10124601639681931119noreply@blogger.comtag:blogger.com,1999:blog-4568034298343558962.post-65129677933416244822014-05-10T21:51:30.400+01:002014-05-10T21:51:30.400+01:00Great post Sue. So many people are just not articu...Great post Sue. So many people are just not articulate enough or empowered to do their own research or just plain assertive enough, when seeing any doctors, and then when you are one of those who can fight your own corner, often it's when you're so utterly down with your illness(es), it's really hard & exhausting to stand your ground. I'm reduced to tears too easily, get far too emotional very quickly with any medics. I am so pleased to hear you came into contact with Dr Unique - is it possible to have him as your consultant?? (Seem to remember you losing GP & consultant about the same time not too long ago..) xxdiabolical mehttps://www.blogger.com/profile/11906298477584927507noreply@blogger.comtag:blogger.com,1999:blog-4568034298343558962.post-41028161032981395172014-05-10T16:17:08.423+01:002014-05-10T16:17:08.423+01:00My GP (who is the best of my local bunch) copes wi...My GP (who is the best of my local bunch) copes with me being asertive and articulate by not talking to me.<br />Lornahttps://www.blogger.com/profile/01314427507584427965noreply@blogger.comtag:blogger.com,1999:blog-4568034298343558962.post-68835195198445917482014-05-10T14:52:18.035+01:002014-05-10T14:52:18.035+01:00This is the kind of doctor we need, but why are th...This is the kind of doctor we need, but why are there apparently so few of them, I wonder. I avoid any doctor as much as possible (my chronic illness is under control) because they will not treat me as an equal. I've longed to have an intelligent discussion with a doctor but it seems impossible. So glad you've managed to have one!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4568034298343558962.post-49411248150153950932014-05-10T11:46:22.603+01:002014-05-10T11:46:22.603+01:00I know from personal experience, having had a 20 y...I know from personal experience, having had a 20 year journey to find such a person, that the feeling of equal joy and shock when a doctor 'gets' your condition is amazing and scary at the same time. When they're willing to talk to you as an adult, and don't insist you're imagining it all as with va's cousin, or don't let their nose get put out of joint when you try to explain the knowledge/insight you have of your own health, as ronsrants says, then, well, that's most definitely unique. I'm glad that you found such a rare species ... and I hope you're able to keep hold of him.Just Mehttps://www.blogger.com/profile/05404370744440643856noreply@blogger.comtag:blogger.com,1999:blog-4568034298343558962.post-70595447315522972262014-05-10T11:31:51.622+01:002014-05-10T11:31:51.622+01:00Hmm . . . You're right, he might well be uniqu...Hmm . . . You're right, he might well be unique.<br /><br />I was diagnosed with Addison's over a year ago while in hospital, close to death after months of starvation, vomiting and diarrhoea. A pity no-one told me!<br /><br />Finally figured it out back in March (exactly a year on from diagnosis), wrote a long letter to my GP asking him to confirm it (turned out he'd overlooked it in my discharge notes!). <br /><br />He wrote back confirming Addison's - I then had to fight him for the appropriate medication which took another month! - and he said that as I clearly knew more than he did about Addies, there was nothing he could really help me with. <br /><br />Truth to tell, I know more than he does about everything that's wrong with me - and that's a hell of a lot (11 separate conditions, about half of them fatal) - because I have more time for research than he does, but does he capitalise on that knowledge to our mutual benefit? No - he deeply resents it. So we both lose, especially me.<br /><br />OK - rant over :-)Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4568034298343558962.post-77326220992346331942014-05-10T11:16:34.712+01:002014-05-10T11:16:34.712+01:00va - my kids give me more joy than anything else i...va - my kids give me more joy than anything else in the world. I know for sure that the time your cousin spent with your kids was so special to her. We all think we didn't do enough, but sometimes we just don't know how much we actually did xxSue Marshhttps://www.blogger.com/profile/14849801822216267250noreply@blogger.comtag:blogger.com,1999:blog-4568034298343558962.post-49547526871342946862014-05-10T11:04:31.663+01:002014-05-10T11:04:31.663+01:00That sounds so much like what my cousin suffered t...That sounds so much like what my cousin suffered through. As she was alone and single and depressed she had the added difficulty of convincing doctors it was not @£@$@%@%@%@%@ all in her mind. She was only 4'8 anyway and never fat and after various operations had constant pain, poo and was so thin her arms were like fragile sticks. But this was in the 60s and 70s when even fewer doctors knew even less about Crohn's. <br /><br /> I am so sorry she was not articulate enough to tell me how it was. I'm understanding better now because of you and wish I'd known. Only comfort is she did love visiting us and being with my kids. And I did love her and visit her too. Not often enough though.<br /><br />I hope what sound like small things to be able to do to make things better will work well and improve your life. xxvahttps://www.blogger.com/profile/06405627048981592665noreply@blogger.com