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BEWARE - DANGER- CAVEAT Hi, PLEASE READ The Times article on co payment in the NHS whichcan be found at: (If you press down trl and then click on the URL it will open in another window) http://www.kidneycancerresource.com/ind ... _04-Nov-08 Or: There is a huge danger here - Yes it may be great news that YOU can fund your own drugs if the NHS abrogates onm its duty and selects YOU for EUthenasia but in the hands of a Government which since Gordon Brown took over responsibility for Britain's finances has incurred debt at the rate of £9,111 per second 24 hours a day and is personally directly responsible for Britain's exposure to the so called credit crunch as a result of permitting Banks to buy junk paper from America as sordid self seeking gamblers. Do remember this is the man who incurred £2TRILLION of debt which counted at £1 a second will take 63,000 years to count. Perhaps I am a tad sceptical when the BBC under his control pays imbecillic and irresponsible foul mouthed children £16,000 a day on £18Million contracts - no wonder it is convenient to kill people as his Government's policy rather than pay for the drugs. I believe, based on the duplicity and corruption of our politicians and the FACT that they are paying huge amounts to N.I.C.E. & P.C.Ts. etc. to hide the Governments corruption rather than fund treatment & drugs, there is every reason to believe that They will shortly open Harold Shipman Wards in NHS Hospitals for those they intend to kill UNLESS you pay for your own drugs! This is the thin end of a very evil wedge - don't hold out ANY hope the opposition will speak out - Theresa May last week when picking the opposition choice for a HoC debate whilst credit collapses, unemployment spirals out of control, bankruptcys burgeon, and a currency crash tsunami is imminent chose THE most important subject the Tories could think of: 'Did the BBC handle the Jonathan Ross affair competently' Frankly Theresa that may be the most important event the Tories are capable of handling but frankly who gives a ****! I support EUthenasia by choice I Totally Repudiate State Murder! Regards, Greg L-W. Do by all means send copies of this to your MEP; MP; Councillors; National & Local Meeeeja over your signature or mine - they may phone me for comment on 01291 - 62 65 62
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Hi, I just posted this as a comment on Kerry McCarthy’s web blog at: http://kerry-mccarthy.blogspot.com/2008/08/too-much-to-ask.html Perhaps you would care to post YOUR comment too! Regards, Greg L-W. [quote="Kerry McCarthy MP"] Monday, 11 August 2008 [b]Too much to ask[/b] Breaking news from the Guardian... which doesn't particularly surprise me where Bristol is concerned, but it's very useful to have the figures with which to confirm my suspicions. Although it doesn't necessarily mean that the PCTs who turned down appeals are in the wrong; NICE is there for a purpose, and generally I would back its decisions. But I see its role primarily as ensuring that public money doesn't get wasted on virtually useless products being pushed by big pharmaceutical companies. It gets more difficult when there is clear proof that the drug does have some positive effect, but it comes down to a cost-benefit-analysis, which is roughly based on cost of the drug cf. additional years of quality life. How do you decide whether giving someone an average six months extra is worth £30,000? The PCT exceptional funding appeals panels are meant to look not at whether someone's personal circumstances are exceptional, but whether their potential response to treatment sets them apart from other applicants. So it's not about whether you've got young children, or have led a blameless life, or whatever (which would get you into very difficult territory); it's about whether you're likely to live longer, respond better, etc. (Correct me if I'm wrong on that, someone). I had one constituent recently who appealed successfully against being refused the kidney cancer drug Sutent - see my The Drugs Don't Work post from July, and no I didn't really mean that the drugs don't work as one email correspondent thought. On Friday however I was visited at my surgery by another constituent whose father has kidney cancer and is being denied Sutent. The family are faced with selling their belongings to try to fund the drug privately. They could also fall foul of the ridiculous NHS co-payment guidelines, which basically mean that if you pay for the drugs privately, you have to pay for everything privately. (We're doing something about that, thank God, although it won't come quickly enough for my constituent's father.) Although my constituent's father doesn't live in Bristol, I've said I'll do what I can to support his appeal, along with his own MP. I'm not sure we'll succeed this time, given the NICE interim guidelines. But how do you tell someone what price you think should be put on a year of her father's life? Posted by Kerry at Monday, August 11, 2008 [/quote] 1 comments: [quote="Greg L-W."] Hi, May I take the liberty of reminding you of the self serving speech of our glorious leader Gordon Brown in his speech on the 60th anniversary of the NHS: "As individuals in Britain we know that - should serious illness strike - we will be cared for and the cost of that care will be absorbed not by us as individuals, but by all of us together - in a comprehensive healthcare system publicly funded by taxation" This is the man who as Chancellor has racked up a National debt of £650bn.; achieved a deficit in government Pensions of £760bn.; accrued a deficit of over £90bn. in local Government pensions, achieved a debt of between £500bn. & £1.3Trillion on PFI. Then he found £100bn. for professional gamblers who backed the wrong numbers in the City casinos at Northern Rock, Now followed by £500bn. for those daft enough to take £Millions in bonuses whilst robbing the system blind. Now it looks as if we are to fund Iceland and the cupidity of the idiots in Local Government & Public Services who took John Prescott's advice and have lost yet more £Billions of other people's money - well that's socialism I guess. Yet we are expected to turn a blind eye to Brown's lies in his statement about the NHS where a very small sum relatively would avoid the Government sheltering behind its cronies in its appointed QUANGOs as they EUthenase patients against their will based on economic expediency. Perhaps someone can explain the difference between prescribing the wrong drugs to kill patients and prescribing no drugs and killing them against their will - How long before New Labour open Harald Shipman Wards in all hospitals to kill off patients who are inconvenient - starting I note with Kidney Cancer patients by refusal of Sutent, Nexavar, Torisil or Avastin when clinically required. Just as Tony Blair's Government was guilty of lies about WMDs & Delivery Systems leading to War Crimes & Crimes Against Humanity by their actions and dishonesty - now we have Gordon Brown's Government guilty of murdering British citizens in hospital beds! If you want to learn more about Kidney Cancer have a look at www.KidneyCancerResource.com or contact me on 01291 - 62 65 62 or eMail me on Greg@GlanceBack.Demon.co.UK Thank you for having tried to help one of your constituents with Renal Cell Carcinoma recently perhaps you could extend that to changing the system that kills NHS patients! Regards, Greg Lance-Watkins 11 October 2008 04:13 [/quote] Warm Hands, Regards, Greg L-W.
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Canadian Cancer Society Event - Friday 26th September, 2008 I was told by a colleague that there was an event reported by the local radio station, with a number to call. So on Friday morning I called to see what it was about. Turns out that all the Board Members for Nova Scotia were going to be there, and they were trying something new. Up to 3 Attendeees would sit with a Board Member for about half an hour, and have a conversation around a particular question. I really wasn't sure whether to go or not, as Jerry was working, so I would be going on my own. But the lady said, because I was newly diangnozed, and moving through the maze of who could help, it would be very useful for the board to here my story. So along I went, and they started with a presentation, and then a facilitator took us through the process. It was I think mainly attended by volunteers, who were cancer survivors, or had a family member that had cancer. It was an interesting evening, and people were very kind. During the closing everyone but Board Members were given the opportunity to say how they felt about the evening, so I did say a few words, about the fact that the event made you feel that the Board was prepared to listen to people that needed help, or had something to say about what they could do better. Then the Board Members decided to speak in turn, and two of them gave me an accolade for attending, and sharing my story, and telling me that they would be there for me. Even though this was musical chairs, you didn't quite know where you would end up sitting next, I ended up sitting with the same attendee twice, a lady called Alice, whose husband was 88, and had lung cancer, but was doing very well. The first time the Board Member said that in my circumstances, with not having any family here, other than my husband, what I needed was a surrogate Mum, and Alice was in that initial group. When she joined the final group I was with, and with the closing speeches, she passed me a paper with her phone number on it.. and I returned the favor. She said to call and come by anytime for a cup of tea and a chat. When everyone got up, and were making for the door, I got so many hugs from people, it was amazing, and very comforting. The Board Member I sat with initially, doesn't live that far from me, and she swopped email addresses with me, and asked if we could keep in touch. And then yesterday when I was in a shop in town, a lady that worked there said she had seen me the night before, and asked how I was doing etc.. and then mentioned the Board Member that lived near here, and turns out that she had lost many family members to cancer, had had preventative surgery because of that. Looking back she was so bright and bubbly, smiling and so giving, and now knowing some of what she must have been through, I find that truly amazing, that she still have something to give: she has not given in to any of it. When I originally called up about it, I got an email with lots of information, and contact details for someone that could help with accommodation in Halifax, amongst other things, so I had made that contact Friday. The Canadian Cancer Society has a 34 bed accommodation across the road from the hospital: called 'The Lodge that Gives', free to patients, and then $55 per person, no tax, and meals included. So they are going to let me know tomorrow if they have availability for when I go for surgery. This way Jerry and my sister will have somewhere to go for a break, and know they can have their meals, without having to go to an expensive restaurant or something. It is now 3 weeks to go to surgery, and so recently it was 5 weeks to go (I had thought it was 4), and then after a week when I checked it was still 4 weeks to go, and suddenly from the clock feeling as if it had stopeed, I think it started up again.
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Surgery Date is Set! I got the call today, and surgery is set for 20th October. The Hospital will telephone me with the time I need to be there. They faxed through a medical note (on the Urologists Letterhead) to Human Resources, stating that recovery is expected to be 8-12 weeks. I am assuming the 12 weeks is if becomes a radical nephrectomy, as opposed to laparascopic nephrectomy. I now have to get on with life until then, including visiting my sister in Toronto for Thanksgiving.. we are leaving 10th October and returning on the Monday 13th October. I want to look forward to the trip, and try not to have this overpowering everything I do. It is just over 2 weeks since I was initially told what they suspected, and 4 days since it was confirmed.. I suppose this must be normal to still be dwelling on it. I also received a huge envelope of booklets from the Canadian Cancer Society, which I have not had a chance to browse through yet. In discussing this with Jerry, we will no doubt go down to Halifax on the Sunday, and stay over in the Point Pleasant Lodge, which is just over the road from the Hospital, and has special rates for family and patients. Then we are there ready for the Monday, ready for what we have to face. We have a real issue with the fact that any time off Jerry has, he will not be earning, and I will be on Medical leave, which I will have to wait at least 2 weeks for any money to come through, maybe longer. Of course any journeys Jerry makes to Halifax in a Truck that guzzles the gas (petrol) almost eats up any money he will earn in order to drive back and forth. So a catch-22 situation.
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My Consult with the Urologist on Friday 12th September, 08 Where do I start? He did not introduce himself, but I had found him on the Dalahousie website, and there was a photo fo him, so I knew what he looked like. He assumed that the people in front of him were the ones related to the paperwork - I presume. He said he was going to check the scans, and I asked if I could come too, that I needed it to be real, confirmed, and he said he would bring them back to show me. My Right Kidney is small, and the tumor is almost bigger than the rest of it, and he said if you had to choose this would be the one to remove. The left kidney is picture perfect, just like in all the anatomy pictures, and large in comparison. He was very short shrift, it’s a tumor, it’s got to come out, we will do it laprascopically, and then you can get on with life. I pretty much forgot my list of questions.. Doh! I did ask if it was Cancer - he said there was very little doubt. I asked about the mark on the liver, he circled the word ‘hemangioma’.. I asked would he be checking, and he said no not at this time. I asked was it likely to be related - he said highly unlikely. He said the regular scans will pick up on it if it is something to be concerned about. He actually asked did I want bad news.. he said I was among the 95% that have the kidney out and that is the end of it. But it was like pulling teeth, the whole process. I asked did I need to see the Oncologist, and he said ‘what so that they can tell you it has to come out too’. I asked how long it was likely to have been there, and he said they normally grow about 1cm a year, so possibly 4 years, which is while we were still in France. I asked what would I need to do afterwards in terms of meds, and he said I wouldn’t need any. He does want me to have a chest X-ray so he can see the to half of the lungs, and I will go get that done on Monday. He said he wanted me in for the op in a few weeks time, and then I asked will I be able to go to Toronto for Thanksgiving, and he was nodding no.. so then I said my sister asked if you can do this after, and he said yes of course, enjoy Thanksgiving and we will see you straight after. Then I was worried and kept asking was he sure, and he said positive, a few weeks will make no difference. So one of his specialties is laprascopic surgery, and he said he would only do radical if they couldn’t get a kidney out, or if they nicked a vein and needed to stop the bleeding. I asked how long I would stay in, and if he can do it this way a couple of days, and the recovery time is ‘not long’.. so I do not know what that means.. ‘not long’. Jerry was touching my arm for us to leave the room, the Dr was stood up ready to leave the room.. and I wasn’t done yet.. and my list of questions was still there, but leave we did. After I was cross for the next hour of the journey home, because I didn’t get anything from him to give to Human Resources at work. But I know I have time to get that sent to me. So the consult was not what I expected, and guess what - I do not have oedema, I have 20 pounds of something else.. might just be age catching up with me. He did make a joke that maybe I would lose 20 pounds when he removed the kidney. At least now I have a focus for the next month, a diet, haven’t needed one of them in about 7 years if not longer. So all this complaining about oedema to my GP, and the heart specialist got me to this guy, who agrees with the others, you do not have oedema - but the complaining found this, so one has to be grateful for that.
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I pretty much had a non-weekend last weekend, and it was a 3-day weekend, and pretty much wasted on me. Spent my time right here, delving for more information, and frightening myself. I was then talking to someone at work, about it being the not really knowing, was the hard part, and they suggested I go back to my own Dr, to just chat, and ask for more information from the report. So on Thursday, I went back to see him, and he even gave me a copy of the Ultrasound and CT Scan reports. He said that the way the report reads, it is pretty conclusive that it is RCC, but that the good news is that it is contained within the Kidney. The spleen, adrenals, pancreas, lung bases are clean, and no vascular invasion. . There is however a 7mm liver lesion, which verbatim says ' may represent an hemangioma although metastases cannot be excluded. An MRI may be useful for further assessment'. The Dr said they would chase up for my referral appointment, and I now have that, next Friday 12th September, at 2:10pm. I have been told by the Dr's office that this is just a consultation with the surgeon, where I come in for the appointment and go home afterwards. It was almost amusing the way the lady spoke to me, but they must get people who almost think that this is your OR date, and need it spelled out to them. It is a stressful time. I am doing better psychologically, but still have my moments where crying is the only way to deal with how frightening all this is. Other times, I am so in control, and planning for not being at work, making sure that everything is in place so that I do get some money while I am off. I have put the wheels in motion to upgrade my medical health insurance to Enhanced, which will cover 100% of any prescriptions. I had looked into who helps when your medical cover does not cover enough, and have found a man who can. So really thinking of the practical things, so save any panic later. My husband and I have talked and talked through what is ahead of us, and I think accepting that the surgey is inevitable has been a big help. We are now dealing with practicalites - like a half door on the bedroom, that give the cats access, but will keep our 2 dogs out. Currently, our two dogs live a life of luxury, but have a tough lesson ahead, but I don't want to keep the cats out, as they will be comforting to have next to me. My sister in Toronto has arranged for us to visit her for Thanksgiving 10th - 13th October, so sadly one of my questions to the surgeon will be, can we do this on the 14th? but as the Dr's office said, he ultimately decides how quickly the surgery has to be done, and I may have to forget going away at all. Will update more when the consult is behind me. Would it be better to have the blog outside of this site??
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I am taking up the suggestion to start a Blog, to track what happens from here on, so that it will help me remember all the challenges that may be ahead. So my name is Gemma Angharad Shoebridge, I am 52, am from Wales, but now live in Nova Scotia, on Cape Breton Island. I am married to Jerry, who is from Bristol, and we have been together almost 15 years. I have one sister and she lives in Toronto. I have gone from having Pneumonia in March 2006, and it seems as a result of that have now been diagnozed with PSVT, Paroximal Supraventricular Tachycardia.. a not too serious heart Arhythmia which I now take medication for.. this was in the June/July just gone. Due to my making my oedema the main priority with my heart specialist, as if everything begins and ends with what the reading on the scales reads.. prior to final diagnosis he arranged for an Ultrasound. I had to wait a few months for that, which was a week ago, on 25th August,08, when I discovered that it was a Kidney and bladder ultrasound I was having, I suppose the drinking a litre of water before hand should have been a clue. While in the washroom (the loo), the technician disappeared and then came back after what seemed a long time, and said to save us having to drive all the way back again, she had checked with the heart specialist if he wanted them to do anything else while I was there.. so there I was having a CT scan. Everyone looked after me wonderfully, and off home we toddled, thinking they had saved us a journey back and forth to the hospital. Following on from that, Wednesday morning, 27th August, Jerry tells me that Dr Ben.. my GP, had called the day before wanting to touch base with me. So got to work and called him, and he quietly tells me that he wants to touch base with me, to make sure that I am being taken care of, to deal with the suspected Kidney tumour - and that is how I found out what my current situation is. I was then due to go in to see him the next afternoon, but after calling Jerry to come get me, so I could tell him, I then called the Dr's office again, to say I had to see him that day. Subsequently I had the report read to me.. that there is a large solid mass on my right kidney, and a 7mm something on my liver. He had unfortunately thought that I had seen the specialist on Monday, and didn't realise that he dropped the bomb over the phone. So now I have been referred to Halifax, and have 2-3 weeks to wait for that appointment. Having really told everyone that needed to know, except my mother in Wales who is 84, and don't really want to tell her until I have a definitive answer.
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Not so NICE Shame on you!!!I like a few of my peers went to demonstrate outside the (not so) NICE headquarters yesterday hoping to make our point and show them the human cost of denying kidney cancer patients like myself our drugs on the grounds of cost!!. I had travelled from Nottingham, Jean Murphy travelled from Manchester Rose had travelled from Cornwall, but the (not so) NICE boss wouldn't even travel down the lift of his building to meet us instead he sent security and had us photographed while the (not so) NICE people hid behind a wall. SHAME ON YOU MR DILLON!!! The police were in attendance and to be honest it wasn't as if any of us had the energy to cause enough trouble that the police would be needed, the journey itself was enough for us. I was so proud and happy to meet Jean she is a true diamond and had Jean and I had our way we would have walked on to Westminster to take our protest to the government but alas that was not on the agenda but we intend to make it to Westminster soon and we hope everyone who turned up yesterday turns up for the next demo. Andy it was so good to finally meet you and I hope that you too will be at the next step in the campaign to get the drugs kidney cancer patients need to give us our right to life!!. Today however I am shattered and suffering for my protest UNLIKE MR DILLON!!! who probably just went home had a drink and everything is back to normal for him today. Just another Thursday for you Mr Dillon? for some of those people who travelled to meet you yesterday our normal Thursdays are numbered thanks to you and your committee!!!!. SHAME ON YOU!!!
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Hi, I do find the behaviour of the British Government shamefull. It is clearly revolting that on the very day the Government's shelter organisation the QUANGO N.I.C.E. is befouling the image of what was the envy of the world, the British NHS, by hiding in their luxury Head Quarters behind their £30,000,000 annual budget. Hiding from some 60 Kidney Cancer patients and their carers peacefully demonstrating against the new Government policy, as announced by N.I.C.E., to selectively EUthenase an entire category of patients those Challenged by Kidney Cancer who are now to be deliberately denied the drugs they clinically require both to continue to live and to have a quality in the life that is left to the, Whilst these brave people, some of whom were dying as a result of this deliberate action, were demonstrating I, as a Kidney Cancer patient was unable to attend due to the damage I have received physically as a result of my Kidney Cancer, but whilst my friends were there to protest at their impending death, against the very people who can save them N.I.C.E. - I was aware the disingenuous claim of N.I.C.E. was that they could not afford the drugs and rather than admit it was directly due to the incompetence of the Government in the management of the Health Service - the devolved irresponsibility of regionalisation that has led to the "post code lottery". N.I.C.E. has even tried to shelter their incompetence to manage or negotiate, behind the specious claim that the people who researched and funded the developement of these drugs charge too much - yet it is clear that America who fund the drug for prisoners on death row and the Argentine that prescribes it more than Britain, Malasia and the EU and a total of some 70 Countries around the world would seem to disagree! Consider - on the very day whilst my friends were demonstarting and their servants the Government funded N.I.C.E. lacked even the manners to meet with these very ill people and N.I.C.E. security was turned on these sick people to intimidate them by photographing them in the street despite the presence of Police Officers invited BY the demonstrators! Whilst they were peacefully demonstrating and N.I.C.E. hid in shame - I read on my computer that MY Government had pledged to squander from the NHS budget £170,000,000 to train therapists to councel those with 'Cognative Behaviour Disorder' - to buy votes by providing this fashion and lifestyle service rather than fund the drugs that are available world wide for Kidney Cancer that may, if nothing else, provide experience for the Oncologists and researchers towards an actual cure whilst giving hope to us The Kidney Cancer Patients that N.I.C.E. have selected to deliberately permit to die for economic expediency - whilst still funding breast enhancement, In Vitro Fertilisation, tattoo removal and many other treatments that can ONLY be seen as frivolous when compared with the deliberate death of Kidney Cancer patients! Do warn us at what stage we are to be moved into The Harold Shipman Ward in our Regionalised NHS Hospital. First they came for Kidney Cancer patients and took away their lives but as you were no a Kidney Cancer Patient I guess you did nothing! Then they came for those with Crohns Disease (?) and withdrew their treatment but as you didn't have Crohns Disease I guess you did nothing! When they come for YOU in your hour of need and weakness - there was no one left to help you they had been swept away, I guess 'cos you did nothing! Where will YOU draw the line - Must it be YOUR child, YOUR Mother, YOUR wife? Or would it have to be YOU? That is YOUR Shame to share with N.I.C.E. and the Government that hides behind them! Regards and Warm Hands for YOUR Hour of Need, Greg L-W. Available to help YOU 01291 - 62 65 62 Please feel free to visit and join The Forum to discuss topics with others. Click on the Users Forum link or click on the link in the Main Menu on the left hand side at any time. Since medical information on line is notoriously prone to 'Snake Oil' sales Questions may be asked or answered in the full light of member scrutiny on The Forum. It is felt that this may give 'some' protection from those seeking to exploit medical fears or confusion. It is for this reason, amongst others, that we would ask you to use The Forum in preference to The Discussion Tags. Clearly if you feel there are inaccuracies within the article then feel free to fix those directly. Thank you in anticipation of ANY help you can give in the building of The Web Site or in discussion on The Forum. To Post on This Web Site it is required that you join as a User/Member, as also on The Forum where you may become a Member separately. Welcome to our Community.
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To see Andrew Dillon's response to my mail Click Here
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My e-mail and response to NICE and my Local MP. I will be handing this in tomorrow, but have also e-mailed it to them as well Andrew Dillon Chief Executive National Institute for health and Clinical Excellence MidCity Place 71 High Holborn London WC1V 6NA Dear Mr Dillon, RE:Bevacizumab, sorafenib, sunitinib and temsirolimus for renal cell carcinoma As a Kidney Cancer patient I write to you in reference to your draft report on 7th August that outlines your recommendation to not approve the drugs for Advanced Kidney Cancer i.e. Sutent, Nexavar, Avastin and Torisel. Over the past weeks I have heard a number of arguments that you’ve used to back your recommendation. 1. QALY, i.e. that these drugs do not extend a person’s life for long enough given the cost of the drugs My response: • These drugs are used successfully across Europe and the US and have been proven to offer significant improvements to quality of life as well as extending the life of a terminally ill kidney cancer patient for up to 26 months (latest clinical trails data) or longer as witnessed by many Kidney Cancer patients around the world. • It seems to me to be a carpet bomb approach to say no to all 4 on this basis, this says to me that the decision was purely cost based and not on efficacy and clinical trial evidence, it was just NICE saying no to Kidney Cancer Patients no matter what the drug. • Although I realise that the QALY calculation is complex, (although we don’t know as NICE wont release their methodology), I believe that your calculations have not taken into account the clinical trial evidence from other countries. I believe you now have this and will be using it. • There are no other effective treatments for Advanced Kidney Cancer patients. As you know the current treatments have a very small percentage chance of working. You have also now heard from 25 UK experts in this matter backing this fact. To not give these drugs to patients is effectively condemning them to an early death. 2. The Pharmaceutical companies are to blame, their profits are too high and they charge too much for these drugs putting them out of reach for the NHS My Response • They do pump billions into research and as businesses are driven by their shareholders to make profits. Admittedly there maybe an argument to say their profits are too high and should be looked at. This however to me is a separate battle that the government/NICE should fight. It is not fair to use patients as negotiation tools to try and bring the costs down, if the treatments work they should be given as part of the NHS. NICE would earn more public respect and you will find much stronger public support for you battle with the pharmaceutical companies if you weren’t using patients in this way and I suspect you would win. • The Pharmaceutical companies do offer schemes (e.g. Sutent) whereby they will pay for the first round of treatment. Why is this overlooked? It seems common sense to me to allow this because if the drug doesn’t work for that patient then the treatment is stopped. • The figures you quote do not seem to take into account central procurement deals you would be able to negotiate, bringing the costs of drugs down. • These drugs are offered at a lower cost to the UK than many other countries. • Why do you ignore part funding/risk sharing schemes? 3. Who else would have to suffer if these drugs were funded? Which critically ill patients should be condemned instead of Advanced Kidney Cancer patients? My Response • This to me is an unfair argument. Yes, costs have to be factored into the equation, but with all the waste going on in the NHS and in the country as a whole this is just sheer bad management at the most senior levels. We seem as a country able spend billions bailing out our banking system (e.g. Northern Rock) and yet we can’t spare the cash to provide patients with much needed drugs. Not that I condemn the decision to bail out the banks because of the human impact, however it does seem odd that we’re able to do that and yet not provide for the NHS and patients who have no where else to turn. 4. The PCTs are adding to the confusion by not having a collective response to Exceptional Treatment policies and hence are fuelling the Post Code lottery. My Response • Patients are meant to be judged on their individual and specific exceptional needs. Wasn’t that their purpose to provide local accountability and community based support? If the PCTs and NICE are not communicating then what hope is there? It means 2 layers of management in-between the doctors and their patients. I’m so heartened to see that finally consultants and specialists are highlighting the clinical case for innovative cancer drugs and are fighting back. 5. Patients are using the media in an unfair way to put pressure on NICE. My Response • What did you expect? Central government does nothing, our local MPs do nothing, NICE denies the drug, the PCTs turn down the exceptional cases. What course of action are patients left with? • Try and put yourself in the feet of a patient, of course you would do anything you can to get drugs that you know will help. If you personally were told by a specialist that there is a drug that can help but it be wont approved for you even though it has been proven to work in other countries. How would you feel? It is nothing short of cruelty. Now that you can see the weight of public opinion I implore you to change your recommendation and approve these drugs now, not next year. Give patients and families their lives back. Please back the clinical case and restore the faith of the public in our NHS doing the ethical thing and giving these vulnerable patients the treatment they desperately need. Yours sincerely Andy Thomas
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Hi, I do feel you might be fascinated to read the extent to which YOUR GOVERNMENT is prepared to LIE to YOU. You will find on the Department of Health Web site the following statement for which the web address is: Click Here [Quote] Consultation on core principles for everyone providing care to NHS patients Launch date: 11 December 2006 Closing date: 16 March 2007 Creator/s: Department of Health Audience: Health and social care professionals Copyright holder: Crown Gateway number: 7408 'The NHS in England: the operating framework for 2007-08’ sets out for consultation a draft set of NHS principles. All NHS and independent sector providers who sign national model NHS contracts with commissioners from April 2007 will be required to have regard to these principles once they are agreed and published. The relevant contracts will be those covering hospital care. The draft principles on which we are consulting are: 1. The NHS will provide a universal and comprehensive service with equal access for all, free at the point of use, based on clinical need, not ability to pay. Healthcare is a basic human right. Unlike private systems, the NHS will not exclude anyone because of their health status or ability to pay. Access to the NHS will continue to depend upon clinical need, not ability to pay. Unless a charge has been specifically sanctioned by the NHS (e.g. for prescriptions or dental treatment), we will not charge a fee or require a co-payment from any NHS patient. We will provide appropriate care for all those referred to us, within our clinical competence. [/Quote] The fact that it is subsequent to April 2007 indicate that these are the adopted 'principles' for lack of an expletive! Let us consider the FACTS rather than the DoH sales 'Guff': 1. The NHS will provide a universal and comprehensive service with equal access for all, Perhaps they would care to explain why that excludes certain groups of cancer patients and why it is felt necessary to use money from the NHS to fund the salaries of QUANGOs and more particularly the PRIVATE HEALTH CARE of those on those QUANGOs and elsewhere in the Government? free at the point of use, If it is FREE at the point of use/need perhaps it can be explained why Kidney Cancer patients are selected for EUthenasia and under which specific Act of Parliament the State has authorised the NHS to MURDER its patients and on what terms? based on clinical need, The FACT that drugs such as Sutent, Nexavar, Avastin & Torisel are the ONLY current treatment effective on ARCC & mRCC and are thus advocated by every reputable oncologist when apposite as a clinical need - the FACT that the 'service' has seen fit to withold these drugs is not only counter the DoH 'principles' but also as effective a method of EUthenasia as employing an army of Doctors in the ilk of Harold Shipman injecting drugs to kill - no doubt specialist wards will be set up named after him to commemorate his clever idea for saving money! not ability to pay. This is a deliberate misrepresentation on two counts - firstly it is stated that an individual CAN self fund the drugs therefore the treatment you receive IS based upon the ability to pay. Secondly this is a selective situation as many more costly treatments ARE available on the NHS and treatments for the frivolous, by comparison, are funded to a staggering degree relative to the funding required to provide these drugs to all those with a clinical need. Healthcare is a basic human right. Did I hear them say EXCEPT if you have Kidney Cancer - no I thought not! Unlike private systems, the NHS will not exclude anyone because of their health status or ability to pay. If the latest concept of EUthenasing patients on a cost convenience basis starting with those with Kidney Cancer ever comes into being this 'principle' has become a lie - further it equates to The Process decided upon at The Wannasee Conference under 'The Final Solution' whereby it was decided to selectively exterminate certain sectors of the community based upon a slogan of 'Arbeit Macht Frei' including those of certain superstitions and beliefs, DISABLED, and others - I'm not sure if those with Kidney Cancer were specified but they would by the terms of the society at the time have been considered disabled! Access to the NHS will continue to depend upon clinical need, not ability to pay. Pray explain this in the context of the new policies of N.I.C.E. the QUANGO behind which the Government would seem to shelter their obscene incompetence to maintain and manage what was once the envy of the world The NHS. Unless a charge has been specifically sanctioned by the NHS (e.g. for prescriptions or dental treatment), we will not charge a fee or require a co-payment from any NHS patient. So I presume this means that you will honour the 'principle' but have failed to include the statement but we will permit patients to die without treatment although it is readilly available and more than affordable from savings that can easily be made by cutting out expenditure on 'life style' treatments that would seem to be provided on a purely Political basis as 'vote winners' from large numbers rather than life saving for small numbers - to whit: Tattoo removal at a cost of upto £300,000,000 (QUOTE Baroness Gardiner, House of Lords Hansard), VIAGRA at a cost of £Millions, One must of course remember the largely self inflicted problem of constipation due to the wrong diet on which the NHS spends more money than all cancer treatment added together - just as more is spent on the self inflicted problem of obesity than is spent on Kidney Cancer. Then consider the cumulative £Millions spent on criminal unemployed drug addicts at a cost of £12,000 per annum each for Methadone alone! We will provide appropriate care for all those referred to us, I was unaware that my taxes over the years not only deny me the fundamental human right to end my life if I wish but grants the State the right to end my life if THEY wish! within our clinical competence. The provision of Sutent, Nexavar, Avastin & Torisel are indubitably within the 'clinical competence' of the NHS - Perhaps the cronies on unaccountable, over paid, indemnified QUANGOs would be so good as to identify ANYWHERE in the criminal refusal of drugs and resultant killing of patients by PCTs over the last couple of years or N.I.C.E. in particular in their well engineered leak, at the hight of Olympic Publicity (and largely public indifference) whilst some 600 individuals unrelated to performing or training were in Beijing funded from the public purse when the cost of sending an MP was coincidentally almost the same as providing Sutent for a year! This of course does not include over 450 individual from the BBC funded most reluctantly by the tax payer! August is, to quote a Government spokesman, a good time to leak bad news! Perhaps before we hear further fatuous appologias made by spokesmen of the Government and its lakeys on QUANGOs we might hear The Minister for Health appologise both to the patients and carers who in their hour of need have taken a really good emotional kicking from the very people they pay to protect them. Then perhaps it would be wise if The Minister would appologise to the Pharmaceutical Companies for the gross and unwarrented slur cast on them by his staff both in and out of QUANGOs and fatuous idiotic spokesmen like Paul Flynn who was so very ready to pontificate on a subject on which, as is so often, he knew virtually nothing. If The Minister and his staff are incompetent to negotiate with the Pharmaceutical Companies may I suggest they resign. I have found both Pfizer and Bayer incredibly willing to assist, negotiate and co-operate and it was patients and Oncologists who so far have negotiated the first course FREE and all the trials - whilst N.I.C.E. and the other parasites feeding off our disease funded and rewarded themselves for an achievement of shame on a budget of £30,000,000. The Minister's final act had he integrity would be to demand the resignation without compensation or pension and a refusal to rehire in any Government Department or QUANGO all those who have brought about this despicable situation that leavs any honourable Minister with absolutely no option but to resign his office and from politics putting his seat up for election. No man of honour could possibly continue in public office let alone public employ under the circumstances but we must remember that in a septic tank it is not only the scum that rises and I would hazard a guess that The Minister and his staff will prove it. The great tragedy is that there are times when I am ashamed to be British albeit I'm also concerned as I have Kidney Cancer although I am in the fortunate position that AT THE MOMENT I have no need of these drugs but I am minded of Pastor Martin Neimoller who famously said: First they came for the communists, and I did not speak out-- because I was not a communist; Then they came for the socialists, and I did not speak out-- because I was not a socialist; Then they came for the trade unionists, and I did not speak out-- because I was not a trade unionist; Then they came for the Jews, and I did not speak out-- because I was not a Jew; Then they came for me-- and there was no one left to speak out for me'. We have learned little since he said this as I am sure he would have added Sutent, Nexavar, Avastin & Torisel had he been here today. Where will YOU draw the line? Regards, Greg L-W.
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Andrew Dillon, chief executive of Nice, said: “The provisional conclusions on the use of drugs for treating renal cancer are those of an independent appraisal committee whose membership is largely drawn from NHS clinicians in active practice. They understand the issues at stake.” He said that if the 26 oncologists are to “maintain the credibility of their argument” they must explain which patients “should forgo cost-effective care in order to meet the needs of those with renal cancer”. May I usurp their authority and propose that savings could be made as follows: 1. £30,000,000 could be saved by closing N.I.C.E. which is merely a QUANGO behind which corrupt politicians shelter their mismanagement of the NHS. 2. £190,000,000 PER ANNUM could be saved by making organ donorship an opt out scheme rather than an opt in scheme. This being the sum spent on those who are on waiting lists for organs spent annually keeping them alive. 3. Upto £300,000,000 which the Health Service spends per annum on tattoo removal QUOTE Baroness Gardiner House of Lords see Hansard. 4. Cease providing any Government employees with ANY aspect of Private Health Care this would not only make massive multi £Million savings but would also ensure the inducement that they ensure the Heath Service is repaired. 5. Cease providing funding for inflation linked pensions for Government employees - since they are indemnified from their incompetence as inflicted on the balance of the public. 6. Place a ceiling on incomes in Government QUANGOs as few if any of these people are employable in the commercial world which is why they flourish in the unaccountable world of sheltered employment in QUANGOs.
7. Cease giving early retirement and compensation for stress related claims - individuals should be free to select whether they do a given job it being their choice to accept the additional incomes of a given job. Stress in employment is a choice: if you are out of your depth and suffering stress hand back the salary you clearly are failing to earn and quit! 8. Cease providing life style care as a given whereby life style care should ONLY be provided once primary Health Care is provided thus saving on:
9. Withdraw from membership of the EUropean Union as clearly we have joined a club we can afford as we are unable to take care of our own people and are paying £1,800,000 per HOUR of British tax payers money (QUOTE Institute of Directors) and are having to kill British Kidney Cancer patients to find the money to fund the Warsaw Underground, Incompetent French farmers, Corrupt Fishing quotas for great maritime nations like Austria and whilst funding Spain to build their roads we permit them to enrich themselves by stealing fish from British fisheries. 10. Surrender the utterly specious Olympic Games which we clearly can not afford as already the budget of £2.8 Billion has already run to £9.3 Billion with an expectation of a final spend wasted on these irrelevant games of £18 Billion where less than 1% of the population will participate meaningfully in the related sports unlike 100% who will have need of the Health Service where the new policy is to Kill Patients who are too costsly. I do appreciate that Andrew Dillon on his massive salary may well be able to turn a brief phrase in defence of his job and his QUANGO but clearly he is not competent to the job he is paid to do or he would not have made such a staggeringly stupid and ill considered statement regarding the murders he is planning to preside over. Regards, Greg L-W. 01291 - 62 65 62
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Hi, I've just put this on the Cancer Research comments section on their web site: http://scienceblog.cancerresearchuk.org ... omment-537
May I suggest that if you are worried that you have or may get Kidney Cancer and need to claim on your Health Service:- Make sure you are on a Government QUANGO the beauty of the job is that the Government doesn't believe in the Health Service and provides all its senior staff with PRIVATE HEALTH INSURANCE! Also the Government doesn't believe in the Public Pension Service so it gives all its Staff prefferential INFLATION LINKED PENSIONS to compensate for the c*ck up they know they will make in Government. Also Government staff on QUANGOs are not held accountable for mistakes just put all the data you can find on your provided Lap Top and lose it like the MoD do having lost over 700 to date! If you want more expenses just loose your CD with all the records on them and claim for a larger sum. Perhaps you have been away for the last month in Beijing with the other QUANGO members and 650 people funded from the public purse who had NO relevance to performing in the tedious and obscenely costly farce. Join N.I.C.E. or a P.C.T. where you can be sure of no meaningful work, regular long holidays, inflation linked pensions, early retirement, stress related compensation, staff car schemes and of course PRIVATE HEALTH INSURANCE as of course you can't relly on or trust the old NHS which is so badly managed it is obviously broken. Don't worry your job will be safe N.I.C.E. alone has a budget of £30,000,000 and if you need a pay rise you can take it out of the drug budget and kill off a few more Cancer Patients - they're a nuisance anyway they just won't die quietly they are just selfish - next they will start demonstrating but never mind the Government is on your side on a QHANGO so the State Police will be called in under the terrorism laws we can just murder them - woops sorry Mr. Menenez can we have those 8 bullets back! Cover your risk - join a QUANGO. The other beauty of a QUANGO or Government job is you get promoted for lies - look at Blair and his lies about Iraq which used so much of the money we could have used for health. Why do soldiers get health care? They knew the risks they should be like smokers or the obese and denied care! Mandelson lied so often he is now an EU commissioner WITH PRIVATE HEALTH CARE! On a £2.4Billion Budget I note incompetency and waste has already run that to £9.3Billion and it is rumoured the Olympics will cost Britain over £18,000,000,000 - Howmany people will the Government have to kill to pay for their tedious sport? Already they CLAIM that due to their incompetence they are going to have to kill Kidney Cancer patients! Quick join a QUANGO and be safe for life. Join me at http://www.KidneyCancerResource.com where we can fight this clearly non political issue! 'First they came for the Jews but I was not a Jew so I did nothing....' Regards and Warm Hands, Greg L-W.
Regards, Greg L-W.
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London Rally to ProtestI will be there!!! I am planning to arrive at St Pancras about 11am ish then get a taxi to Euston Station to meet Helen then we plan to share a taxi to Holden to meet up with the rest of you rebels... save me an XXL T Shirt pls and whatever other promotional goodies there are. On a different note, I went for CT guided lung biopsy last week and as you all know I was terrified so they got me on the table and gave me a local in my chest took a couple of runs with the scanner then placed the needle for the biopsy into my chest. I was shaking all over uncontrollably but was ready so they ran me through the scanner one more time to check the needle was in place to take the biopsy, then came back and said "sorry we cant do it as when you breathe the piece we want to take the biopsy from keeps moving and going behind a rib, so even if we manage to catch it the chances are we wont get a usable sample, so you can get dressed and we will get in touch with Dr Baldwin's team to arrange a broncosopy" I was gutted!!!! I had worked myself up for this and all I wanted was for it to be over, now I have to go through it all again. I tell ya!! my case has been a comedy of errors since before I was diagnosed and now I feel someone is taking the piss. Anyway on Tuesday I went to day care at the Mc Millain centre and sat with my nurse and sobbed my socks off, I told her how I felt and she wants me to see one of their doctors on Tuesday for a chat about where I want to go from here. So now as it stands I have a results appointment for results I wont be having on Tuesday and a meeting with a Mc Millain doctor same day and then Wednesday off to London. 11 months on from diagnosis and still nothing more confirmed on the lungs, am I wrong to feel this should not be the case? would you question why a biopsy wasn't taken much much earlier than this?, I tell ya I am at the end of my rope then the NICE decision, my god how can people be so cruel and treat people like us this way? and we call ourselves a civilised society.
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Hi, Monday started out by being 'interesting'! I received a phone call from the BBC 'could I hot foot it to their studio in Cardiff for 12.00hrs.' well I tried! You can hear from the eventual broadcast that I arrived after the programme started going out on air and was out of breath but despite the N.I.C.E./Government spokesman I was running against I hope I managed to get our point across. You can listen to the broadcast and judge for yourself until Sunday if you Click Here with luck Andy can put the file onto this web site so that it is archived as the BBC overwrite it on Monday! Regards, Greg L-W.
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Another response from Paul Flynn and my reply Reply from Paul Flynn Andy, I watched the link and anyone would have a heart of stone not to feel sympathy for the patients who may lose a drug that they trust. I have no knowledge of this case, but I do know how Big Pharma works and it's not pretty. It's a commercial calculation. A ridiculous price is set for drugs that were expensive to research but cost pennies to manufacture . Big Pharma enlists PR companies to expensively market the drug. That adds more to the high price. A patient who will attract public sympathy is promoted and (often trained) to present the most heart breaking account of their plight. These are a hard-headed business stunts that exploit all our emotions in order to serve the financial interests of Big Pharma. There can never be an infinite budget and hard choices are inevitable in the real world. That choice is best made by an independent body like Nice that any group that is open to pressure and bullying from Big Pharma- that includes politicians.
Hi Paul There are so many of these stories sadly. I'm sure you saw the Panorama report last night on this subject. With Kidney Cancer the fact is that these drugs work. Today, yet again I received notification from a patient who's tumours have reduced by 10cm on each side using Sutent. He's only been using it for a few months and the results are fantastic. Guess what, he had to find money privately to do it, totally unfair. I've received a number of comments both privately and on my blog today and yesterday from fellow cancer patients and carers in the US who are telling us that they work. N.I.C.E cannot ignore the clinical evidence. Yes the pharmas probably do charge too much, but that to me is a different battle. If a drug works then to me the NHS is obliged to give it i.e. "Treatment at the Point of Need", especially when the experts in the field prescribe it. Can you imagine what it feels like for a cancer patient to be told by their oncologist that there is a drug that works for their condition but the NHS wont provide it? It's cruelty. If the government, NICE and the PCTs want to go into battle with the pharmas over cost, fantastic, I'm sure you will get support from all quarters. However please lets not kill patients in the mean time to make a point over those costs. That to me is using people's life's as a negotiation tool. If you were to take the approach of fighting the pharmas whilst still treating the patients with latest available drugs then the ground swell of public support I'm sure would be in your favour and the battle would be won quicker. At the moment the government, NICE and the PCTs are seen as (and are) the immediate problem. There were too many examples on last nights program of unfair and immoral decisions. Andy
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Paul Flynn's reply and my response to it - written by Paul Flynn in response to Andy Thomas At last, the real culprit is being nailed. NICE is a fine innovation which has been copied in other countries. They have the very difficult task of balancing out the advantages of where the money is spent. There are no 'miracle' drugs in spite of the tabloid hype. The drugs budget has been increasing at about 8% a year beyond inflation and taking money away from other NHS budgets that deliver good life-saving value treatments.
This House is infested with organisations that, on the surface, are perfectly good. I had some influence in one of them—I shall not name it—and I see that it is now organising a relaunch with help from a lobbyist. Who is paying the lobbyist? It is one of the pharmaceutical companies. Their influence is everywhere and their tentacles stretch into the Government, the patient bodies and elsewhere.
Paul Thanks for the reply. I’m not sure who you mean by the real culprit. To focus in on the 4 Kidney Cancer drugs (SUTENT, AVASTIN, NEXAVAR and TORISEL) which is the issue in the press at the moment, and the one I have a concern with I’ll try and come back on some of your points as they relate to Kidney Cancer. Hopefully N.I.C.E will see the light and realise that we are dealing with real individuals here and not a general issue. Reading from your reply it’s dealing more with the general problems rather than the specifics behind this problem.
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Hi Paul, Thanks for raising awareness around this subject; it's good to see that someone is willing to debate the subject. The issue I'd like to raise is that the Kidney Cancer drugs that NICE have chosen to deny are available in most other countries, so why not ours? Are we so much poorer? I realise that cost always has to be taken into account, however NICE seem to shift their argument from cost to the drugs not offering enough benefit (which is not true), and now they are shifting the blame onto the PCTs for not being consistent and creating the whole postcode lottery. I admit I'm confused. There appears to be no consistency around who does what and how. The PCTs claim they were setup to specifically work in the interest of their local communities which naturally creates a postcode lottery, and yet NICE say all the PCTs should be working together. When I wrote to my local MP (Claire Ward) I was told that this was not a government issue and was the sole responsibility of NICE and the PCT. To say I was disappointed with that response would be an understatement, pointing a cancer patient at Cancer Research was little more than patronisation, I have no problem with Cancer Research but I think I could have worked that out for myself. If our elected members are unwilling to take responsibility then what hope is there? To see her response feel free to open the links on my Blog http://fit-vibes.co.uk/WordPress/?p=74 I tend to agree that the big pharmas are making huge profits, but then again that's business isn't it? If we didn't have them pumping huge amounts of money into research we wouldn't have the drugs in the first place, so to me it's a catch 22 situation. Given we all tend to agree that the pharmas could maybe bring their costs down a little, then what cost should we put on a cancer patient's life? £2,000/Month? £2,500/Month? £1000/month? At what level will NICE agree to keep tax payers alive? I think if NICE (or indeed the government) want to use cost as a reason for not delivering these much needed drugs to patients then I think we need to have more transparency around the whole process so we can all be made aware of how the money is used. What will now happen to the people who have been granted these drugs already? Will they be denied now and condemned? Here's an example of a patient in such a situation: http://www.kidneycancerresource.com...KC%29_15-Aug-08 Why would we want to put these people through so much stress? I hope I'm lucky and now free of cancer, however I can tell you from personal experience that the stress and turmoil this puts you through is unimaginable unless you've been there. To expect a patient to have to beg for a drug they know will help is unforgivable. Look at Jean Murphy who even got a human rights ruling against her local PCT and yet still they refused. Anyway I could talk about this at length, however I hope you'll take the time to dig into more detail and help the Kidney Cancer patients that have been given less than 20 days to get their responses into NICE on the dreadful decision. Maybe you'd have access to the people who gave us such short notice to co-ordinate our responses? Thanks Andy
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I note with some interest the lengthy tortalogous definition of PCT Policy which Rose Woodward has tracked down which follows: [QUOTE] This is a typical attempt of a PCT to explain why they are refusing to fund cancer treatments. This is from their policy document. Guidance for considering exceptionality¡¦ in individual cases Oxfordshire Commissioning Board decision - Policy Statement 80a
General guidelines: 1. It is stated on the Priorities Forum low priority¡¨ policies Potentially exceptionalcircumstances may be considered by the patient¡¦s PCT where there is evidence of significant health status impairment (e.g. inability to perform activities of daily living)¡¨. 2. By definition, 'exceptional' may not necessarily be predicted or spelt out in advance. 3. The fact that a patient¡¦s clinical picture matches ¡¥accepted indications¡¦ for a treatment which is not normally provided is not, in itself, exceptional. 4. The fact that the treatment is (or is likely to be) efficacious for a particular patient is not, in itself, exceptional. 5. Consideration will be given to evidence that shows that the benefit from the treatment for the patient would be significantly greater than would be expected for an average patient. 6. It is for the requesting clinician (or the patient) to demonstrate why they should be considered as an exception. ===========================Individual Patient Requests Exceptional Status (what makes the individual sufficiently different from the usual in policy terms)
In order for funding to be agreed there must be some unusual or unique clinical factor about the patient that suggests that they are: „« Significantly different to the general population of patients with the condition in question And „« likely to gain significantly more benefit from the intervention than might be expected from the average patient with the condition. However: „« The fact that a treatment is likely to be efficacious for a patient is not, in itself, a basis for an exception. „« If a patient's clinical condition matches the 'accepted indications' for a treatment that is not funded, their circumstances are not, by definition, exceptional. „« Social value judgements (the 'worth¡¦ of patients) are not relevant to the consideration of exceptional status but there may rarely be exceptional circumstances where benefits may go beyond the patient (e.g. as a carer) in respect of social or health related benefits for others.
Oxfordshire Treatment Request Panel and Case Review Committee June 2007 [/QUOTE] Why we go to such lengths to track this sort of stuff down one has to wonder when we could so much more readily have obtained the original training manual for PCT Diktat Obfuscation when required to hide dishonesty and corruption in regulation documents. Here is the relevant passage in the Drafting Officer's Manual: [QUOTE] "The fact that the Patient needed to know was not known at the time that the now known need to know was known, and therefore those of us who needed to advise and inform felt that the information that we needed as to whether or not to inform the highest authority of the known information was not yet known, and therefore there was no authority for the authority to be informed because the need to know was not yet known, or needed." [/QUOTE] I must admit that I have cheated a little as I substituted the word patient for prime minister in this section of speech by Sir Humphry in 'Yes Minister'. For EU Regulations it may interest you to know that the Official drafting of ALL EU drivel is drawn up by French ENARCHS, who are, whilst at L' Ecole National, it seems trained in the black arts of perfidy to write any sentence in a manner where that which is the diametric opposite of that which it would seem to indicate! No one has yet managed to answer the simple question under Law - by which Act of Parliament are The State authorised to practice EUthenasia on selected groups? The fact that the Government shelter behind their appointed cronies in N.I.C.E., P.C.Ts. etc. makes it no less a State decision to EUthenase selected Kidney Cancer patients. In a civilised society it is possible to judge its standards by the way it treats its weakest citizens. To administer a poison in order to kill someone is an act of MURDER - perhaps someone wiser than I in authority can explain how it is Morally any different witholding a needed and proven drug. Be aware that - the self same Government which is advocating the deliberate Muder of certain selected Kidney Cancer patients on the grounds of cost efficacy of certain drugs has I understand sent over 600 people, besides athletes & trainers, to Beijing to watch people running around in circles or whatever - I understand the cost of an MP in terms of expenses runs to about £24K. This is the same Government that authorises the John Lewis List scam and the funding of London second homes for MPs. More specifically this is the Government which Baroness Gardiner assured us in The House of Lords 'spends upto £300,000,000 on tattoo removal'. Just how can the deliberate Murder of Kidney Cancer Patients be justified? Any ideas? Regards, Greg L-W.
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N.I.C.E Say We’re Mean…………It’s hard to feel sorry for them, let’s face it they’ll probably all have private health cover and will never be left in a position where they have to go down on bended knee to beg for drugs to keep them alive, do I feel sorry for them, do I feel we’re being “mean”….. no. Finally they’re getting shown up. There’s been a huge amount of news coverage over the last week or so about the dreadful decision by N.I.C.E who have said no to SUTENT, NEXAVAR, AVASTIN and TORISEL being freely available on the NHS. It’s been hard for KCR to keep up with them all, which is great, finally some real traction. This has been a devastating blow to mRCC patients across the UK. People who have already won their PCT appeals are now left wondering if their treatment will continue. For those who are waiting to go to appeal it means an almost definite no as the PCTs collectively stand behind the N.I.C.E decision. Before this announcement you could expect a chance of receiving the drug, in North West for example the PCTs were allowing the drug, now the answer is a resounding no. It’s a disgrace. So what’s happened in the media then? 5 articles today spread across the national media all telling us how angry the drug chief is at the high prices the pharmaceutical companies put on these drugs which is making them too costly for the NHS. He even said that people were being “mean” to N.I.C.E. Is this the media trying to bring a balance to the argument or is it because government |