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14 March 2008
Dear Sirs
Diane Winston is a Kidney Cancer sufferer who desperately need a potential life saving drugs called Sorafenib which are being withheld from me by Hampshire Primary Care Trust ( PCT ).
Her support group is working on raising awareness of this situation which just about anyone of us could so easily find themselves in along with around 3000 people nationally who are already there. Would you be so kind as to let me know if your company would be so kind as to donate whatever it can to add to the attraction of prizes to be raffled in support of this.
In support of this work Vauxhall have already donated a car at cost which will be used in support of raising awareness while obtaining funds by raffling the car to purchase the life saving drug which are being withheld from me by Hampshire Primary Care Trust ( PCT ).
Meridian television is also on side and will be giving coverage to this event.
The following is a summary of her medical situation and can be confirmed with a doctor’s letter if required
In October 2006 she was diagnosed with Kidney cancer in my right kidney.
The primary tumor was removed on 6th November 2006, when an emergency operation was necessary in the evening to stop internal bleeding.
This was followed by a 3-month course of Interferon, which was terminated three weeks early because of my inability to tolerate the side-effects. The most recent MRI and CT scans have shown that the cancer has spread significantly and there are new sites, which clearly indicates the reduced treatment has failed..
Had her cancer been diagnosed earlier there is every possibility that it could have been caught at Stage I and not Stage IV, permitting a better prognosis and chance of survival.
As a member of NHS staff, she is aware of the complex financial decisions that need to be made when introducing new medication as a standard treatment. However, she is also aware that Sorafenib has been shown in a clinical trial to increase survival (with a statistically significant difference compared with placebos), and that this would give her a chance to delay or halt the disease within my body and permit greater freedom of movement. In fact, Sorafenib is prescribed to patients suffering from advanced kidney cancer in the U.S.A. and in Europe. Its use in the U.K. is being considered by NICE, which will report on it in 2009, but that might be too late for me.
So far her husband Lionel Winston has secured assured coverage of Vauxhall involvement with Meridian Television and is working on placing the car on site at the HMS Sultan Summer show and the Meet the Navy Weekend in July of this car. These venues would secure maximum publicity for all involved by doing so would raise awareness of this situation.
Thank you.
Yours truly,
Your Name
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2 comments:
Hi,
My name is Rose Woodward and I am also a KC patient, about 18 months ago I got together with a group of people to challenge this awful process patients are forced to go through . If you would like to get in touch I can provide you with the clinical evidence for Nexavar( sorafenib) and also put you in touch with other patients who could perhaps offer you some support. To date my patient led protest group have won over 70 appeals processes for KC patients in the nightmare situation. For your info I am attaching the list of those PCT's currently funding either Sutent or Nexavar Cancer Networks/Primary Care Trusts Funding Sutent & Nexavar. Please get in touch, we can give you advice about fighting this callous decision from your PCT ( putting it politely!!) Many patients get a lot of comfort from knowing they are not alone in this battle
The North East SHA issued a Press Release on the 28th August approving Sutent as routine 1st & 2nd line treatment for all patients with mRCC in the following PCT’s with immediate effect.
County Durham, Northumberland Care Trust
North Tyneside Redcar and Cleveland
South Tyneside, North Tees,
Sunderland Teaching. Darlington,
Gateshead, Hartlepool,
Middlesbrough, Newcastle,
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The NW specialist commissioners have issued a press release about their approach to Sutent; JS/SS/MS/AJR/JD 6 February 2008.
"The three North West cancer networks have historically operated independently of one another and therefore - understandably because of differing priorities, taken different approaches to managing new cancer drugs.
"Cheshire and Merseyside PCTs have approved the funding of Sutent for the first line treatment of renal cell carcinoma, thereby reducing the number of cases which have to go before an individual patient panel. Lancashire and Cumbria PCTs have adopted the same clinical consensus approach for approval although collaborative budgetary arrangements are not yet in place. In Greater Manchester all requests are being considered on a case by case basis by PCT panels. It is hoped that by April this year, the North West as a whole will be using the same criteria, until NICE publishes its recommendations on Sutent in early 2009."
The Merseyside and Cheshire Cancer Network area :
Halton and St Helens PCT Knowlsey PCT
Liverpool PCT Sefton PCT
Warrington PCT Western Cheshire PCTWirral PCT.
The Lancashire and North Cumbria Network area :
Blackburn with Darwen Primary Care Trust Cumbria Primary Care Trust
East Lancashire Primary Care Trust North Lancashire Primary Care Trust
Blackpool Primary Care Trust Central Lancashire Primary Care Trust
Greater Manchester & Cheshire Cancer Network area :
Ashton, Wigan &Leigh PCT Bolton PCT
Salford PCT Bury PCT
North Manchester Oldham PCT
Rochdale Heywood & Middleton PCT Manchester PCT
South Manchester PCT Stockport PCT
Tameside PCT Trafford PCT
Central & Eastern Cheshire PCT
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The Pan Birmingham Cancer Network have agreed with Commissioners to fund Sutent as routine treatment for all patients with mRCC with effect from 1st April 2008.
Sandwell PCT South Birmingham PCT
Solihull PCT Birmingham East & North PCT
Heart of Birmingham PCT
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The North Trent Cancer Network have agreed to fund Sutent as routine treatment for all patients with mRCC with effect from 1st April 2008.
Barnsley PCT Bassetlaw PCT
Rotherham PCT Sheffield PCT
Derbyshire County PCT Doncaster PCT
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PCT’s currently fulfilling prescriptions for Sunitinib(Sutent) & Sorafenib (Nexavar) - please note this not an exhaustive list and relates only to those cases where we have patients from our support group who have won funding appeals via the Exceptional Circumstances Process and also where we been able to get replies via Freedom of Information requests.
1. Bassettlaw PCT
2. Barnsley PCT
3. Bedfordshire PCT
4. Berkshire (East) PCT
5. Belfast (S & E)
6. Birmingham (South) PCT
7. Bolton PCT
8. Bournemouth & Poole PCT
9. Bradford & Airedale PCT
10. Brighton & Hove
11. Bristol PCT
12. Bromley PCT
13. Cambridgeshire PCT
14. Cambridge ( South) PCT
15. Cardiff
16. Carmarthenshire Local Health Board
17. Conwy & Denbighshire Local Health Board
18. Cornwall PCT
19. County Durham PCT
20. Derby City PCT
21. Derbyshire PCT
22. Devon PCT
23. Dorset PCT
24. Essex (Mid) PCT
25. Essex (south West) PCT
26. Glasgow (North) PCT
27. Greater Glasgow and Clyde
28. Gloucestershire PCT
29. Hammersmith & Fulham
30. Haringey PCT ( London)
31. Hastings and Rottingdean
32. Hillingdon PCT
33. Kensington & Chelsea
34. Knowsley PCT
35. Lanarkshire ( Scotland) NHS Trust
36. Lancashire (Central) PCT
37. Lancashire (East) PCT
38. Leicester City PCT
39. Leicestershire County & Rutland PCT
40. Lincolnshire Teaching PCT
41. Lincolnshire ( North East) PCT
42. Milton Keynes PCT
43. Neath Port Talbot Local Health Board
44. Norfolk PCT
45. Nottinghamshire City Hosp.
46. Nottinghamshire County Teaching PCT
47. Northumberland PCT
48. Oxfordshire PCT
49. Peterborough PCT
50. Plymouth Teaching PCT
51. Powys Local Health Board
52. Reditch PCT
53. Salford PCT
54. Sandwell PCT
55. Sheffield PCT
56. Shropshire County PCT
57. Somerset PCT
58. Staffordshire ( North )
59. Staffordshire (South)
60. Stockport PCT
61. Southampton City
62. State of Jersey
63. Suffolk PCT
64. Sutton & Merton
65. Surrey ( East ) PCT
66. Swansea LBH
67. Sunderland PCT
68. Sydenham
69. Torbay PCT
70. Walsall PCT
71. Wandsworth PCT
72. Warrington PCT
73. Warwickshire PCT
74. Westminster.
75. Wolverhampton
76. Worcestershire PCT
77. Yorkshire (East Riding) PCT
ROSE WOODWARD & JULIA BLACK
"The Fight for Life Campaign"
KIDNEY CANCER SUPPORT GROUP
Last updated 29th February 2008.
rosewoodward@msn.com
Hi,
You may find www.KidneyCancerResource.com of help and for those wishing to join your campaign who may want more details of the various drugs and treatments for Kidney Cancer we hope the site will help to give an understanding.
Also to widen the appeal and the concept details of Rose Woodward's campaign are available on the Main Page.
Also to widen the campaign see http://www.kidneycancerresource.com/phpBB3/viewtopic.php?f=84&t=143
Also on the site is a mass of Press Articles to back up any claims or appeals, which can be quoted or downloaded for a bundle to prove the efficacy of the drugs and their availability to others, in other areas of 'The Post Code Lottery'.
Warm Hands from all those who are holding yours as you face the Challenges of Kidney Cancer (my symptoms first became visible in November 1998 - it is survivable if you have luck, strong support and a good medical team!)
Regards,
Greg L-W.
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