Saturday 15 March 2008

Generic Fund Raising Letter

Your Address Here

Tel or Email here

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

2 comments:

Rose W said...

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

Greg_L-W. said...

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.