Post by Deanne Jenkyns on Sept 3, 2007 12:19:46 GMT 1
Hi All,
Have Again written to our MP David Milliband in the hope that he will too bring this up the the European Commission. Will let you know what response I get as soon as I get one
Dear David,
I have contacted you on a number of occasions regarding my husband Jimmy and our fight to get the drug Tarceva on the NHS. The fight continues not just for us but many cancer patients are finding themselves part of a post code lottery because there PCT's will not fund the drug they need to keep them alive! Basically they are being sentenced to death because they live under a different PCT. Patients in Manchester and other parts of the county are been given the medication they need but people like us are finding themselves having to fight for approved drugs! This is very stressful not just for the patient but the entire family as I well know. I am contacted on a daily basis by desperate individuals in the same position as us and on many occasion the patient has died by the time they have raised the funds and never had the chance to try the drug. This will haunt them forever. I don't know if you are aware but the oncologist at STDH hospital refused to see Jimmy any more basically because I was making a noise and stamping my feet. He did not like it and we were told no more prescriptions for Tarceva. More distress, but possibly the best thing that could have happened for the oncologist he is now under in Newcastle is willing to fight in our corner. I am writing to you again not only for my husband but for the desperate patients and carers who contact me on a daily basis lots of the time in tears, which is very distressing for me. I really feel their pain anger and frustration and I genuinely want to help them which is also frustrating for me. I will continue to fight for Drugs like Tarceva and will continue to make a noise. This cancer drug Famine needs to be addressed more and more new drugs are becoming available but patients cannot have access to them. We are way behind everyone else in the UK more and more treatment are becoming available but we cannot access them. Less than 4% of funding goes to lung cancer and no government funding even though more people are diagnosed with LC than breast cancer. I am pleased to say that Jimmy continues to do well. It scares the hell out of me that had I not done my own research and challenged where would he be now? IT also scares me that other patients do not challenge and are often to afraid to ask questions, they put their trust in their DR and are basically dieing because of this. David, I have included a news clipping about a MP taking this to the European Commission in the hope that you will back this too!
The European Commission has been asked to investigate whether a local health authority can refuse to pay for drugs when funding is available elsewhere.
Tory MEP Chris Heaton-Harris claims the so-called NHS post-code lottery breaks European anti-discrimination laws.
He is representing a Rugby man who pays thousands for cancer drugs because his primary care trust has refused, saying their effectiveness is limited.
Warwickshire PCT said the decision was not made on the basis of cost.
The life-extending drugs are funded by PCTs elsewhere in the country.
Without it I will die sooner than I would
Russ Jones
Mr Heaton-Harris, who represents the East Midlands, has asked the European Commission to investigate the case of Russ Jones, a constituent who is dying from a rare form of abdominal cancer.
Mr Jones pays £3,500 a month for his daily tablets of Sutent, a drug he says will allow him to live longer. In other parts of the country the drug is available on the NHS.
Mr Jones told BBC News 24: "I know there's not much else for me, and this is the only chance that is available."
"Without it I will die sooner than I would."
Mr Heaton-Harris said: "If you're being withheld treatment because of where you live, it could be similar as being denied treatment because of your religion or colour."
'Individual basis'
In a statement, a spokesman for Warwickshire PCT said: "Warwickshire Primary Care Trust have a duty for ensuring all its resident population are in receipt of health care services.
These decisions are never made without a lot of thought and consideration
Warwickshire PCT
"The main focus for the Individual Cases Panel was to consider the outcome for Mr Jones, and was not concerned with creating a precedent for the PCT that would be unaffordable.
"These decisions are never made without a lot of thought and consideration, and each case is considered on an individual basis."
The Department of Health said that not only was it unacceptable for trusts to refuse treatment that has already been licensed elsewhere, but they should not refuse to pay because a drug is too expensive.
The post-code lottery in drug funding has seen patients being treated alongside each other in the same hospital, but with different levels of NHS funding.
Kind Regards
Deanne Jenkyns
Have Again written to our MP David Milliband in the hope that he will too bring this up the the European Commission. Will let you know what response I get as soon as I get one
Dear David,
I have contacted you on a number of occasions regarding my husband Jimmy and our fight to get the drug Tarceva on the NHS. The fight continues not just for us but many cancer patients are finding themselves part of a post code lottery because there PCT's will not fund the drug they need to keep them alive! Basically they are being sentenced to death because they live under a different PCT. Patients in Manchester and other parts of the county are been given the medication they need but people like us are finding themselves having to fight for approved drugs! This is very stressful not just for the patient but the entire family as I well know. I am contacted on a daily basis by desperate individuals in the same position as us and on many occasion the patient has died by the time they have raised the funds and never had the chance to try the drug. This will haunt them forever. I don't know if you are aware but the oncologist at STDH hospital refused to see Jimmy any more basically because I was making a noise and stamping my feet. He did not like it and we were told no more prescriptions for Tarceva. More distress, but possibly the best thing that could have happened for the oncologist he is now under in Newcastle is willing to fight in our corner. I am writing to you again not only for my husband but for the desperate patients and carers who contact me on a daily basis lots of the time in tears, which is very distressing for me. I really feel their pain anger and frustration and I genuinely want to help them which is also frustrating for me. I will continue to fight for Drugs like Tarceva and will continue to make a noise. This cancer drug Famine needs to be addressed more and more new drugs are becoming available but patients cannot have access to them. We are way behind everyone else in the UK more and more treatment are becoming available but we cannot access them. Less than 4% of funding goes to lung cancer and no government funding even though more people are diagnosed with LC than breast cancer. I am pleased to say that Jimmy continues to do well. It scares the hell out of me that had I not done my own research and challenged where would he be now? IT also scares me that other patients do not challenge and are often to afraid to ask questions, they put their trust in their DR and are basically dieing because of this. David, I have included a news clipping about a MP taking this to the European Commission in the hope that you will back this too!
The European Commission has been asked to investigate whether a local health authority can refuse to pay for drugs when funding is available elsewhere.
Tory MEP Chris Heaton-Harris claims the so-called NHS post-code lottery breaks European anti-discrimination laws.
He is representing a Rugby man who pays thousands for cancer drugs because his primary care trust has refused, saying their effectiveness is limited.
Warwickshire PCT said the decision was not made on the basis of cost.
The life-extending drugs are funded by PCTs elsewhere in the country.
Without it I will die sooner than I would
Russ Jones
Mr Heaton-Harris, who represents the East Midlands, has asked the European Commission to investigate the case of Russ Jones, a constituent who is dying from a rare form of abdominal cancer.
Mr Jones pays £3,500 a month for his daily tablets of Sutent, a drug he says will allow him to live longer. In other parts of the country the drug is available on the NHS.
Mr Jones told BBC News 24: "I know there's not much else for me, and this is the only chance that is available."
"Without it I will die sooner than I would."
Mr Heaton-Harris said: "If you're being withheld treatment because of where you live, it could be similar as being denied treatment because of your religion or colour."
'Individual basis'
In a statement, a spokesman for Warwickshire PCT said: "Warwickshire Primary Care Trust have a duty for ensuring all its resident population are in receipt of health care services.
These decisions are never made without a lot of thought and consideration
Warwickshire PCT
"The main focus for the Individual Cases Panel was to consider the outcome for Mr Jones, and was not concerned with creating a precedent for the PCT that would be unaffordable.
"These decisions are never made without a lot of thought and consideration, and each case is considered on an individual basis."
The Department of Health said that not only was it unacceptable for trusts to refuse treatment that has already been licensed elsewhere, but they should not refuse to pay because a drug is too expensive.
The post-code lottery in drug funding has seen patients being treated alongside each other in the same hospital, but with different levels of NHS funding.
Kind Regards
Deanne Jenkyns