Tweet
My younger sister currently has Hodgkins Lymphoma (for the 2nd time) and was put forward for a new treatment at the Royal Free in London. The treatment is currently on trial, but between stages, however the hospital are willing to treat people in the meantime as ‘compassionate’ treatment. However, they require some funding from the PCT for this. The charge to the PCT is around £3k (personal funding would be around £18k, as it would include the specialist staff and room necessary for the treatment).
My sister has waited over 13 weeks for a decision from the PCT and today has been refused funding for the treatment because the drug is unlicensed. The drug itself is licensed for use as an anti-rejection drug for transplants, however research has proven it has another use, hence the trial.
The consultant at the Royal Free is looking into the appeals process, but has warned us that it could take just as long again.
My sister is currently back on chemotherapy every two weeks, which technically isn’t working as she is still cancer-positive, in the hopes that it might keep the tumours from growing (they are getting visibly larger every day).
She is lined up for a stem cell transplant, using my cells, once she is in remission, however Christies have warned that they have pretty much run out of options to get her into remission.
We are really unsure what to do. Of course, people have said we should contact our MP (who apparently doesn’t have the time, with the forthcoming elections etc) or go to the local paper; however, I’m worried that this might prejudice our chances with the PCT if we get a chance to appeal.
Should we let the process run its course (another 13 weeks or more!?) or should go down the whole publicity route and hope that we get the desired outcome??
My sister has waited over 13 weeks for a decision from the PCT and today has been refused funding for the treatment because the drug is unlicensed. The drug itself is licensed for use as an anti-rejection drug for transplants, however research has proven it has another use, hence the trial.
The consultant at the Royal Free is looking into the appeals process, but has warned us that it could take just as long again.
My sister is currently back on chemotherapy every two weeks, which technically isn’t working as she is still cancer-positive, in the hopes that it might keep the tumours from growing (they are getting visibly larger every day).
She is lined up for a stem cell transplant, using my cells, once she is in remission, however Christies have warned that they have pretty much run out of options to get her into remission.
We are really unsure what to do. Of course, people have said we should contact our MP (who apparently doesn’t have the time, with the forthcoming elections etc) or go to the local paper; however, I’m worried that this might prejudice our chances with the PCT if we get a chance to appeal.
Should we let the process run its course (another 13 weeks or more!?) or should go down the whole publicity route and hope that we get the desired outcome??
Talk about a rock and a hard place?!! Do you know anybody who can get you 'insider' type info on the PCT? Find out how they are likely to react to adverse publicity? Even your sister's GP might be helpful in that department. 
Comment