Hi
My teenage son has recently had a request for Cabozantinib denied by the Cardiff and Vale health board. He has a terminal diagnosis and this treatment is his last hope for extending his life.
We will, of course, be appealing the decision, but this takes time......and time is what we do not have.
We are sadly not in a position to fund the treatment ourselves so we are desperate.
Does anyone have any experience or advice in this situation?
Thank you
Hello
I am sorry to hear that your son has had a diagnosis of cancer and has had a request for Cabozantinib turned down. I can understand that this is worrying for you. Why not give the Support Line a call and talk to one of the advisors on there who may be able to make some suggestions. There is someone there from 8am-8pm daily.
I do not have personal experience of funding requests but have had a look for you on the NHS Wales website and will pop some links here that may be of help.
NHS Wales has an Individual Patient Funding Request (IPFR) process. Its says that it can consider cases within 24-48 hours when they are urgent rather than wait for the next review of funding cycle.
You could perhaps talk to your son's consultant and see whether they are able to request an urgent reconsideration in view of your son's prognosis. They could also maybe show the clinical reasons for the potential treatment, what delaying it could mean and why other treatment would not be suitable. They could ask whether due to the need for an urgent decision whether an exceptional panel could be considered.
The advisors on the support line would be able to talk through this process and give more information.
Individual Patient Funding Requests (IPFR) - NHS Wales Joint Commissioning Committee
Submit an IPFR application - All Wales Therapeutics and Toxicology Centre
You could also contact Llais which provides free, independent NHS advocacy in Wales. You could perhaps explain the need for urgency in view of your son's condition.
I hope this helps a bit. This is only information that I found on the NHS website so I would advise giving the Macmillan Support Line a call and getting some support from the trained advisors.
Jane
