As you will have seen from the ‘My story so far…’ page, raising the funding for this operation on the NHS was quite a long winded affair!Do not give up the fight! There are now 3 of us in England who have won; two of them were awarded funding immediately.
There are several people in Scotland still awaiting funding decisions, this is because the procedure/operation has been suspended there pending the hearing of a business case put before the Central NHS committee – this may take up to a year to reach a decision!
You will need to provide your Patient Care Trust (PCT) with as much information as possible (see Contacts & Information page) as well as referral letters from your Surgeon and Consultant – they will also be able to supply statistical information to the PCT. Medtronic (the manufacturers) have access to the USA statistics as well.
If your application is turned down, appeal and appeal again – have your case referred to the convenor (your PCT can provide their address) if you feel the PCT failed to carry out procedures in making their decision correctly.
Just bear in mind the cost of this procedure is far less than the costs involved long term with the other available treatments – ultimately it will save the NHS money!
My main advice is, do not wait until you are seriously ill to apply for funding and/or have the operation done. If you are able to raise the funding yourself the costs of having the procedure done privately is approximately £19,000 (dependant on length of stay, recovery etc)- the implant device alone is over £9000 of this cost.
Having the procedure carried out privately is in no way detrimental to your application for NHS funding – this can still be awarded post op!
If you would like to discuss my financing experiences in more detail just send an email to CLEAL@fsmail.net
Check the ‘contacts & information’ page for sources that may be of use to you when making your application.
