The Initial Application for Funding
 

A Step by Step Guide

1. Check with your Consultant that he has all the evidence he needs for the clinical justification about the drug that the PCT will want. Make sure your Consultant puts forward a very clear, strong and positive recommendation for the drug. Clinical trial information can be obtained from the pharmaceutical company manufacturing the drug and they may also have copies of expert opinion
2. Start to work on your personal statement and always include a photograph.
3. In your personal statement outline your situation, family commitments, medical history and any exceptional circumstances either clinical or social, that you want the PCT panel to take into consideration when they are reviewing your application
4. Find out the name, address and email contact details of your PCT (or LHB – Local Health Board – in Wales). Find out the name of the Patient Advisory Liaison Officer (PALS) at the PCT who may be able to help you with policies and procedures as well as email addresses of those involved in your application
5. Find out email addresses and names of the PCT Chief Executive and Chairman
6. Send out the enclosed Freedom of Information letter to the Chief Executive of the PCT; ask for this information as soon as possible
7. Read and familiarise yourself with the PCT policies to make sure they are being followed correctly; pay particular attention to time lines and the frequency and dates of meetings so you can have your documents ready
8. Finalise your personal statement and send it to your Consultant. Ask for it to be included in the application that is being submitted to the PCT. Make sure that you include everything that you want the panel to know about you. You are the best advocate for the treatment you need, no one else, absolutely no one else will have the same level of commitment to get the treatment you need. You can and should specifically request that the personal statement which has your personal details is not removed from the pack. The funding process can appear a little (or a lot) dehumanising and you can request your personal statement is not made anonymous. The funding panel is obliged to consider personal details in deciding policy for funding.
9. Ask your Consultant and the PCT in writing to copy you in on all correspondence
10. Specifically request in writing that you be informed of the decision of the panel without delay. Ask to be copied in on the decision making letter. See the Department of Health website: http://www.dh.gov.uk/en/Managingyourorganisation/PatientAndPublicinvolvement/Copyingletter
11. Keep a diary of phone calls and who said what. Make sure you date and time them along with copies of everything you send out. Ask for email acknowledgement that your information has been received by the correct department.
12. Hope for a good result but start preparing mentally for a long drawn out battle; start preparing for the appeal!