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DID YOU KNOW?

Narcolepsy UK are working on a range of leaflets, the first of which can be downloaded from here.

 



FORTHCOMING EVENTS

Catnap January Issue

The January 2012 issue of Catnap has arrived! Members can download the electronic version in PDF format here (requires Adobe reader or similar).

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Appealing a negative decision

There are a number of approaches that you may wish to discuss with your specialist.

Drafting a letter of appeal

You are fully entitled to be provided with the reasons for a negative funding decision. You also have the right to view a copy of your medical records. Ask your specialist for access to both.

Together this information can help you to draft a personal letter of appeal to your PCT. In this letter aim to counter each argument that has been put forward as a reason for declined funding.

Possible arguments that your PCT may use to support a negative decision and suggestions on how you may choose to counter these are listed here.

 

Specimen letter to the PCT to view your medical file

Specimen letter to the PCT to appeal a decision

How to appeal against a PCT Funding refusal


A step by step guide
  1. The most important thing is to get a copy of the funding refusal letter. Until you know the grounds for refusal, you will not know the grounds to appeal on.
  2. Write via e-mail to the person who wrote the letter of refusal and request full disclosure about the way your case has been handled so far, inform them that you will need the following information:
    • A complete copy of the minutes of the original application hearing (insert the dates if you know them)
    • A complete copy of the minutes of the appeal hearing, if it has happened (insert dates if you know them)
    • Complete set of all documents sent to the members of the appeal committee before the meeting
    • A confirmation of the job title, medical qualification, clinical qualification or other relevant qualification of panel members on the original panel and on the appeal panel
    • Confirmation of whether a sleep specialist was present on the original panel that refused funding
    • Request information on who will be giving an expert opinion to the appeal panel
    • Copies of the PCT policies governing the exceptional treatment process including any specific policies relating to the appeal process
    • Copies of any documents or statements about the drug that the PCT relied on in its original decision making process
    • Copies of the original application for funding letter that was sent to the PCT by your consultant, together with any evidence that was submitted
    • Terms of reference (TOR) for the appeal panel and the date these were ratified by the PCT board
    • Copies of refusal letters from the PCT for similar applications
  3. Request that all of these documents be sent to you via email and also hard copy to your home address. Stress that time is of the essence and until you receive this information you will not be able to prepare your appeal. It is your right to have this information.
  4. Ask for an acknowledgement that your request for information has been received
  5. IF all else fails ask for the PCT PALS (Patient Advisory and Liaison) officer to help by asking them to urgently take up your information request and to come back to you
  6. Again remember to ask for the name of the PAL you are dealing with; many PCTs employ several
  7. Your appeal will need to address the specific, individual points given by the PCT for refusal. If you just say “My Consultant thinks they will work” or “This is the drug I think I need” prepare to fail. If the PCT thought that you would have had the drug in the first place. You will need to argue your case on the specific grounds in your refusal letter
  8. Make sure you have the full support of your Consultant. Ask for copies of his support letters so you will know what has been said.
  9. Consider approaching your MP and GP for additional letters of support; it can’t do any harm and it could help
  10. Find out who is your local Councillor (parish is less important than County). Your local County Council will have an oversight committee that has a responsibility to ensure the PCT acts fairly. Write to your local County Councillor and ask for their support to get the treatment you need.
  11. Ask the PCT for confirmation in writing that you can present your case, in person, at the appeal hearing. State that you do not want such an important hearing to be a paper process
  12. If you are unable to present the appeal yourself ask for confirmation in writing that another individual can present your case for you
  13. Confirm with the PCT that you are able to bring along guests to the hearing
  14. At the hearing be prepared; make your case in a businesslike manner. Take notes and do not be afraid to ask for clarification on points if you don’t understand them. Try to remain calm and collected and do remember that these people work for you
  15. Make sure that your individual personal circumstances are considered. The PCT are obliged to do this as well as consider the professional opinion of your Consultant; this is the basis on which they should make their decision
  16. The PCT cannot rely on the fact that NICE have not approved a drug for regular usage. No matter how costly a drug might be they can’t operate a blanket ban. They have to consider all factors in the appeal process
  17. You have only one thing to do and that is to prove exceptionality. This is not the same as being unique
  18. The PCT cannot and should not ask you to prove something that is impossible to prove i.e. that you will respond to a drug better than someone else

These are the basic first steps. This is not a prescriptive process but a general idea on how to start the ball rolling. It can act as a template for those preparing an appeal or reviewing a funding application refusal.

Do remember that even if you lose your appeal that does not has to be the end of the matter. The problem is that PCTs all have different procedures but some PCTs do allow more than one appeal. In addition you can appeal your appeal if you have additional or new information that wasn’t considered at the time of the original appeal. This is usually time limited. Your GP or referring Clinician can write to the Chair of the Appeal Committee asking them to reconsider – again this is usually time limited. Finally and if all else has failed you can make a formal complaint about the appeal and the PCT would be obliged to carry out another review of the entire process. Hopefully if you follow the outline above, it won’t come to that.

 

 

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